Post Viral Syndrome

I was diagnosed with post viral syndrome this February 2009.  I had pneumonia in November which turned into asthmatic bronchitis.  While I was on all the medications, I developed very odd symptoms:
tingling/numbess in hands and feet (sometimes lips and face)
burning and cold sensations throughout my muscles
my body shakes/tremors
weakness and some pain, more weakness in arms and legs - the weakness is better but in the arm that I use (my right arm it is more persistent and intense)
upset stomach
stiff fingers that don't seem to work like they used to
sleeplessness
muscle twitches
muscle soreness
I have been to my doctor so many times and she kept telling me that I was just recovering from the pnuemonia (pneumonia) and that I was anxious and the put me on ativan.  I am anxious but it's because of all these unexplained symptoms.  I saw a rheumatologist that said I have fibromyalgia and I'm going for aquatic physical therapy for that.  I saw a neurologist who found nothing neurologically wrong with me and said it's post viral.  All my bloodwork has been normal and every doctor does not think it's anything pathological.  The weakness in my right arm and the shaking/tremors are very unsettling to me as are the stiff fingers that don't work like they used to.  The symptoms do vary from day to day and I have good days and bad days.  When will this all go away?  Are there any treatments for post viral syndrome?
Stefanie


This discussion is related to post viral neuro syndrome.

[abhijeet v ghosh]

Hello Stef1971,
It's really sad to read about all the stress and agony you have gone through. But cheer up. All your reports,investigations are normal. You need a good counseling, good rehabilitation expert / physiotherapist. You really need to cut down on the number of doctors you have been seeing and trust them as well as their words towards your condition. They all have done a fine job.

Some patients have got a prolonged post viral syndrome. But anxiety, lack of confidence make it worse as it releases different types of chemicals from your body to the receptors which results is abnormal response.
So take a break, and you will be perfect.

Do keep you informed,
regards
abhijeet

[Stef1971]

Thanks for responding to my concerns.  It's scary to feel symptoms that you have never felt before.  I was a completely healthy 37 year old before I got the pneumonia.  I used to walk a couple of miles a few times a week and didn't see the doctor very often at all.  I guess I just need to trust what the doctors are telling me, I just want these symptoms to go away.  Should I have insisted for an MRI or some other kind of test to rule out other diseases.  The neuro said I didn't need furthur testing, but that if I felt I needed to see her in the future I could.  Should I be satisfied with this?  None of the doctors think it's anything bad, but I am still worried at times.
Stefanie

[ginak]

Stef,

I certainly think you should insist on an mri of the brain, spine, and thoracic area. This will at least put your mind at ease and at least you would have had a complete work up. I have had the EVP and spinal tap to rule out MS. Sometimes early in diseases like MS, tests can be quite normal.

[jellylegs]

hi stef, i'm in the same as you, only  i had pneumonia 18mths ago and never recovered since.  i had very bad leg weakness and leg pain at night and now have a weak leg wears out when i walk on it but it looks fine so docs say there's nothing wrong with it. after a lot of tests which i had to get done private they say chronic fatigue/post viral. My job is gone (which i loved and lived for) because of it being physically demanding,my home is next cos i'm not able to keep up with repayments and docs just say they'r happy to tell me its nothing serious, probably improve after 2 yrs! I dont even have the main symtoms (symptoms) of tiredness' brain fog' chronic sore throat that signals chronic fatigue and still thats what call anything that doesnt fit in the box. Sorry for the rant but i'm completly stiff tonight and not able to keep up with everybody else so the internet becomes a friend. Hope you fare out better than i have or at least get some help from the medical profession.

[Padro46]

Have had alot and more of the same as you--Have also not been able to get a Dx other than probable Post Viral--But mine has not been Identified--EBV, Parco-CMV--Have you had any Brain Freeze like symptoms and what kind of meds are you on--My Nuero has had me on Topamax and now Lyrica-been going on for 14 months with me.

[Stef1971]

it sounds like I have the same kind of weakness like you.  I feel weak, but I don't think that I really am.  I keep feeling it in my lower left leg and foot, it tingles and feels stiff.  I also feel the weakness/stiffness in my fingers and sometimes they are hard to use - I think it's because they are so still and sore.  It is so frustrating and I feel like people think that we are making all this up.  I have so many symptoms that vary day to day, hour by hour.  I hate even telling people about them sometimes because they will think I'm nuts.  I never had health problems before and sure don't want them now.  When will this go away?

[Stef1971]

My rheumatologist put me on a muscle relaxer because my muscles are so tight, but it doesn't seem to help.  They said it should help me sleep at night, but it doesn't.  The rheumatologist says I have fibromyalgia.  The neurologist (and also my eye doctor) say that it is post viral.  My primary care doctor hadn't even heard of post viral and I think she thinks I'm nuts and just anxious because I got so sick after the pneumonia.  She put me on Ativan and thinks I need to look into a long term med for anxiety.  I wish she could understand that the whole reason why I have anxiety is because I have a whole bunch of odd symptoms that come and go from day to day, hour to hour.  I'm not making up the symptoms and I would be ever so happy if they would just go away.  My neuro said that there is no time frame on when the post viral will be gone and that I need to try to get rid of as much stress in my life as I can.  The rheumatologist has me going to aquatic physical therapy twice a week.  I guess it helps.  I also have alot of tremors with this, my hands, arms and legs shake alot when I do any kind of controlled motions or even with just a little exertion.  If I am at all nervous or excited about anything, the shaking it intensified.  I just watched my son's basketball game and it was so exciting and I ended up shaking so much that I had to take an ativan just to calm down, it's like my nervous system is in overdrive and I have no control.

[kl42]

i had something very similar. it will go away it takes a lot of time. only thing i would suggest. get adjusted by a chiroprator. on a regular basis it frees up your nervous system helps it to heal. alot of the weird symtoms (symptoms) numbness, tinglinmg. ect. will go away quicker. good luck. Kevin

[Stef1971]

Thanks so much.  It's so reassuring to know that there are other people out there that understand what you are going through.  How long did it take for you to feel better?  Stefanie

[Hope75]

Yes, I've been where you are.  I have improved to a point where I can go a couple of months and feel pretty normal, then it comes back.  2.5 yrs of this.  It is bearable and yes, you will get anxiety when your body doesn't work correctly and I don't think any of the docs have any answers about post-viral syndrome, so they are projecting their anxiety onto you (b/c they don't know either).  Sorry docs, but it happens more often than not in these "no abnormal test results" situations.  So, keep your chin up and just know you are not alone.  There are other weak legged, twitchy, tingly, burny people out here with no answers.  Johns Hopkins gave me the "post-viral" syndrome diagnosis and I don't even recall being ill.  I did get several MRIs though to help rule out MS, etc.  I have been pretty lucky with the docs I've had and still don't have definitive answers or diagnosis.  Right now, I am following up on a positive screen for the Lyme Disease bacteria.  Cover all your bases and the comment about a good physiotherapist is a good idea.  

[Stef1971]

Thanks for the encouragement and support.  When I start to panic over my "odd" symptoms that my primary care doctor says don't add up to anything, this website and everybody's comments make me feel so much better.  I hope that you continue to feel better and have more times when you feel better than not.

[Nancy91]

This may or not be sound the same but has me thinking. Six month ago I had a Flu Shot and a cold.  Then extreem hip muscle burnning. Then muscles in back were stiff and then I pulled my back out. The skin around my right hip was electrical and stinging.
I was in bed for 2 weeks with muscle relaxers for pain.  My top right thigh felt like it had
stiches and stinging. I have cramps in my piriformis muscle.  I seem to be getting better but still have some cramping and stinging.  One moment fine the next in pain.  I am over wait but I felt totaly fine before the Flue Shot.

