can this be fibro??

[nursejenn1012]

For the last year i've been experiancing some bothersome symptoms.  Started with heavy tiredness, i wake up ok, but give it 5 hours or so and would need to take a nap.  My upper arms and legs started getting muscle spasms, really bad, nothing helped, thought i would have to go to the er.  All my bloodwork was negative.  Not long after I was diagnosed with a very fast heart rate and medicated for such.  I started falling and unable to keep my balance, as of now i fall a few times a week.  The pain in my arms and legs is so bad sometimes i cant sleep.  Sometimes i get numbness in my hands or feet and pins and needles.  I have to pee all the time, right after i go, i feel like i havent even gone--workup for infection was negative.  I've always had migraine headaches, but as of this year they have gotten worse and recently stared taking topomax.  This seems to help somewhat with the feeling of "standing in an ice bucket" burning.  I have developed a chronic ringing in my ears, 24/7.  Get flashes of light in my eyes.  All the time heartburn, does not matter what i eat.  My thought process is off, unfortunatly, im unsure if this is a symptom or a cause.  I am not a depressed person, maybe slight anxiety over this, but lets face it, who wouldnt be.  I've been worked up neurologically by 2 specialist.  In the past had endometriosis and ovarian cyst removed x2.  My pain/ symptoms seem to peak about 2-3 days before getting my period........I have an appt with a rhumatologist on the 7th of jan.  I think the dr's think i am crazy!!  Please help

Thanks

[concerned621]

I didn't want to say anything when you said the doctor put you on it. I take oxycontin. When my doc put me on Lyrica I felt higher on that than I ever do on oxycontin and for me anyway the feeling never went away, at least not in the 3-4 weeks I tried to take it.  My vision was also affected. You mentioned you are very sensitive to meds, I personally think this one is not the one to start with and I personally think they will find that it's not a good Fibromyalgia medication down the road.  That is a non-medical personal opinion.  Nursejenn, don't put up with the harsh side effects, call the doctor.  

[dustybrown]

That "high" feeling goes away quickly. Your body will adjust fast. I felt the same way when I took Lyrica in the beginning, but after about 2 weeks my body finally started to adjust and I didn't even notice I was taking anything AT ALL. Remember, it's an anti-seizure medication, so it works to slow down nerve impulses in your brain. It takes a little bit of an adjusting to, but your brain will adapt quickly.

I would be patient before you decide Lyrica is not for you- because all Fibro medications are going to carry with them some form of side effects that you will need to work through in the beginning. Unless I have an allergic reaction, I give all of my new medications at least 6 weeks before I throw in the towel. Most of them do not reach their full benefit potential until at least 3-4 weeks into the treatment because of the adjustment period that your body goes through.  

When you first get your diagnosis and you begin to seek out medication options is the most frustrating aspect of Fibro. For most people it does take a good 3-6 months to find the right "cocktail" of medications that are right for your body.    

[nursejenn1012]

At least i know im not crazy now.  I feel higher then a kite with just 25 mg of lyrica, i dont think im going to be able to handle the 50 mg bump up.  I have alot of pain in my chest right now.  Maybe there is another medication i can try??

[concerned621]

Okay, now we know. I figured it was. Let us know how it goes with Lyrica.  And how you are feeling about the diagnosis.  take care and I wish you the very best!

[nursejenn1012]

I was diagnosed today with fibromyalgia, i had all the tender points.  He started me on lyrica, just a small dose because of my history of bad reactions to medications...i hope it helps

[jonney4141]

yes i am experiencing pain everywhere, and it keeps moving all over the place, one day it may be a spot on my arm that hurts very bad, next day it's gone and will have moved to bottom of my feet or hips or top shoulder to wrists and elbow. my doc sent me to rhemy and that's where i found out i  had hep c which i am treating now. rhemy said he could do nothing until i get this straight, so i have a few months left of treatment. i feel bad too constantly asking for pain meds and describing these symptoms, but i am so sick and tired of being looked at like a drug addict or hyprocondriac, i have much more better
things to do with my life than constantly going to doctors (i never went to doctors until all of this pain started) what i have experienced this year has been pretty sad in the medical field, way way way too many mistakes from them, i have insurance and it is not cheap and this is how you get treated. sometimes i feel like i am in a herd of cattle just getting pushed thru the system, i am now doing alot of research with anything that they  tell me, so that i know what the heck they are talking about, and alot of them don't tell you, many things i found on my blood test results.. it's nuts when one day you are working and everything is fine, and the next day you can't work and your whole life is turned in another direction and your mind wants to do it, but your body won't let you.

