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,
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.
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.
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 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.
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.
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?
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.
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 numbness, tinglinmg. ect. will go away quicker. good luck. Kevin
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
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.
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.
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.
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, which I have never had in my life. After the pnuemonia came the asthmatic bronchitis and while I was on the steroids and meds for that, I started with all of the neurological symptoms.
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.
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.
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.
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.
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!
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!!!!!!!!!!!
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!
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.
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.
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/).
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!