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nomad

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Mar 2, 2014
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Undiagnosed
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Country
UK
State
Greater London
I'm really struggling in trying to figure out my condition. I have chronic muscle tension, particularly around the torso, on the respiratory and neck muscles.

The muscle spasm in the diaphragm and intercoastal (rib) muscles have considerably restricted my breathing, which aggravates the anxiety.

I have facial cramps, really tense jaw.

There is an overall sense of muscle and body numbness combined with muscle tightness. My calve muscles spasm.

However, other then neck and parts of the spine I don't have much pain. Except when my nerves go crazy and start tingling, with that 'on fire sensations', where they feel wired. During those times i get extreme pain, but its short lived. A few days to a week at most.

I also have debilitating fatigue, and serious cognitive decline ie brain fog.

I can figure out which way to veer, Fibromyalgia, MS or ME.

My doctor is reluctunt to prescribe without a diagnosis, and I'm getting very frustrated.
 
What I'm really looking for from my doctor is muscle relaxants. Something along the lines of Pregabalin (Lyrica), Gabapentin (Neurontin) or
Flexeril (cyclobenzaprine
 
Hi Nomad, your symptoms are the same as mine. I first started with muscle cramps in my ribs then started getting them everywhere, even my tongue a few times, which was very scary as I could not breath. I also deal with exhaustion. Though I don't have as much pain as I have heard others describe, I do get nerve pain when I have a really bad flare. I use to get more of this when I was working. I had to quit my job even though I have no medical plan. Since I have quit working, things have been a little better but symptoms are not gone. I did some research on the web and found a few doctors that recommend taking a low dose of thyroid medication even if your thyroid levels come back in the normal range. My first doctor refused to prescribe me any and I don't think he really believes in fibromyalgia so I found a new doctor and he prescribed me synthroid at .05 mg. This has made a tremendous difference for me. I still get muscle cramps in my ribs sometimes but not anywhere near as often as I used to. I also noticed that I am not as stiff and sore in the mornings - the mornings use to be the worst but I am also not working so I can sleep in. Another thing is it seems to have helped my irritable bowel problem as well. My doctor wont give me muscle relaxants either, as he said they are only for short term relief and not safe for long time use. Hope this helps. Let me know how you are doing.
 
Forgot to mention that a rheumatologist diag. me with fibromyalgia. My sister has MS and I too sometimes wonder if that is actually what I have as some of her symptoms are the same as mine. My rheumatologist seemed pretty sure though that it is fibro and also arthritis and he said muscle cramps and muscle tightness is a very high symptom of fibro which surprised me because you don't often see that listed in a lot of sites.
 
I would strongly suggest that you see a neurologist and explain your muscle spasms and cramps to him. It is one thing to have these symptoms on a on and off time frame, but when it becomes a everyday thing then it is good to get a second opinion on the diagnosis. It is entirely possible to have two different health conditions at one time. There are other muscle diseases besides MS & fibro, that only a neurologist is trained to spot and diagnosis. If it is only fibro after being examined again then you will worry less and be able to learn to cope with the symptoms more effectivity.

Also take time to read around the forum to gather the many ideas and hints, and coping skills that other members have used or tried to use in managing their symptoms of fibro. Please ask any other questions that may have you concerned about your health and well being. Look forward to seeing you around the forum. :)
 
Thanks for the advice, I've just started seeing a neurologist, and he's still investigating. It does seem like it's fibro, but my only concern was the pain issue. My nerves though start burning at the slightest stimulus/stress, and this is the issue that I really need to bring under control. It's making work almost impossible, as I'm terrified of stress.

Thanks for the advice
 
Hi Nomad! I see you last replied to this thread a few weeks ago, is everything ok? What did the neurologist say? Did he order a CT scan? a MRI? I hope everything is ok with you, lately I've also been having weird pain and spasms! I'll be seeing a neurologist soon, I'm suspecting I'm being victim of an old infection that is acting up right now! Best of luck with everything, please don't forget to keep us posted :)
 
Hi Trellum,

I'm still waiting. I've now had my MRI scan, but not the results yet.

I'm also currently looking for a private thyroid specialist in the UK, as I strongly believe I have HYPERthyroid symptons, which is leading to, or exacerbating the fibro symptons. Any recommendations would be very helpful.

In the meantime I was forced out of desperation to order and trial meds from an online pharmacy. Mainly pain meds, and klonopin to calm the flares. I use them cautiously to avoid addiction and they have helped. I've also trialed bacolofen which has helped a little.
 
Hi there! So happy to hear you finally got a MRI done! I was supposed to get one today, but they called to let us know the machine wasn't working properly, buuu!

I hope it's all good with you and your results were positive. I see it's been a while since you replied :( Sorry, I hadn't seen this until now! Well, all I can advice you is to find the best doctor you can, I know isn't easy, but is the only way to go for us. I know a girl with hyperthyroidism and she lives a very normal life, she is taking meds and seeing a good doctor. So don't lose hope!

I truly hope to see your around here again, so you can let us know how it went!
 
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