[Stef1971]

That's funny you mention the flu shot.  I had the flu shot when I was feeling like I might be getting a cold.  I had a healthy physical a couple of days after the flu shot and then one week later I had pnuemonia (pneumonia), which I have never had in my life.  After the pnuemonia (pneumonia) came the asthmatic bronchitis and while I was on the steroids and meds for that, I started with all of the neurological symptoms.

[ciara2]

Wow after ready your post i could have sworn you were talking about me.  I am also 37 and after having the flu in August 08 i developed all the symptoms you did plus tinnitus and ear pain.  I was diagnosed with pvs by my doctor who i have seen so many times over this and also wanted to put me on meds for my anxiety.  The ent specialist found nothing wrong apart from some tmj dysfunction.  My neurologist also concluded that i had pvs and that due to my anxiety my breathing was incorrect which wouldnt be helping.  Even with these results i still cant help but worry about things as i have not had a mri either as no one thinks it is needed but for peace of mind i would have liked one.  I am on amitriptyline to help with the nerve pain as they think my nervous system has been over stimulated and will take time to calm down.  Some things have improved but not alot and more things have added to my list of complaints.  Its so difficult as i feel like when things change my doc will always associate it with the pvs even if its unrelated.  I am so tired of it all and have had my follow up consult with the neurologist and she was adament it is nothing serious.  My white blood count has only just returned to normal which shows that the virus has finally left my system.  I do think we have to have faith in our medical providers and hopefully things will settle down as i have been told it can take up to two years also.  I know how you feel and it is very frightening as you just want answers and there is not alot of info out there about pvs.

[Stef1971]

Do you think that the medication is working to calm your nervous system down?  I am not taking anything on a regular basis for this and I wonder if anything would help.  I have the prescription for Ativan for anxiety but it's not something that I want to take all the time and the doctor said it can be addicting and I would have to switch to something else if I was to continue to need it.  Therefore, I am not taking anything right now.  My rheumatologist gave me a prescription for a muscle relaxer, but that didn't do a thing for me so I am not taking it.
I know what you mean about the pvs and your primary care doc.  I am almost afraid to call my doc or see her anymore because I think she thinks I am crazy.  I have been having some other symptoms that I need to talk to her about that I think don't relate to the pvs.  It's awful, because once you have the pvs diagnosis, you don't know what is pvs and what you should be concerned about.  
I also have a follow up with my neuro and I hope that she will order an MRI just to give me a better sense of peace of mind.  It's so scary when your body is not what it was and it's so hard to explain to people.  They can't see all of the symptoms and sensations that your body is experiencing and you have to wonder if they really understand or believe you when you talk about it.  I am tired of talking about it sometimes, but my body constantly and in strange ways, reminds me that I am not 100%.  Do you ever have days now when you feel completely normal?  Do you have more good days than bad?  I wish there was more info on this.  Please keep in touch.

[Hope75]

I don't know about anyone else, but I do feel normal some days and others I feel like I am ready to break out the wheelchair.  I get tired of talking about it too sometimes and I'll try to ignore my symptoms and just act normal.  I don't know if this is a good thing or not, but its what I do.  I just dont think anything good can come from talking about my symptoms all the time.  For what its worth, I had to take Ativan to sleep for about 1.5 yrs and I just tapered off slowly and did fine.  I didn't have any addictive symptoms or anything.  I think us people that worry about being addicted, probably aren't of the addictive personality type and we are vigilant about what we take.  Don't stress yourself too much over that, but its good to have a healthy amt. of concern about addictive properties of meds.

[Stef1971]

Thanks for the input.  I have to ask, did anyone have muscles that twitched with the pvs? For the last couple of days, I have alot of muscle twitching.  Especially in my legs, I can actually see the muscles moving when they twitch.

[ciara2]

I really sympathise with you as I know exactly how you feel.  I too get sick of feeling it, thinking about it and talking about but like you its hard to put it out of your mind when your body is constantly sending out weird symptoms.  The amitriptyline im on has helped with the nerve pain and it is a mild antidepressant so it also helps with the anxiety and as i take it at night it really helps me sleep.  Do try taking something as they can help and I know it makes me feel like at least i am doing something to help with all of this mess.  I have learnt to LIVE with it more now and have tried not to focus to much on the strange things my body is doing as I spent months fighting it and searching for new help and more answers.  I felt like as if had to keep pushing for answers to keep my sanity. I did learn slighty more but it cost a fortune and put a strain on me which had my family more worried about my state of mind than my health sometimes.  It can be very scary and i know i felt very alone even though my family and friends have been fantastic but you are the one going through it at the end of the day.  I feel quite confident that things will return to normal as I do have days where I feel great, a part of this could be due to the meds but at least it allows me to stay calm and feel more like the old me. I hope this helps!

[Stef1971]

Thanks so much.  It's so encouraging to talk to people who understand what you are going through.  I am so glad that you have some really good days - I hope that I get there too.  In some ways, I feel that I am improving, it's such a slow process and who would think that you could be sick with something like this for so long?  I will ask my doctor about some possible meds because sleep is so important with pvs.  I find that if I don't get enough sleep, I feel much worse and more symptoms the next day.  I hope that you keep continuing to improve and one day will be all good days for you.  Let's get our old selves back!!!!!!!!!!!

[Hope75]

I take Pamelor and it is very very similar to amytriptiline.  I tried amytriptiline and it REALLY worked well, but the problem was that I slept 16hrs the first time and almost couldn't make it to work during the week.  I know I would have developed a tolerance if I had kept on it, but I didn't have the time to actually develop that tolerance!  Anyway, Pamlor and amytriptiline are tricyclic antidepressants, but they work or neuropathic pain as ciara said.  They really do help, because if you lose sleep, your immune system suffers.  You are definitely not alone and I feel for you.  My symptoms are at a high right now, but sometimes I can go 4-6 weeks with minimal symtpoms and feel great.  We just have to keep in mind there is light at the end of the tunnel.  I am going to my neuro tomorrow to discuss the possiblity of Lymes Disease, but as it stands, I am diagnosed with post-viral syndrome and small fiber neuropathy through Johns Hopkins.  Take care and get some sleep!

[jellylegs]

Hi Stef, Jellylegs back again, i also have the crazy twitching in my legs and night time jerking that has kept me up for 4 and 5 nights in a row. During one episode i took a train ride because of being too tired to drive and guess what,as i dozed off i had a massive arm jerk and the guy next to me got up and left hugging his coffee cup close to his body. He was lucky it didnt get dumped on his lap! my neuro just said the jerking was common to all the fatiguing illnesses and not to worry about it, but then he's not the one falling asleep at the wheel due to getting no sleep. Would'nt give me any meds either and i got so desperate once after 3 endless nights i took my mothers sleeping pills and got 4 hrs sanity saving sleep. have'nt had an episode for a while so mabey thats that over for now. By the way i didnt even read the label or dosage which is stupid i know but what are we to do when a doc just tells you there's no treatment for post viral syndrome.

[PlateletGal]

For all of you who have "post viral syndrome" --- I hope you will consider joining MedHelp's Epstein Barr Virus or fibro/Chronic Fatigue Syndrome forums. We understand and we have the latest research and treatments posted in our health pages.

[PlateletGal]

Also get tested for LYME disease. Remember that testing is often inaccurate. The preferred test for lyme disease is:

Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).

http://www.immed.org/illness/clinical_testing.html

[Hope75]

OMG you have to find a doc who will help you sleep!  I called my doc one time in the middle of the night b/c I couldn't sleep and he said to take 3 Benadryl.  I did and I slept about 4/5hrs.  I'm not a doc and I don't know what you can take, but that was a lifesaver for me one night.  Really, you need a consistent med to help you sleep, though.  I've been on Ambien (kinda freaky, had memory loss, didn't like but slept), Trazodone (slept but had heart palpitations), Lunesta (did nothing for me), Remeron (loved the sleep, hated the weight gain), Ativan (loved the sleep, didn't like idea of dependency) and now I'm doing the whole Pamelor thing and it is working so far.  As you can see, I have been thru a great deal with the insomnia issue!

