Fibromyalgia Community
Fibro to MS
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Fibro to MS

Hi,
I was dx with FMS about 8 yrs ago, also I suffer depression, facet deg arthritis and chronic migraines. Also, I am disabled and have not been able to work for over 2yrs. My pain is widespread, neck, and lower back, but as of the last few weeks I have noticed that my hands fall asleep whenever I stay in one position for more than a min. Also my legs do the same. In the past I have had leg pain and numbness but attributed it to a pinched nerve. However, within the last year my fatigue levels are off the charts and my strange new problems have me concerned that I might have MS. Concentration is bad eyes are weird, loss focus in os, left eye all the time.
I hate tp think it, but this tingling and buzzing throughout my body really scares me. Along with that I also feel like I now have piched nerves all over.
I can't continue to live this way, fms pain is bad enough. But does it sound like it could also be MS?
Thanks ahead of time for any expert info.
Wolfey
Tags: ms
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Avatar_m_tn
Hi wolfey, I'm not a doctor but what you're describing could be MS or it could be something else. I would gather all your medical records and see a neurologist. Plus, oftentimes the diagnosis of FMS turns out down the line to be something else. I'd appreciate if you could tell us some more about your symptoms, like how old you are, when your symptoms started, anything you've been diagnosed with and what kind of testing you've had. When your symptoms are disabling, which in your case it sounds like they are, it's very important to make sure you've ruled out a whole bunch of other stuff that's treatable.
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Avatar_f_tn

Hi, thanks for responding. I am 42, and married, had a hysterectomy 2 yts ago for Adenomyosis, ovaries still intact.  Was dx with fms by a rhuematoligist 8yrs ago. At the time tested me for RA, cancer screenings and only had xrays done on back. Fm was severe with IBS weakness and lower back pain that was so disabling that I could only stand up to 30 min and sitting for a few hours. Over time I lost my insurance, but my rhuemy still saw me at a discounted rate. We have tried a multitude of meds, most of which I could not handle the side effects.  Eventually, depression, anxiety and worsening of pain with weakness and migraines caused me to stop working.  Most meds that I took made me dizzy and foggy. Lyrica, gabapatin, topamax. About 18 mos ago my fatigue was at its worst, I would lay down all day, when I was up, for more than 1/2hr I would get severe vertigo, and feel faint. This happened everytime I went to a store or walked around for more than 20 or 30 min. I was also at my thinnest, about 15O pounds, which is skinny to me, currently 175. Eventually I also started having chest pain. I went on xanex for anxiety, clonazapin at night for night terrors, and have been taking vicoden daily 1 or 2 doses for pain.
  I have had shaky hands forever.  And just in the last 6 mos or less, my neck shoulders felt like they have been tied up, stiffness, neck pain muscle spasms. The numbness seemed to come after that, in the last month I have really noticed it.
I have seen a neurologist, but it was in regard to my migraines, he mever checked me out for other things.
I am so ashamed of my illnesses, it sounds crazy but I have always minimized my pain to Drs.
What is this. I am exhausted, and the numbness is driving me nuts.  I feel like a bunch of pinched nerves I alos to flexiril which does help with the upper back pain@ and I have noticed that my pain and exhaustion is the worst in the afternoon. I go to bed at 3pm everyday, fall asleep at 11, and up by 8. Where I try to do minimal things around the house. But nothing too hard.
Thanks for listening. I am just worried...
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Avatar_m_tn
Ok Wolfey, I have a couple of things to say that I think may be helpful. First, it’s important to know about the disease you’ve been diagnosed with. According to the American College of Rheumatology, there are specific criteria for determining if someone has fibromyalgia. One of the criteria is “The patient does not have a disorder that would otherwise explain the pain.” (1) This means that before someone should receive a diagnosis of fibromyalgia, other diseases must be excluded. These are several and include things like vitamin D deficiency, sleep apnea, lyme disease, joint hypermobility, thyroid problems, arthritis, multiple sclerosis and others. The point is that they need to be excluded. In addition to your pain, you have muscle spasms, changes in vision, and vertigo. They can all in theory occur in fibromyalgia, but really I think you need more testing.

The most important thing to consider is that you’re only 42 and you’re disabled and you’re getting worse. And the diagnosis you have is one that is extremely vague, poorly understood and has no test for. Plus you have not responded to the standard treatment for fibromyalgia. So you have to do something, and because of the nature of your disease and your symptoms, you have to help yourself the best you can. First off, do not be ashamed of your illness. You’re sick. Don’t confuse depression with grief. Anyone who is starting middle age and unable to do the things they want to do should be sad.  You need to see a doctor. I think either a pain specialist or a neurologist. And don’t feel like they’re judging you. If you see a doctor who tells you that your symptoms are all in your head than that doctor is an idiot and go see someone else.

I think The most helpful thing you can do for yourself now is to document your symptoms. Even for just one week, just keep a diary of your symptoms. Each page keep track of one day, so you can go back and add stuff if you forget or it’s most convenient. Stuff like how you felt, what your pain was, how your sleep was, and any other symptoms or relevant information. Be as specific as you can. This is harder than it sounds because it’s amazing much we can trivialize our symptoms or rationalize our behavior despite it being clearly a sign of something wrong. One thing I think it would be helpful to keep an eye out for is if you feel extremely tired when you first stand up in the morning like you must lay back down and see if that feeling eventually goes away if you keep on standing. When you go to the doctor, bring all your records and as much of your logs as you feel comfortable with. But the more you tell the doctor the better chance he or she has of being helpful.

Then there are the general good life habits that can help everyone. Eat as healthy and as natural as you can afford. If you drink diet soda then don’t drink it anymore, drink regular soda or iced tea or juice is you want something sweet. Take a walk outside if you can. Do something new.

I hope this helps. Don’t be satisfied with your current situation. This is the rest of your life you’re talking about. Even if you don’t get a different diagnosis there are other medicine options like provigil an adderall (adderrall) that may give people with fibromyalgia more energy and a better quality of life. Good luck and let us know how things turn out.

Frank

(1) http://www.rheumatology.org/practice/clinical/classification/fibromyalgia/2010_Preliminary_Diagnostic_Criteria.pdf
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Avatar_f_tn
Thank you

I will do just what you suggested.it makes very good sense. Let's hope I just that ib have. A bunch of pinched nerves and all of this can be explained.I am worried in that my numbness is back and im exhausted in the morning. Appreciate your help, hope to get this taken care of soon

Am
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