I am 37 years old and was diagnosed with fibromyalgia about 11 years ago. My doctor at that time in another city thought I might have MS but I moved before getting in to see a neurologist and my doctor here didn't think it was necessary. Since that time I have been having more and more syptoms like bladder problems, severe pelvic pain that comes and goes, burning hands, episodes of hot spine, dizzy spells, electric shock like pain runing up my arms, tremors almost constantly, migraines all the time, extreme exhaustion yet inability to sleep and severe muscle spasms throughout my whole body. I have also just recently started to mix up my words and slurr my speach occassionally.

Since I have started having the electric shock like pain, my doctor is sending for a consult with a neuologist after my chronic pain physician suggested it.

I feel like a hypocondriac/nut job most days. I used to be a very active person and I am unable to do most things that I did before. I am just so sick of being sick and tired! I am wondering if all my symptoms are just related to the fibromyalgia, muscle tightness and spasms? Some of my symptoms sound like MS but is the chronic muscle & jaw pain?

Frustrated after 11 years of wondering!
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First Helper DiamondBlossoms
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replied June 15th, 2009
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Honey you are ok..Fibro has soooooo many things that you can feel like you are going crazy..Fight though so that you get answers..It is draining and wears you down at times but do't give up..I have had fibro. for over 15 years now..I think it's more like 17..All that you mention I have..Except I have other autoimmune disesaes as well..You need to have an MRI of the brain to see if showsany white spots..My MRI did but even still the doc siad the spots are inconclusive..
Mine began after a bout of pneumoina..I never got
well..I think most people can trace back to when it began-an injury, illness, a fall..Do you rememeber anything? I think once you see the neuro you will hopefully get more answers..My help began with a Rheumatologist who knows autoimmune diseases..Some say they do but he does..I wish you the best..kd
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replied June 18th, 2009
Thanks KD,

Yes, I have seen 2 seperate rheumatologists over the past 10 years; neither being very helpful.

I am pretty sure that my fibro was a result of having 4 surgeries and 2 high risk pregnancies, resulting in premature labour and extreme sleep deprivation, (which lasted over a year). I know my electrolytes were totally out of wack.

Thanks for your post. I guess all I can do is try and keep going for my kids.
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replied October 25th, 2009
I've also had 2 c-sections and my right ovary removed. Ever since I have had health issues too. Numbness that comes and goes from body part to body part; Tingling, muscle twitching; eye floaters that even get burry through lights; dizzy; Burning; hot spots; soreness; I'm turning into a internet health research crazy person. Alot of my symptoms show up in the same places and then I'll have a new sensation. I can't remember the last time I've been symptom free. I am also high risk pregnancy and have put my body through the ringer!
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replied November 12th, 2012
Oh my goodness... You have the exact life as me lol. 2 c sections, and my health spiraled out of control after the second
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replied April 19th, 2010
i have fibromyalgia and finally after going to the doctor for 6 years and being told i was deprressed, crazy. etc. i found a doctor to offically tell me i definately had fibro. it was a huge relief. that was almost 8 years ago, i have also had symptoms of MS the whole time but no lesions on my brain so they will not make that diagnosis. now i have a positive ANA blood test result and i am waiting for a appt with a rhuematologist to see what is going on. stay strong, keep being your own advocate at the doctor, and yes you will feel like you are crazy sometimes but you are not, there are alot of people out there just like you ... good luck!!! it is a constant battle of searching for answers all the time!!!
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replied April 30th, 2010
???help
i am so glad that i am on this morning. i am 34 and my symptoms started about 6-8 months ago. first just hurting all over adn now my left arm and both hand go to sleep to the point that they are going to blow up from so much presure. i think i get 4-5 hours of sleep from this. doctor rules out carpel tunnel, becasue of all my other ailments.im exhausted all the time, arms feel heavy, blurry vision, dizzy, restless legs, you name it i have it. and i feel extremely stupid like no one believes me that i really truly hurt and that folding a simple load of laundry takes everything i have in me. im guessing fibro, ms idon''t know. i take savella currrently to try it out and doc 5 other meds for hbp, allergies ashtma, pmdd, and a muscle relaxer. im tired and just want some answers. thanks for listening, no one seems to understand. anyone with any suggestions?
Kristie
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replied April 30th, 2010
i am so glad that i am on this morning. i am 34 and my symptoms started about 6-8 months ago. first just hurting all over adn now my left arm and both hand go to sleep to the point that they are going to blow up from so much presure. i think i get 4-5 hours of sleep from this. doctor rules out carpel tunnel, becasue of all my other ailments.im exhausted all the time, arms feel heavy, blurry vision, dizzy, restless legs, you name it i have it. and i feel extremely stupid like no one believes me that i really truly hurt and that folding a simple load of laundry takes everything i have in me. im guessing fibro, ms idon''t know. i take savella currrently to try it out and doc 5 other meds for hbp, allergies ashtma, pmdd, and a muscle relaxer. im tired and just want some answers. thanks for listening, no one seems to understand.
Kristie
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replied April 30th, 2010
Hi there..
I read your post and it's almost like reading a list of my own symptoms. I am 37 and was diagnosed a little over 4 years ago with FMS. We traced my first symptoms to about 10 years ago. I went all those years from doctor to doctor, always treating the individual symptoms. It never occured to anyone until I found my current doctor to put them all together and figure out something from there. I had tons of blood tests, MRI's CT scans, X-rays, nerve conduction tests....you name it, I had it. Other than finding that I needed surgery to release a trapped nerve in my left elbow and another to repair a tear in my right shoulder, nothing else significant came back. My doctor along with my rheumatologist finally diagnosed FMS. I have been on and of a number of medications and I have found that it is a matter of finding your personal right combination of medicines.It takes some time and I have also found that just because something works right now doesn't mean it's going to work 6 months from now. And I have also learned that some medicines (for me anyway) can be started and stopped as the severity of symptoms increase/decrease. But I never do this without the support and under the care of my doctor. Right now I am only taking Tramadol (The only thing that gives me any kind of relief from the full body, from my chin to my toes, RLS type sensations I have. I have had this for 5 years, 24/7. Probably my worse symptom) Lamictal (For nerve pain and a mood stabilizer) and for the muscle spasms I take Baclofen. I was taking the Baclofen 3 x a day but right now I have just gotten out of a year and a half flare and am only taking it two or three times a week. I have also been on Savella (tried it twice and my body just couldn't handle it) Lyrica, Elevil. Xanax, Cymbalta, Neurontin, Ativan, Zanaflex, Flexeral, Norflex, Darvocet, Soma Compound w/Codiene, and I am sure a few more. Like I said, its a matter or trial and error. Oh, and I have severe insomnia that if I don't take something (right now it's Lunesta again) I will only sleep about 3 hours every 3rd to 4th night. So I will go 3-4 nights in a row without sleeping at all. It's terrible.
So I told you my whole FMS life story (sorry to bore you, lol) to say that everything you have said is what goes along with this. It is a hard road to follow but if we're not given a choice in the matter then we have to figure out how to cope with it sometime. It took me a long time to accept that I have this. There are some symptoms and things that come with it (Like Trigeminal Neiralgia. Which causes pain in my face, temples, head and jaw that literally brings me to my knees and at it's worst I end up in the ER) that I just have had to figure out how to cope with, try to find things that lessen the severity of the pain and try to live as good as I can.
I totally understand your frustration and I am here to tell you...Yes, there at A LOT of people who understand. I hope you are able to go check it out and get some support. I know it just made me feel better to know that the symptoms I have are normal and I also got advice on how to better cope with them and how to talk to family/friends...all kinds of stuff.
Good luck...Stacy
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replied April 17th, 2011
Fibromyalgia or MS ?
You are certainly not alone, and I understand entirely how you feel.