[Padro46]

Anyone have the Ice Brain Freeze and Lack of appetite with PVS Dx??  Also have heard up to two years, I am going on 15 Months and still trying to find out what is wrong??

[Stef1971]

I never had the brain freeze but went through a period where a had no appetite and forced myself to eat crackers and drink fluids.  I lost 6 lbs in a week and was very scared as to what was going on.  I now have my appetite back, but find that if I don't get enough sleep, my appetite is off.

[Stef1971]

I appreciated your story about the jerking and twitching!!!  It put a smile on my face thinking about the guy with his coffee cup:) It reassures me to know that there are other people out there with the same symptoms since it seems many don't understand this pvs thing.  I was at my primary care doctor yesterday, and all she kept saying was that she wished she could just reassure me that I am ok.  She also decided to put me on Zoloft as an anti-anxiety to try to help my nervous system.  I tell her my symptoms and I think she really can't believe that I have all the symptoms that I say I do.  The most concerning symptoms to me that I have right now (aside from constant twitching) is that I have this sensation of weakness that seems to be mostly in my right arm and left leg.  Sometimes I fee it in my other arm, but not often.  I always pass all the little strength tests that they give you in the office so I don't know if I am actually weak or just have that sensation.  The other thing is my fingers.  They don't work like they used to - I can't really explain it.  It's almost like they are rigid and stiff, I don't drop things and they are not really weak they are just so rigid, stiff and shaky when I do controlled movements.  It's hard for me to grasp things sometimes.  Anyone else experiencing anything like this with pvs?

[jellylegs]

I'll be honest with you and say i dont believe i'v got "post viral syndrome" or whatever they call it. Any description of it i'v read of it does not include the main symptoms i have and i dont have any of the tiredness, brain fog or throat problems that are listed as a sign of chronic fatigue. as a matter of interest do you know what type of pneumonia you had. Mine was said to be atypical and they said i'd be fine in a week or two, needless to say it was all downhill from there. The stiffness you mention in fingers,i'v had that in my bad leg especially after a round of iv steroids. Would be a good idea to get a rheumatoid panel done, i did and it showed nothing only lightened my pocket again.

[Padro46]

Did you get any comments from a Nuero other than Post Viral??  I cannot other than it takes TIME (16Months Now) and there is nothing when can do--I have never even known anyone with this Dx and dont know where else to go--any suggestions would be greatful

[Stef1971]

They never said what kind of pneumonia it was.  It came on fast though.  I had just been for a physical on a Monday (clean bill of health), was coughing like crazy on a Thursday (Thanksgiving) with a low grade fever.  Went to the doc on Friday and the chest x-ray confirmed what he thought, pneumonia.  I had had a flu shot a few days before, don't know if that had anything to do with anything.  I then got asthmatic bronchitis and couldn't breathe and ended up on all kinds of steroids and that is when all my odd symptoms started.  It initially started with me feeling like something was crawling in my back and the sensation would travel throughout my body.  I thought it was a reaction to all the meds and steroids and the doc said to stop taking everything, but I ended up with more symptoms.  I did see a rheumatologist and they said I have fibromyalgia.  This is something that I had thought I had before I even got sick because I have had years of intense achiness that comes and goes.  Funny thing with this pvs, is that I have hardly been achey (achy) at all with it.  Something that I did find interesting though, was that I had been for an eye doctor appt just because I'm 37 and thought it was about time I go.  My exam was perfectly fine and she doesn't need to see me for 2 years.  When I was telling her all of my symptoms she was the first one to mention post viral syndrome.  I had never even heard of it.  She told me to eat lots and lots of vegetables and drink lots of liquid.  When I went to the neuro a month later, I never mentioned what the eye doctor said about pvs, and the neuro diagnosed me with pvs on her own.  I then told her what the eye doctor had said.

[Padro46]

I have been told anything with a syndrome attached to it is the Doctors saying they dont know, dont know if that is true or not--has your nuero Rx you anything or just told you time as well.  I hope you feel better soon

[Stef1971]

The neuro told me it takes time, she said that she couldn't give me a time as to when it will be gone.  Just that it takes time. I am going back to her on 4/13 for a follow-up and am going to try to get her to order an MRI just for my own peace of mind.  I know I should believe the diagnosis they are giving me, but sometimes it's hard to when it is such a vague diagnosis and there is so little that we can read or   find out about when it comes to pvs.  I'm glad that all my tests have been normal, but it's frustrating to not feel right.  I hope that you feel better too.  Hang in there.  At least we all have each other in this forum for support - thank goodness for that.

[Padro46]

Thanks, I sure hope you are right, agian I have been on this ride for since Dec 07--and have seen many docs and spent $$$$$ and they are tired of me--and I was a person that had been to the doc maybe 10 times my whole life (47) hopefully this time thing will come to a end soon.. Thanks again

[Stef1971]

I understand how you feel.  I haven't had this thing as long as you have but I so understand.  My primary care doc is already sick of me.  She says that she doesn't think I'm making things up but that she wishes she could just say something that would reassure me.  That makes me think that she really does think it's in my head. I was like you, I never went to the doc unless I was really sick and needed antibiotics which was not often at all.  It's not like I was there all the time with one sickness or another.  I was totally healthy.  The one reassuring thing about seeing many docs, I think, is that if it really was something life threatening or some aweful disease, they would have found it be now.  My friend who is a nurse keeps telling me to remember that I have been to my primary doc, eye doc, rheumatologist and neurologist and that it would be a shame if all these specialists had missed something.  She is trying her best to reassure me that I am ok and I think she really believes that I will be ok.

[Padro46]

I agree with your friend on they shpuld find something if it was a Biggie--However I wish they could at least tell you something other than Post Viral

[ciara2]

I think that one of the hardest things to get through in all of this is to believe that nothing more serious is going on.  My sister also said the same thing, that with all the doctors and specialists I have seen there is no way that all of them would have missed something serious if it was there.  She was not making light of anything I was experiencing but more trying to put my mind at rest.  I do feel better mentally but even in the past few days I am once again having more new problems which may have nothing to do with pvs but I hav'nt even gone to my doctor yet as I feel like "here we go again". Im hoping things will just settle on there own but unfortunately it is making me so anxious which I think is going to be apart of life for me until I am are better, every ache and pain, etc will have me in a panic.  

[ciara2]

By the way I also had the stiff and sticking fingers.  They were hard to explain as they worked ok but didnt feel right kinda slow.  They are much better since ive been on amitrip.

[Stef1971]

Thanks so much for writing.  I feel much relieved knowing that somebody else out there had the same problems with their fingers.  You described what I am feeling exactly right when you said stiff and sticking fingers.  It is so strange!!!  I am so sorry that you are going through this misery too and that you are having new symptoms.  Every symtom is scary because you don't know what is pvs or what you should be concerned about.  Even if a new symptom is pvs, it is still scary.  And yes, sometimes it is so hard to not think that it is something more serious because there is so little known about pvs.  Not one person that I have come in face to face contact with has ever heard of this.  Thank goodness for this website!!!  At least we can support each other.  I hope you feel better and your new symptoms go away.

[Padro46]

Has anyone been given a Rx for Oxcarbazepine for the above problems--Its another Anticonvulsant That I really dont want to take--But is the only thing I get from My Nuero.