[nursejenn1012]

they rhumatologist office called me today, they had a cancellation and asked if i wanted to come in tomorrow at 8am.....so i get to go tomorrow.....yay!!  help is on the way????  

[uk2]

con is on to something here does say that the avp can cause angina type pain in your chest/rib area so that might be why you have the rib pain and cause pounding and dizzyness could explain your balance issues but a blank to what else i would of said MS but not so as you had tests so it must be fibro have you been to rheumy i have awful balance i walk with a crutch i do exercises when i can to try and improve it i also have constant ringing in my ears and this causes me balance issues they are checking out ent problems could this be the source for you that cause dizzyness and balance problems. let us know how you get on. i used to be a auxiary nurse miss working.

[concerned621]

Okay, I'm going to look up AVP. I'm curious now. MVP has all these odd symptoms, I'm wondering about AVP.  I figured you wore good shoes.  

The pain in your arms, legs, fingers, ribs and head.  WOW...... We have to figure out what is going on with you!!!!!!  Where in your head? neck area?

When they test my pressure points they don't press hard, they don't want to make you feel worse.  Test the area just above your elbow, just above your knee cap to the right of your knee cap, on the back of your neck just below your skull line.  Some days they all hurt, or just a few areas hurt.  Some days with me you can't even touch me.  They say there use to be 11 points, then 18, now they say there are more.  Also, the ribs is a pressure point and it sounds like you have that.  
I think it could be FM.
When you said they peak before your period you got my attention, when I was in my 20's&30's that is when I first started noticing something was not right with me.  And now my FM symptoms are so awful right before my period.  

[nursejenn1012]

AVP is aortic valve prolapse.  When they test the pressure points do they press hard??  because when i was checking myself, they hurt, every one of those spots hurt, and for like 20  mins after.  i didnt push real hard.  I wear dansko shoes, there a great brand, pretty much wear them all the time, expensive, but great support for my back..

I never get back pain tho, just in my arms, legs, feet, fingers, ribs and head..........strange huh.......??

[concerned621]

Well I can tell you YOU ARE NOT CRAZY.  WHen I was diagnosed with fibromyalgia. I remember standing in the doctors office, I was in my early 30,s. I had a baby and an 8 year old and I was building my career. I thought I was dying. I was in so much physical pain. I stood there and asked what is wrong with me.  He finally said I think you have this thing, it's called fibromyalgia.  I said now what.  Wow I had no idea what that would lead me to. So many doctors that treated me like I was making it up, like I was crazy, I was put on anti-depressants, told I was bi-polar, they were all focusing on depression. I finally blurted out at one appointment. I am depressed because no body can tell me what is wrong with me.  I ached all over all the time.  
I have taken medications that caused ringing in my ears. If I'm not mistaken Topamax is for migraines.  For nerve pain ask about neurontin. It's my least favorite but it helps. Also, Methocarbonal.  It really helps when I am in pain with spasms and nerve pain.  It too upsets my stomach so I always take an enzyme with it.  
What is AVP? Also if you are on your feet as a nurse I'm sure you have great shoes.  I wear "hafflinger clogs."  It is excellent for support and helps me avoid foot, back and nerve pain if I'm on my feet a lot.  
I'm sorry I couldn't help. Keep in touch if there is anything I do even just listen I am here.

[nursejenn1012]

I do go to a cardiologist, have had a few echo's done, no mvp, a light avp, would not cause these symptoms tho.    My main problem is with extremity cramping, balance and numbness/tingling.  The heartburn, ringing in ears, yeah its there all the time too.  I accounted the heartburn to the topamax they put me on, which i thought would have helped the pain in my legs, but i was wrong...i think this may have gotten way too far out of control for that.  I dont feel i need an anxiety medication, i;ve never felt my anxiety level was high enough for that, the anxiety that i have is in regards to, where am i going to be in a year, am i going to be able to walk, why are the drs treating me like im crazy, why cant they find out whats wrong.  In my profession, im not allowed to have those medications in my system when working so it would be difficult :(.  Thanks for the response.  I had several tests, ss-a ss-b, ana, lyme, as far as RA goes, my joints dont really hurt, its the long muscles,  but i dont believe i was tested.......