I was diagnosed with fibromyalgia over 10 years ago, following 15 years of total frustration and pain. Last year , although suffering many of the varying symptoms of fibromyalgia I noticed some changes. While I had numb hands and restless legs at night, I could easy this with medication and a little excercise in the mornings. The pain was also manageable with large doses of tramadol, coedine and baclofen, however last year I had numbness in my right arm, left side of my face, behind my left shin and under my left heal. After 2 weeks I became concerned as it was still numb with no intervals.

I went back to my doc why was quick yo diagnose possible diabetes. I wasn't happy with the diagnosis and asked to be refered to a neurologist. Which surprisingly he did, but also commented that he was referring me purely so he could put my
Mind at rest that it wasn't MS.

3 months later my MRI results showed I did in fact have MS. Relapsing remitting which is now being reviewed and looks like primary progressive.

Anyway, just wanted to try and re assure that although alot of the symptoms of both can be the same, to experience them both shows the differences. Coping with bOth is something I am learning to do and can usually spot the difference now.

If your fibro does turn out to he ms also do not be too concerned. There are list of people who will understand and help you through, especially on these notice boards.

I wish you well
Sue
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replied April 22nd, 2011
Re: Fibromyalgia or MS ?
DiamondBlossoms wrote:
I am 37 years old and was diagnosed with fibromyalgia about 11 years ago. My doctor at that time in another city thought I might have MS but I moved before getting in to see a neurologist and my doctor here didn't think it was necessary. Since that time I have been having more and more syptoms like bladder problems, severe pelvic pain that comes and goes, burning hands, episodes of hot spine, dizzy spells, electric shock like pain runing up my arms, tremors almost constantly, migraines all the time, extreme exhaustion yet inability to sleep and severe muscle spasms throughout my whole body. I have also just recently started to mix up my words and slurr my speach occassionally.

Since I have started having the electric shock like pain, my doctor is sending for a consult with a neuologist after my chronic pain physician suggested it.

I feel like a hypocondriac/nut job most days. I used to be a very active person and I am unable to do most things that I did before. I am just so sick of being sick and tired! I am wondering if all my symptoms are just related to the fibromyalgia, muscle tightness and spasms? Some of my symptoms sound like MS but is the chronic muscle & jaw pain?

Frustrated after 11 years of wondering!


Your story is so very familiar to many of us. MS is a difficult diagnosis to make. I also met others with similar symptoms who thought they suffered form MS, but it was the psychotropics they were taking, or ADRs to other meds.

See my previous post.
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replied April 30th, 2012
I'm 25 and currently waitin too see neurologist!! I don't think ppl understand the pain / symptoms unless u have it !!
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replied April 30th, 2012
I'm 25 and currently waitin too see neurologist!! I don't think ppl understand the pain / symptoms unless u have it !!
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replied May 23rd, 2012
Fibro/ms and seizures
I was told i had fibro 4 years ago, since having seizures an mri found leisions on the brain, MS they suspect, my worries are the seizures, only have occured every 5-6 weeks. Had experienced auras for 1.5 years before a full seizure. those were thought to be "panic attacks" not. I wished these dr.s would have really listed long ago. have 2 neurologist working with me now. anyone one with similier story would like to know i'm not the only one.
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replied August 25th, 2012
I've had a dx for 5 years, but symptoms for a longer time. MRI showed some inconclusive spots on the brain, but the neuro thinks they are sequelae from migraines.

Hope she was right, b/c I can deal with the fibro dx - MS? Not so much.

But, whatever it is, it's what we deal with every day. Hang in, DiamondBlossoms. Try different things to find what works for you, and keep an open mind. Focus on what you CAN do, rather than on the what you can not.

{gentle hugs}
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