[Padro46]

Anyone had Jaw issues Numbness and such with Post Viral??

[ginak]

Hello Padro,

I experience TMJ like jaw pain and I have random numbness everywhere as you know. I have not had numbness in my face, but I have felt like a brain freeze/numbness in the back of my head. It only occurred one time. Let's hope that it is all apart of the post viral process. Don't give up hope, but I know that it is hard.

[Padro46]

Thanks for the response, just having trouble with the Dx of Post Viral and ride it out (15 Months) worried I am missing something??

[Padro46]

Anything new--Are you better?

[ChrisD07]

I have been reading these forums for the past month and it is good to know others are experiencing similar things.  I woke up about a month ago with my right arm and leg tingling, this subsided after an hour.  The next day I had tightness and burning in my shoulders and forearms, which turned into a constant internal tremor in my shoulders.  I've had constant muscle twitches throughout my body, lasting about 30 sec to 5 minutes.  I don't seem to have any weakness, but I have a constant shaky feeling whenever I lift, push or exert my muscles.  I will sleep for 8-9 hours but still feeling tired throughout the day and have to take a nap.  I feel stiff at night and havent experienced any pain.

I am a very physically fit 23 year-old male.  This past month I have had a cervical and brain MRI, arm leg EMG, 2 blood and urine tests (testing for STD's, lupus, diabetes, testosterone, thyroid), esphogram and a chest x-ray.  All of which turned up normal.  My GP thinks its anxiety and my neuro thinks it is anxiety.  I disagree, I think they and just trying to write me off as a young hypochondriac.  I am not feeling any sort of anxiety and I am very in tune with my body.  I had a bad cough that lasted for  about a month and a half (did not see anyone for this), once it subsided I started experiencing this symptoms.  I was wondering if all of this could be PVS? my neuro said I didn't have ALS, MS , or Parkinson's and looked at me like a nutcase when I suggested Post Viral Syndrome.

I wish I could have an answer because all this trembling and shakiness is tearing me apart, I am not the man I use to be and I know something is wrong and its not just in my head.  I've been like this for a month now and want to know if there is hope for things to get better.

Thank you
-Chris

[Stef1971]

Haven't had a great week.  The doctor started me on Zoloft and it makes me feel sick.  I had to stop taking it for a few days and then we will see what happens.  My stomach feels upset and I feel really tired this week.  Hopefully this too shall pass.  How are you doing?

[Stef1971]

Chris,
I know how you feel and it is very frustrating because you know that this is not in your head.  Your doctors should at least acknowlege that you are feeling symptoms.  It's wonderful that all your tests are normal but that doesn't mean that you feel normal.  I too shake and have tremors.  When I told my neuro this she said she didn't really think I was shaking too bad.  Well, I feel it and it makes me feel really frail and fragile and that is not who I am.  I used to walk a couple of miles a few days a week and I was always outside in the yard doing all kinds of work.  I was not a weak, lazy person.  When I reach for things with my arm it shakes, my fingers shake when I move them up and down, my wrists shake when I move them side to side.  It's like a stiff shakiness.  Is that what you experience?  My muscles also twitch.  My neuro recommended getting a massage and I just went for one this week.  It seemed to help a little bit, at least while I was there.  The massage therapist thought that I might have pinched nerves from everything my body has been through and so she was trying to work those out.  I'm going back to her in a couple of weeks.  It didn't cure me, but it felt good.  I also don't get a lot of pain with the pvs.  I have more tingling and a weak feeling in my arms and legs.  I also get the burning sensation going through different parts of my body at different times.  The symptoms vary day to day hour to hour.  Some days are better than others.  This week was tough with trying to take the Zoloft, but hopefully things will get better.  We all have to try to stay positive even though sometimes it is so hard to.  I go back to the neuro on 4/13 and I'm going to ask for an MRI and EMG testing.  She seems convinced it's post viral, but I don't want to have any doubts.  Please keep in touch and let me know how you are doing.

[ChrisD07]

That's good you are going back for an MRI and EMG then you can rule a lot of things out.  I have the shakes you describe, especially in the fingers, wrist and shoulders and it seems to occur most often in the morning.  It is definitely a stiff shakiness.  My muscles twitch all the time now too, they happen randomly throughout my body and last anywhere from 30 sec to a couple of minutes (scares the **** out of me).  The tingling and burning occur in my arms and feet and also at different times. I get a strange buzzing feeling like having a slight electric current running through them, happens in my hands and feet, I don't know if you experience this too.The neuro told me that I experiencing symptoms of MS but no signs and through a clear MRI and seeing me in person he said that I don't have MS.  He told me that a sign of MS would be hot water feeling cold, a visible intentional tremor, optic neuritis, bad foot drag and the complete numbness of a limb (to the point where the limb ceases to perform the action you intended and feels completely dead).  Since me and you do not have any of these "signs", which would be very apparent and not questionable, your doctor will not consider MS without clear test data (MRI,CSF) and a clear "sign"  of it.

I have been trying to keep positive and continue with my normal lifestyle but it is very hard to without knowing anything and to continue getting these feelings.  I know how you feel Stef, I was so nervous and anxious 3 to 4 days before my MRI.  The worst is that I use to be a energetic, hiking , running, athletic guy and now it seems I don't have the energy or strength to do what made me feel good.  I go back to my doctor March 30th.  Keep me updated Stef, it feels good to know someone else is feeling what I am and that I am not going crazy.  I hope all the tests turn out fine and I will continue to keep you updated on my progress.

-Chris

[par36]

Hi
I have read all your stories and feel your pain. I am 44 and have pvs.  I have been struggling with this for 4 and and half years.  I had a virus that put me in the hospital for 2 weeks. Multiple of symptoms.  Dizziness( I could not walk with out falling), muscle pain, twitching, creepy crawlies, vision problems, tingling, nausea,drooling, flushing and so on. My doc did every test on me. All negative.Went to Froedert,tests negative.........pvs. The dizziness and the flushing was in my sleep as well. The only thing that helps the dizziness at night and the flushes is immipramine. I look ok but they cant see all these symptoms.  my husband left me with a 4 and a 6 year old. I push myself everyday and be thankful I do not have als. THings that also have helped me are large doses of vit c, omega 3, acupuncture, VIt D and magnesium. It took 9 months before I could walk due to dizziness. My best advice is do not let this control you.  I know how hard it is but you can do it.  Also excercise has helped. I am having another mri tomorrow and some more repeat tests.

[Stef1971]

Thanks for writing back. I also get that feeling in my hands and feet and I guess it kind of does feel like an electric current, it's like vibrations running through them.  I wanted to ask you about your fingers.  I know they shake and are stiff.  Do they ever feel awkward when you are trying to grab something?  My pinky finger feels really stiff and weird when I grab the phone for example.  I don't know how to explain it. My fingers work, they are just more stiff and jerky and sometimes not as easy to control.  I tried telling the neuro, but she didn't seem concerned.  I definitely don't have any of those MS signs that your doctor mentioned which makes me feel much relieved.  My neuro examined me in her office for an hour and was convinced it was pvs without an MRI or any other testing.  I did have a bunch of bloodwork done that came back normal.  After the pnuemonia (pneumonia) I had 2 repeat chest x-rays and they were both clear although I still have a cough and they think I might have asthma.  I had mono as a teenager and the neuro said that people who have had mono or more prone to pvs.  Before I saw my neuro  I had gone to an eye doctor for the first time just to make sure my eyes were ok.  I had a great exam and she said I didn't need to see her until another 2 years.  I told her all of my symptoms and she was the first doctor that mentioned pvs.  She told me to drink lots of fluids and eat lots of fresh vegetables and fruits and that it will go away eventually.  I didn't tell my neuro that the eye doctor had mentioned pvs, so I guess I should be happy that 2 specialists are telling me the same thing.  It's hard for me to understand how they can say that just from looking at me and my bloodwork with no other diagnostic testing.  That's why I want the MRI and EMG.  I'm trying to convince myself that it is pvs, but my mind keeps having all these irrational thoughts.  I need to accept the diagnosis but I am so scared of these other awful diseases.  I worked in a nursing home which doesn't help because I saw all kinds of things.  Well, at least we all know that we are not alone which is comforting.  The physical symptoms stink, and the emotional anxiety is just as bad.  