[concerned621]

I have FM and it could be that. Another thing that came to mind is Mitral Valve Prolapse. I thought this condition was heart disease.  It's a nervous system disorder.  Please look it up online. It causes a number of symptoms that you would never think of.  Mine was discovered by accident. After a back surgery they thought I had pneumonia.  It was MVP.  I was so upset thinking it was heart problems which it does affect the heart valve but there is more to it. And it does cause anxiety and a host of other symptoms.  Don't be alarmed  though.  Worrying until we know what it is creates more stress, please try to remember that.  I learned that the hard way.  

For the heartburn I am a big advocate of Essential Enzymes. Its a capsule form, you take one with each meal.  It helps you digest food. You may be very acidic and nothing more.  Try to get this either at your health food store or online.  Soy is also hard to digest so soy is in everything.  Check that out as well.

For anxiety and especially a few days before your period talk to your doc about anti-anxiety medication. I took that for years in my 30's. Our hormones change every 7 years.  I'm not sure how old you are but it could be that.  I get horrible symptoms still before my periods, anxiety, I also have fibroids which cause cramping and heavy periods.  When I was younger my gyn gave me anti-anxiety meds to take 5 days prior to my cycle. It helped so much.  And you don't develop a need for the medication long term.  
I hope this helps, good luck.

[patsy10]

You may want to get tested for Lyme disease.

[dustybrown]

The Rheumatologist will run some more test to rule out any inflammatory arthritic conditions that could be causing your symptoms like RA or Lupus.

I myself am sick, and before I was diagnosed with FM/CFS, I never really had trouble sleeping per se either, but I did have trouble with my bladder waking me up at night once or twice (and even up to five times a night on a bad night), so I wasn't getting restful sleep. I could fall back to sleep just fine, but it was interrupted quite a bit. Have you seen a Urologist? They might want to check you for Interstitial Cystitis. I was checked for this as well, but it turned out I just had Irritable Bladder, which is very common for people who have fibro.

It does sound a bit crazy to treat the pain by treating the sleep cycle too, but both are really important if you do have FM. If I don't get enough sleep, my body will hurt more.

Your symptoms do sound a lot like Fibro, but Fibro mimics so many other conditions. I would encourage you to be patient and hang on to hope until you see your Rheumatologist. I understand how hard it must be.

There are a few things you can do while you wait for your appointment with the Rheumy. Make sure you have a good ice pack and a heat pack for the microwave that you can put on your sore muscles. Try not to drink any fluids 90 minutes before you go to bed- especially anything with caffeine. This may help with the Irritable Bladder if you have problems at night like I did. I am not sure if you do. If you have problems during the day, you may want to cut out any caffeine altogether or limit it.

It also sounds like you've got some migraine issues and sensory problems that may or may not be attributed to fibro or hormonal problems. It's very possible. I take Topamax too. I've been on it for about 9 months and it has helped me so much with my migraines and head pain and my nerve pain. Keep in touch with the forum and please let me know if there is anything I can clarify.
-Dusty

[nursejenn1012]

I would say ms is completely ruled out, neg. mri, neg evoked potentials.  Had  my thyroid looked at already, negative.  I've been through a years worth of various blood test, scans, other test--pretty sure my insurance company loves me.  I've been in physical therapy since june.......2 days a week, to try and get some balance back and get rid of some of the cramping.  I often cancel tho because im to tired to go, or my head hurts too much, or im just plain too sore and dont want to be touched.  Sometimes I have all i can do to fall asleep.  Im not one for using sleeping aides, as i live alone....my problem is not with sleeping, but pain....i have taken advil, ultacet, percocet, the muscle relaxer the md gave me all within an hour a couple of times due to pain, it did not touch my pain.  I might go crazy from this alone...

[dustybrown]

Hello and Welcome,
I am sorry to hear of your horrible symptoms and your trials and tribulations with the doctors. Have they completely ruled out MS? or any other neurological condition at this point? Once you get to the Rheumatologist my guess is they will probably send you for some more additional testing. I would consider seeing an Endocrinologist as well to rule out any thyroid, adrenal, hormonal or pituitary dysfunction. It's very possible that your symptoms are caused by Fibro, but unfortunately you have to rule so many things out first before you'll get the final diagnosis. Keep us updated here and good luck.
-Dusty