Why can't I find a diagnosis for my condition?

I've been treated for Fibromyalgia for the last 10 years with no significant improvement, apart from learning to push myself on & on when all you want to do is collapse in a little heap!! I was told it was not a progressive disorder & I could expect to get better. Initially it was just severe muscular pain, tremor & muscle spasm. Over the years I have developed Irritable bowel, Migraine, extreme fatigue, worsening of muscular pains & spasms gradually effecting all parts of my body when in the beginning it was just arms & shoulders.
Have suddenly had a decline in my condition thus raising questions as to the validity of the diagnosis in the first place.
Last year I developed difficulty in passing urine, this was investigated & they found I had a true stricture which was dilated. However 6 months ago I went into retention of urine & was catheterised for 3 weeks. I now have to self-catheterise when necessary. I am  also woken every night with severe excruciatingly painful muscle spasms, my joints seem literally locked. I find myself now unable to walk far at all & need crutches for a short walk or wheelchair for longer distances. I am in constant pain & great fatigue. I developed severe double vision & blurred vision. the ophthalmologist could find no physical reason for this & said he though it sounded like it was more likely a muscular or nerve problem. My GP is great & is doing his best to help me, but the neurologist I was referred to wasn't interested in the slightest, in fact he told me it sounded complicated & he only had 30 minutes to see me.!!
I am now at the end of my tether & feel I can't continue like this much longer. Can anyone help me?? Michelle

[Cindee56]

I can relate to all your problems.  I was also diagnosed with FM, but not getting better.  Have you ever had any MRI's to check for problems with spine, back and maybe make sure it's not MS?  That neurologist sounds like an idiot.  I would get another one.  I'm currently looking for new doctors myself because my insurance changed, and the other ones were not too good anyway.

I know how frustrating it is and it's depressing to be overwhelmed with health problems.

[Caroline565]

Hi Michelle,

I am wondering what type of treatment you have been receiving for the FMS? At best, we can learn to manage fibro and it's many symptoms and related syndromes as it never really goes "away" or gets better. One very important thing is we must learn how to pace ourselves with activity otherwise we can become fatigued which sometimes leads to injury. When the first signs of fatigue appear, take a break. Rest. When I overdo, I can just about count on not sleeping well and without that restorative sleep, my muscles hurt the next day and the fatigue becomes worse.

Are you taking anything to help improve your sleep? Deep sleep is critical for us because that is the time the body repairs tissue and muscle. Exercise can really help to manage pain, stiffness, depression and increase stamina. Stretching exercises are very useful in reducing pain--I have done them for years and also do them before and after exercise.

As far as your other problem, I'm not sure it's part of your fibro. We can have other problems unrelated, don't forget. It sounds  like it is really adding to your misery.

We do seem to accumulate alot of symptoms along the way, some come and go and some seem to stay. Flares are common, even if we feel we are in good control we can be hit with one for what seems to be no apparent reason. If you are under alot of stress, maybe you can see what you can do to eliminate some of that. I know I have seen my share of specialists too. Many of our symptoms need to be looked at because they can mimic other things. Some of these specialists seem a little high strung, like your neurologist. Sounds like he doesn't know much about fibro or doesn't believe it exists--used to be the rheumatologists were the specialists but now, they seem to be leaning towards the central nervous system.

I hope you begin to feel better soon. I know how depressing it can be when you have so much going on at once. All I can do is offer an ear, we all understand what you're going through, believe me.

[VaBreeze]

Yes, they do say that it isn't progressive...I don't follow that train of thought.  As we age and have additional insults to our bodies (mental or physical) it does seem to worsen.  That  has been my experience with FMS.

Have you been tested for MS and Lyme Disease?  If not, you may want to ask for these to rule them out.  If you look at our Heath Pages (Newly Diagnosed) it will show you some of the things that should be checked that can mimic FMS.

I have also been through several treatments without much relief...but some medications or alternative methods do work for many.  The best FMS approach must be multi-faceted; good sleep, exercise as tolerable, chiropractors, accupuncture, water aerobics...whatever works to help you feel better.  Also, boosting your immune system.

The stricture probably wasn't due to FMS, but the other symptoms you describe are familiar to us all.  We do understand how frustrating it can get and hope you will have brighter days ahead.  

Please keep in touch to let us know how you are doing.  Take care.

[Sickinthe_everywhere]

I am wondering if you have been tested for Lupus?