[Stef1971]

Thanks for your encouragement and I hope your tests go ok.  Let us know how you make out.

[ChrisD07]

I have the same feeling in my fingers.  They feel very stiff (especially after physical activity), I have found that buttoning up my shirt, picking up small things and undoing caps have felt awkward and harder than usual.  Most of the stiffness is in my forefinger.  Lately my biggest symptom is my fingers shake a lot, especially when holding onto something small or pointing up.  My hands shake a lot when my elbow is resting on an armrest.  I still have a slight cough, usually at night and my chest x-rays are also clear.  I know what you mean, I am trying to convince myself that the doc knows best and to stick with their diagnosis but the more I read the more I see other people getting misdiagnosed or ignored by their doctor.  It just really ***** not to have a firm answer of it is or isn't while we still sit here and feel these abnormal sensations.  Just don't take anxiety/stress as an answer.  Good thing is that you sound like your in the same boat as me and all my tests have come out clear so far (I have had a good amount of testing too).  I go in for my LP in a week or so, I'll let you know what happens.

I also wanted to know how often you get your tingling sensations and where?  Lately my feet have been almost nonstop tingling (very light tingling).

oh and definitely insist on that MRI (get a c-spine and brain) and EMG, there is no reason why you shouldn't have it regardless of how sure your doc is on PVS.  You need to rule out the major things before PVS is considered, plus it'll make you feel a whole lot better regardless.

-Chris

[Stef1971]

Our symptoms are so similar!  I have the tingling sensations in my feet also.  I feel it more in my left foot and the toes on my left foot feel weird sometimes.  It's hard to explain, I don't know if it's a numbness of the toes or a stiff cramping, I can't quite figure that part out.  I also feel tingling in my right foot and sometimes in both my hands.  I do have the tingling more in my feet and it is a light tingling, although sometimes my left foot will be more intense and it feels like a strong vibration.  I feel it quite alot in my feet, usually all night long and when I'm off my feet during the day.  Very infrequently, I will feel the tingling in my back to the right of my spine.  It feels like something is crawling there, but I haven't had that symptom in awhile which is good.  We sound so alike, it's so good to talk to someone who understands.  I have felt better the last couple of days which is encouraging.  I still have the symptoms, but they haven't been quite as bad.  My muscles still twitch, but not as much.  I go for aquatic physical therapy once or twice a week (because I supposedly have fibromyalgia too) and the physical therapist thinks the muscles are twitching because I am using them more.  Who knows?  How are you feeling?  I am thinking of you and hoping that by knowing you are not alone in this you are feeling at least somewhat better, at least emotionally.  This website has really made me feel better.
Stefanie

[ginak]

I too have all of the symptoms that both of you have named. I have a buzzing, vibration-type sensation feeling in my feet. It is mosty isolated to my left foot, but I feel it in the right foot as well. It worsens at night. I also have really bad body tremors, that I mostly feel at night or when I am still. The ringing in the ear is worse. Have either of you been tested for Epstein Barr virus or lyme disease? I also have low vitamin d levels.

Neither of you are alone with these strange symptoms. I think all of it is a result of infection of some sort and if not treated adequately, all infections have the potential to cause autoimmune disease. Please make your doctors work for you and make sure that you are thoroughly evaluated by mri, body scan, ct scans, and all the bloodwork you can think of. Somewhere along the way, something will come up abnormal.

Hang in there and I will be thinking of you both. Unfortunately, I certainly don't trust the medical community with doing what is in the best interest of the patient.

[ginak]

Hello Chris,

This is going back to your first post about the neuro looking at you like you were crazy.....Sounds like you and I have the same doctor......I promise. Also, the symptoms that your neuro told you about MS don't prove to be true. I know plenty of people with MS whose symptoms start out just like ours. I am not trying to scare you, but just trying to dispel that information that your doctor gave you. When you get a chance go over to the MS forum and you will see quite a bit of similar symptoms that we all have. I pray that this is not MS, ALS, or anything else. I have had a spinal tap and one thing I do know is that whatever this is has attacked my central nervous system because there is a breakdown of myelin present.

[PlateletGal]

Hi Stef1971,

"Post viral syndrome" is another name that physicians are using to call patients who have Chronic Fatigue Syndrome.

I recommend going to several of MedHelp's groups and ruling out other conditions. Also, there are treatments and supplements to help you with your symptoms.

Please consider joining us in the fibro/CFS forum... we understand. Also... we are currently working on a new health page for people who are newly diagnose. It may help you because, as mentioned above, there are other conditions that IMO should be ruled out if they haven't already. (Chairi Malformation, lyme disease, MS, etc.)

http://www.medhelp.org/forums/show/44?personal_page_id=1064

[Padro46]

Finding a Doctor that will listen and help is the hard part--Alot of docs use the word syndrome when they dont know---Has anyone had one discipline that was better than the rest to get help??

[PlateletGal]

I know the word, "syndrome" is a very interesting word that physicians' use to describe certain illnesses. My mother has Sjogren's "Syndrome" and it is called a syndrome although it is an AUTOIMMUNE DISEASE.... just like Guillian Barre Syndrome. (the cause of GBS many times is the flu virus or a vaccine).

[ChrisD07]

That buzzing vibration in my feet seems to be the same as yours and most certaily worsens at night.  the body tremors/shakiness have been troubling me too and seem to get worse when I am still or have done any physical exercise.  I haven't found many people here with vibrations and body tremors, good to know I am not alone.  I have not had lyme, heavy metal and Epstein Barr tests as yet.

Ginak, what tests have you had so far and what did you doctors say about the myelin breakdown and low vit D levels?  have your doctors been leaning to a particular diagnosis? Do you have any other symptoms present? (sorry for the flurry of questions)

I had my MRI about a month ago (perfectly normal), my symptoms have stayed though.  My nuero thought his examination and the MRI was enough to rule me out of MS.  He said even though I had "symptoms" of MS that they are too small and with a clear MRI he says I don't have it. (even though I have read that I cant rule it out with just one MRI) .  It has only been a month but should I push for another MRI or spinal tap?

Thank you for sharing Ginak it has been most helpful.

-Chris

[ChrisD07]

Hey Stef,

Good to hear that you have been feeling better.  With you and Ginak having almost identical symptoms as me helps reminds me that I am not alone and helps me cope.  I have been doing light workouts at the gym lately(to get my mind of things) and have a very abnormal and increased feeling of shakiness and small tremors, but going out and being physically active helps me mentally.

The vibration feeling in my feet what has been bothering me lately because of its consistency and frequency.

I hope we'll have some answers soon and our compared test results and finding should help each other in narrowing down a diagnosis.

-Chris

[ginak]

Hello Chris,

No you are certainly not the only one dealing with the tremors and shakes. Mine happen when I am at rest and as I am about to drift off to sleep. I have had all types to testing to include brain mri/without contrast(Sept 08),Lyme blood test (October 08, 1 positive band in bloodwork and a "small amount of lyme in spinal fluid), brain mri w/contrast(Sept 08), VNG(Sept 08),Cervical MRI w/Contrast (Sept 08),  EVP (Oct 08), Full body bone scan (Oct 08), spinal tap(- for oligoclonal banding, but + for Epstein Barr virus), EMG/NCS(Dec 08), CT scan of the abd/pelvis (Feb 09) EGD (Feb 09,  Lyme testing through Igenix in Feb 09, which revealed some positive and IND bands). I have had an eye exam by the optho for the floaters in the eyes, ANA/Sed Rate and full rheumy workup, which has all been negative.

My neuro told me that it could be possible MS, especially with very high Epstein Barr titers and low Vitamin D. However, my LLMD has given me a clinical dx of lyme disease and I am currently taking antibiotics, which I just started last Saturday. Its too early to tell if I am getting better. Right now, I am in the middle of a herx and it is quite unpleasant. I am not 100% certain of the lyme dx, but right now, I have nothing to lose. I don't want to sit around and allow this to turn into something like MS without doing anything. I have been to over 16 doctors since July of this year and very few seem to care. I am going to my neuro tomorrow and its going to be very interesting to see what he has to say about the lyme dx. I am sure that he will not be too thrilled. I will check in with you and let you know how things go. It really hurts to be in a situation like this, especially when doctors blow you off.

[PlateletGal]

"My neuro told me that it could be possible MS, especially with very high Epstein Barr titers and low Vitamin D. "

Hi ginak,

MS is definitely one of the diseases that is often similiar to fibro, CFS & lyme disease. One of my goals is to work on a Newly Diagnosed page for the fibro/CFS forum.... I will list many conditions that newly diagnosed members (and even previously diagnosed)  may want to discuss with their physician... just to make sure that those conditions have been ruled out.

The similarities between all of these illnesses is astounding. Here is a great article/discussion on the similarities betweeen CFS and MS :

Discussion: M.E. (CFS) vs. MS:

http://www.medhelp.org/posts/show/760781?personal_page_id=25453

[ChrisD07]

Hey guys, a little update from me here.  I went to my GP and he reordered a thyroid and adrenal tests.  I also got a vitamin def, heavy metal and lyme tests, waiting on results.  Also visited my neuro and he ordered a Thoratic spine MRI.  My most recent symptom is a slight pressure in my upper abdominal muscles and lower back near my kidneys. (had this for about 6 days, no pain).  I am so worried that this is a sign of an "MS hug".  Does anyone know if this feeling or a band-like feeling is associated with any other conditions? Like lyme or post viral for instance?

[Stef1971]

I had pressure around my ribs and back when I was first very sick with the post viral.  It lasted for a week or so and then went away.  Right now I am dealing with a very stiff back and I'm not sure if that is post viral or the fibromyalgia that I also have.  I had also gone to physical therapy on Tuesday and the therapist worked on my arms and posture so I don't know if that is what may have aggravated my back this time.  I know that the symptoms of post viral can vary from day to day so I would guess your pressure feeling could be from something like post viral.  It's so scary to have different symptoms come and go.  I may have the same symptoms for days, and then something new pops up and I wonder when it will all stop.  I hope that your tests come out ok or at least show something more definitive that a doctor can treat.  It's so hard to be sick and you can't even really treat something like post viral.  Let me know how you make out.  I'm thinking of you and waiting for my neuro appt on 4/13.
Stefanie

[Padro46]

What kind of doc does the best on the Post Viral Issue--Have been told by two no reason to see me becaus thats what ONE doc has said it is??

[Padro46]

Have you got your test results yet (MRI)

[ChrisD07]

I received my MRI results yesterday and they came out clear =). I have a MRi of the Thorasic spine with and without contrast on a 1.5T.  I am still feeling a bandlike tightness around my ribs and back along with my other symptoms, my finger stiffness seemed to have diminished.  I don' know what to do now..I've have a brain and full spine MRI,EMG, all the bloodwork, x-raps,ekgs and stress echos. still can find my problem.  My ELISA lyme tests came back normal ( but I heard these are inaccurate).  Should I push for a spinal tap just to make sure?  Or go see an MS specialist?

[Padro46]

I am not sure, Chris-I can only tell you my story, which includes all the testing you have had other than the Throrasic MRI--I have not had a LP-Not really wanting to have them punch holes in my back when everything else is clear---I still dont have a Dx other than Post Viral as well--Just trying o hang on till I cant stand it anymore for a LP

[Padro46]

Results from Endo

Testosterone, Total---291                    Scale  250-1100

%Free Testost          1.29        Low     Scale 1.5-2.2

Testos, Free                37.6                Scale 35.0-155.0

LH (luteinizing Hormone)    6.7             Scale 1.5-9.3

FSH                                 5.9              Scale 1.4-18.1

FrT4                                 1.06            Scale  0.89-1.76

TSH                                 1.10            Scale    0.35-5.50

Cortisol, Total,LC/MS/MS    15.9          Scale     4.6-20.6

Prolactin                              5.7           Scale    2.0-18.0

Comments from Endos Nurse---Everything looks Pretty Normal--See You in six months.

[Stef1971]

How's everybody doing?  Anyone feeling any better?  I went to my neuro yesterday and she finally orderd the MRI for me of my brain and spine.  She didn't seem very concerned and I think she ordered it for peace of mind for me more than anything else.  I have had an upset stomach with all of this too and she asked me if anyone had Celiac disease in my family.  It can cause a number of symptoms similar to what I have been experiencing, including numbness, stiffness...  She is having me go for more bloodwork and one of the tests she ordered is to test for celiac.  I just thought I'd throw that out there to everyone in case it's something that you may want to look at.
Stefanie

[ChrisD07]

Hey guys just checking in.  I went to a LLMD about 2 weeks ago and he ordered a comprehensive set of lyme tests from igenex.  Waiting for results on Monday.  I haven't asked my doctor about Celiac.  I guess if my Lyme turns up negative then I will get that LP and blood test for Celiac. (I have also had a upset stomach along with gas for about 2 weeks now).  How did your MRI's turn out Steph, any new symptoms?  How is the Lyme treatment turning out for you Ginak?  I think even if lyme comes out neg I am going to get my hands on some Doxycycline and see if it helps.  How are things going for you Padro?

[Padro46]

Thanks for asking--Saw a Doc Yesterday that advised he does not Think I have post viral issues ordered more blood test 3-hour GTT and others--The ride goes on.

[ginak]

I am on abx-Doxy and a ton of other supplements. I am still having a lot of neurological symptoms. I really don't know what I have. I have been on Doxy for 3 weeks, still lots of ringing in the ear, tremors at night, muscle twitching at night, new symptom of tingling around mouth area. I just don't know anymore. Sometimes I feel like everyone else is getting better but me.

Padro, what is a GTT? Also, if the dr doesn't think Post Viral, what does he think this could be?

[Padro46]

Glueclose Tolerence Test---The doc advised he would search for some things, he is also taking blood checking some Hormone levels as well--He is a Internal Med doc and said that Post Viral should not last as long as I have had it 16 Months--so it must be other issues.  Post Viral is a cacth all when they dont know according to him

[Stef1971]

Well Chris, you will have to let us know how your lyme test results are.  I know someone who has lyme with neurological symptoms and it took a long time for her to get diagnosed.  The doctors initially mistreated her when she was diagnosed and didn't give her antibiotics for a long enough period of time.  She had many of the symptoms that we do and is now better.  It took her a year of antibiotics that she took 4 times a day to get better.  Ginak, hang in there, maybe you just need more time on the antibiotics.  And Padro, I am curios too, why do they think it's not post viral anymore?  You've had intestinal issues, did they test you for Celiac?
I go for my MRI tomorrow (Friday) of my brain and cervical spine with and without contrast.  How is the procedure?  Is it easy?  I am so nervous.  I requested an open MRI because I don't like enlcosed spaces.  I have good days and bad days.  One day my finger stiffness is better, but I may be twitching more.  Then I have less tingling, but my back is tight and stiff.  It is so bizarre to feel this way.  I hate the tremors though.  My hands and arms shake and it makes me feel so fragile sometimes.  My neuro said that I am not weak and that the sensation of weakness that I am feeling is fatigue.  She also mentioned chronic fatigue syndrome as a possibility.  Who knows?  I'm just thankful for this website.  When I feel really down I read our posts and realize that other people have the same symptoms as me and I have hope that we are all going to be ok.  I am trying to take the advice of one of the doctors that I work with and to try not to think about what my body is doing as much.  He suggested that if I can just try to forget about it (much easier said than done since there are always symptoms) one day it just might be gone.  He was giving me alot of examples of patients that he has had who let their mind kind of take over and how it made everything  worse.  I am not minimizing what we are all experiencing, because I know firsthand that my symptoms are not in my mind.  I am just trying to focus a little less on them so I don't get so freaked out.  I hope that after my MRI tomorrow I will feel better.

[Padro46]

Doc advised he did not think it was Post Viral due to the time that has gone by--he advised he could see 15 weeks NOT 15 Months

[ginak]

Stef,

Sounds like you and Chris are in the clear. Padro, it sounds as if we have not made any more progress. Are you all still having symptoms? This is such a lonely feeling.

[ChrisD07]

I am having major symptoms still, major burning/tingling in both hands, joint popping (sometimes pain), stiffness and tightness in my ribs(this one is 24/7 for the past month).  I am pursing lyme, my Igenex tests arent in as yet but for the past week I have put myself on 400mg of Doxy a day and haven't seen any major differences. I will see a Stanford ID doctor this Tuesday.  How are ya doing on the abx Ginak?  How did your MRI's come out Stef?

[Stef1971]

I feel very fortunate that my bloodwork and MRI of the brain and spine have all come out normal.  The neuro said that everything looked normal and there was no sign of muscle damage.  I see her for a follow up, but not until June.  I still too, have symptoms, but they are getting better.   I have more good days than bad days and there are times that I can say that I actually feel like I used to.  Maybe things will get better for you Chris.  I felt like you for a good 4 1/2 months, constant tingling, burning, twitching, tremors...  I hope for you and everyone else that eventually your symptoms will subside.  It is an awful thing to have no control over your body and the sensations that it can give you.  It is so scary and frustrating.  I hope that I continue to get better and that me feeling better will give all of you hope that it can happen to you too.  I hope that all of you can have good days too.:)

[ginak]

Chris,

I was on the Doxy for one month and it was making me way too sick. I am now on Doryx. I still don't feel any change in my neurological symptoms at all. I have not had mris since September and I am really just at a point that I don't know what to do about any of this. I feel very down today. I know that if this is lyme, it can take a while to feel better. I have been at this for about a year now and I am losing hope. I basically started on the abx because I felt like I had nothing to lose.

Stef, I am glad that you are feeling better. I wish the same for myself and others.

[Padro46]

What did the Nuero on your last visit advise what she thought was the cause of your issues still Post Viral??

[Stef1971]

My neuro didn't really say why she thought I still had the symptoms.  I think she ordered the MRI more for my peace of mind than anything else.  She did mention chronic fatigue but never was definite about what it was.  I think she thinks it was a prolonged post viral, she doesn't seem very concerned.  I had to push her to do the MRI and bloodwork.  She thought it could be Celiac disease, but my bloodwork was normal.  I think she thinks there is some link between the fact that I had mono as a teenager and that people that have had mono are more prone to post viral.  Also, because I have fibromyalgia, it sounds like post viral and chronic fatigue kind of go along with that.  It's so vague, I don't know if these doctors sometimes even know what is going on with us.
Ginak, I am so sorry that you are having so many symptoms.  I was talking to someone that had neurological lyme and she was on antibiotics for a whole year just to get better.  Maybe time will help.  Doxy is the worst, I couldn't handle it when I was on it for a week, that's good you switched meds.  You are in my thoughts.
Stefanie

[Padro46]

I am finding the Post Viral Dx after 16 months very hard to take as my problems--But cannot find out anything else.

[ginak]

I am right here with you Padro! Hang on in there. I am glad that others have gotten better. I don't really know where to turn either.

[Dr Vinod]

It is now commonly accepted that all represent a postviral syndrome whose dominant symptoms include exercise-induced muscle fatigue.
There is no cure for chronic fatigue syndrome.
Chronic fatigue syndrome (CFS) is a condition that causes extreme tiredness. People with CFS are so tired that they are unable to carry on normal activities for a period of at least six months. They also have other symptoms, such as pain in the joints and muscles, headaches, and sore throat. There is no single known cause for CFS; it appears to result from a number of factors.
More detailed studies showed that people of every age, gender, race, and income group can get CFS. The group most at risk for the disease, however, is women aged 25 to 45 years.
Estimating the number of people with CFS is difficult because its symptoms are so similar to those of other diseases.
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, can be used to relieve pain and reduce fever. Antidepressants can be used to help patients relax and feel less depressed. Antianxiety drugs, such as benzodiazepines are prescribed for people with anxiety that has lasted for at least six months.
Nutritional supplements such as vitamins A, B12, C, and E, as well as some minerals, are used to treat CFS. These supplements are thought to improve the immune system and improve mental functions. Some CFS patients report improvement after using certain herbal medicines, such as echinacea ,garlic, ginseng, ginkgo, evening primrose oil, shiitake mushroom extract, and borage seed oil.
Take care everyone!

[Padro46]

Post Infectious Encephalomyelitis any thoughts this is from last Nuero visit??

[boron]

Hi. My uncle had that band-like ribs tightness - it was Lyme. When Borrelia attacks nerves, it's called neuroborreliosis. Antibodies against Borrelia can be found in spinal fluid (by lumbar puncture). At the time Borrelia is in nervous system, it can already be cleared out from the blood, so negative blood test doesn't exlude neuroborreliosis.

Do you have upper (under ribs) or lower (left, or right) abdominal bloating? What happened 2 weeks ago - you started with some medication, changed diet..?

I have some medical education, and I've studied these things a bit lately...

[boron]

Hi, would you mind to disclose your history of your neurologic symptoms (tingling, burning, back of the head issue...). I'm monitoring Padro's issues for quite a while now, and trying to figure out the cause.

Have you ever had low body temperature, poor appetite, gaining weight, slow heart rate?

[Padro46]

Boron has been a good friend to me for some time and will really have some good imput--I know you and I have talked in the past Boron is a good source   Padro

[ginak]

Boron, I sent you a PM. Padro thanks for you help and your concern. Keep your head up buddy!

[Padro46]

Wont go into the Technique--will skip to findings
Findings:
L1-L2: Within normal limits

L2-L3: Within normal Limits

L3-L4:Mild changes of degenerative disc disease are seen at this level with mild lateral bulging of the disc margins. Mild facet arthrosis is also seen posteriorly. No HNP is identified.

L4-L5: A broad based,3mm, posterior anular disc bulge is present.  In concert with facet arthrosis, there is mild to moderate narrowing of the neural foramina seen bilaterally along with mild concentric canal stenosis.  There is some increased signal present within the lateral margins of the posterior anulus suggesting anular tears.
L5-S1: Mild degeneration of the posterior facets is seen at this level. No HNP or spinal stenosis is seen.

Signal within the vertebral bodies is normal throughout.  The conus ends normally at the T12-L1 Level,

Impression:Impression:
Mild nueral foraminal and spinal stenosis are seen L4-5 level due to a small broad-based disc bulge and posterior element hypertrophy.  There appear to be small anular tears at this level as well.

Thoracic

Findings:  Changes of degenerative disc disease are seen in the mid and lower thoracic spine.  There is a broad based, 3-4mm, central disc protrusion seen at the T5-T6 level resulting in mild spinal stenosis.  The canal diameter has been narrowed to approximately 8mm.  A 2-3mm disc protrusion is also seen centrally at the T6-T7 level resulting in mild spinal stenosis.  Canal diameter has also been narrowed to approximately 8mm at this level.  A broad based,2-3mm disc bulge is seen at the T7-T8 level.  Canal diameter has been narrowed to 9mm, A minimal,1-2mm disc bulge is also seen at T8-T9.

Signal within the vertebral bodies is normal throughout.  There is no evidence of a significant compression fracture seen.  Signal within the thoracic cord is normal as well.  No abnormal enhancement is identified.

Impression:Impression:
1. Mild to moderate spinal stenosis is seen at the T-5-6 and T6-7 levels due to small herniated nucleus pulposus.

2. Mild spinal stenosis is seen at T7-T8 due to a braod-based disc bulge.

[Supastah]

In January 2008 I had a flu shot..Four weeks lated I was flat on my back and thought
I ws going to die...I had no fever, vomiting, etc...I just coldnt move..
I was so healthy that I didnt even have a regular Dr...My boyfriend carried me to
the hospital so many times...The leg pains were so bad that I wanted to cut them
off...Too make a VERY long story short, Symptoms I had were: severe leg pains,
difficulty swallowing, eyes kept trying to close, burning fee..As the months wore on,
I have seen every DR possible, had every test possible, some multiple times..
I have 3 grocery bags of meds that I could not deal with..I hae dealt with more
narcissium by male and female DR's than I ever care to...It wasnt until I found a
very caring Pain MGT Dr that I have started feeling better..Yes, you DO have to
try to be calm through all this because the stress and anxiety makes it worse..
I have doubt I have Post Viral...It was not Guillian Barre because Spinal Tap was
normal...Nerve biopsy was normal..Im finally just on Tramadol which has saved
my life and Combunox for break-through pain..I am on my 3rd  Epidural Steroid
injection and it works like a miracle..It does not sure you, but gave me about 5
weeks of being pain free so I could re-group and start again...It does get better
but it takes ALOT of time...You will never find the cause so stop looking..You
need to treat the symptoms and thats working with meds, treatments and injections
that help you..Do not settle for a Fibro diagnosis..You have Post Viral Syndrome
and you my friends are not crazy...There are thousands of us out here with this.
Every virus is different and the way it effects your body is different so no two of
us may have the same symptoms..Just remember that you ARE sick you
really ARE in pain and you dont have to prove it to anyone..Keep fighting to feel
better and get rid of all those DR's and find one very caring Pain Mgmt Dr..
Im a year and a half into this...As a single Mom who runs a business I had to
fight everyday to get up and get to work..I cried everyday, but promised myself I
woulnd not do it in front of my son anymore..Find your time to cry..Its OK..
So,,Tramadol, Combunox, and steroid injections have made me be able to live and
I also set boundaries..If i cant make it to something or dont want to so something
I dont do it..Love yourself..take care of yourself..We all validate you..

[StormyRenee]

This sounds very much like Transvers Myelitis. I was diagnosed in 7/09. Back in 1/09 I got a cold. About 2 weeks afterwards I started to have a bunch of weird neurological symptoms. Numbness,tingling,burning,itching,bowel/bladder issues and a host of things I had never felt before. I went to a ton of doctors and had tons of tests. All were normal except for an ANA tests. Unfortunatly they were doing the wrong tests. They were not looking for a needle in a haystack like TM. It is pretty rare. I finally found a neurologists who knew what I had right away. TM is an autoimmune reponse where the body attacks the spinal cord. It happens when there is stress on the body like a cold,surgery or stuff like that.Symptoms are like MS. But unlike MS, TM  does it's damage and is not progressive. It can take up to 2 yrs to recover from TM. 1/3 recover fully,1/3 partially recover and the remaing 1/3 don/t recover at all. But there is a greater chance of developing MS if you have TM.

[velvetnsteel]

I am so glad I found this forum.  I have many of the symptoms all of you have spoken about.  In late December, my husband & I had mild cases of H1N1.  He got better fairly soon.  I developed the following symptoms:  Severe pains, redness and tingling of the R hand; swelling & severe pain R foot; severe sciatic like pain of the left butt and hip radiating down the L leg to the knee, feeling like someone is cutting my leg off and leg feels like it is going to buckle; sandy feeling in the eyes; low energy; occasional brain fog; occasional nausea; occasional neck pain.  Went to a Naturopath who put me on a wellness regime to build up my immune system...still going to him; tried acupuncture which did nothing; had extensive blood work done which came back PERFECT.  What is VERY interesting to note is that I have severe allergies and asthma, ALL OF WHICH HAVE DISAPPEARED with the emergence of this.  I am currently diagnosed with Sciatica which my Doc thinks I acquired from not warming up enough at the gym.  He also thinks the swelling and pain in my right foot are due something happening at the gym.  I am currently going to physical therapy which is helping, especially the exercises, the deep nerve stimulation and hot, wet heat.  What the PT is having a hard time with is the fact that my symptoms peak up and down, not a normal recovery period for sciatica.  My Doc also just diagnosed me with Post Viral Syndrome.

What is interesting is that about two years ago, had milder but similar symptoms which lasted 6 months.  Started at work with one person.  I then had clients, many of whom were also complaining of "pain all over."  Reported it to administration who did nothing.  

This forum is immensely comforting.

[alissaRN2b]

have you all seen the new studies on the virus XMRV that is said to cause PVS (aka chronic fatigue syndrome).  Also most people with CFS also have Fibromyalgia - and Fibromyalgia has a whole slew of symtpoms (many like you are all describing), not just achy muscles.  FM includes the insomnia, the feeling of having swollen hands & feet (or other body parts), the itching, burning, jerking....   Think many of you here need to do more research about Fibromyalgia and CFS because it's most likely what is going on.  I've had it for years and years - it never goes away just comes in cycles whenever my body is under any kind of stress (like a cold or when I had pneumonia in December 09, still haven't recovered from that!).  So stress reduction and staying healthy is the key to reduce flare-ups!  MS tends to give you some scary optical symptoms (severe eye pain, blurry or double vision) which is what gets the docs to start looking for an MS diagnosis (my sister has MS).  

[jellylegs]

just wondering did you ever get a proper diagnosis or reason for symptoms

[baaa295]

Your symptoms are identical to mine,I have sensations of weakness in my right arm, some days my left arm also feels heavy and weak, and I have constant widespread twitching mostly in my legs, but the twitching is everywhere all day long. all of this came on after I had walking pnomonia. Very stressed and afraid it could be something serious. Dr doesnt seem too worried about it.

[gr82bme]

Hi,
I hope your feeling better since this was posted in 09.  My daugher was diagnosed with post viral as well.  She has had many of the same symptoms as well.  She has had numerous test and exrays.  After 6 months of getting nowhere I started doing TONs of research.  Found that milk allergies are linked to many post virals.  Mentioned it to the dr. and he said that there is no whay milk could cause all her symptoms including the severady.  Well 4 days of a milk free diet and she is pain free.  It's a hard diet to follow but Damn is it worth it.

[Poinsiana]

How are you feeling now? I have been having the same symptoms for a year. All docs say post viral and will go away with time. Are your symptoms better almost three years later? I hope you receive this post.

[dkorts1]

hi Stef
I am writing you this in 2013... hope you get it..
I had similar symptoms for 6 months last year and now they are back for 2 months already
All I wanted to ask you-did your symptoms ever come back? how do you feel today?
Mine were caused,I think , by CMV infection that become reactivated..