Fibromyalgia/CP, foot/toe problems

[SallyB]

I'm 51 and was diagnosed by a neurologist at age 46 as having Fibromyalgia and (possibly) C. Palsy. I always noticed that I had trouble sitting cross-legged on the floor, and got leg/toe cramps easier than my siblings. Even going into bath water or wading in a pool or lake causes my toes to cramp. I drink OJ and eat bananas for potassium so I assume the cramping is due to my CP. I have a hard time walking, as it feels like my toes and front half of feet (both feet-worse in right) go numb and won't accompany my feet! I try to walk often, though. Dr says "keep moving" and says my circulation is good. I avoid big stores like WalMart, Target, etc. as I can't walk that much-need their carts for mobility.
Do Birkenstock shoes help? I hear they have hard soles so am afraid my feet/toes will cramp, but some people have success. My legs get very tired walking also, and often feel heavy too. Neither can I sit for long periods as I get terribly stiff and much pain. I'm not overweight at all; actually fairly slim.
When my feet are warm I walk better. The Fib/CP affects my whole body and I get severe stiffness everywhere; hits my toes/feet the worst! I live in MN and the cold causes muscle spasms, but can't move to a warmer climate as my dr. suggests because of husband's job and can't afford to go south for winter financially.
I need ways to make my toes more flexible. I can't pick up marbles with my toes or scrunch a towel with my toes as exercises suggest-they only cramp up on me. Have always had stiff toes as had my dad.
Any idea to GENTLY get more flexibility in my toes/feet and also strengthen them, even gradually?
Thanks and God bless!

[SallyB]

I should also mention I have a very high arch and custom-made orthotics, but my feet have become so sensitive it's hard to wear orthotics which have any degree of 'hardness' to them.

[Admin]

Sally - you might want to have a read of this: Fibromyalgia and Heel Pain over at Podiatry Arena (a forum for health professionals only, but still worth reading)

[FootDoc]

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Fibromyalgia is a diagnosis most often made by default when no other reasonable diagnosis can be established for a chronically painful widespread musculo-skeletal condition. So that diagnosis in your case may or may not be accurate. I'm not a neurologist, nor do I play one on TV, but I would think that a diagnosis of CP, a condition where generally is caused by a mishap during birth, to be first diagnosed or suspected at age 46 has to be suspect. Frankly, I wouldn't consider the inability to pick up marbles or scrunch towels with one's toes much of a disability, and stiffness of joints has so many etiologies which are not associated with either fibromyalgia or CP that I think you just might be overlooking a much simpler diagnosis for a more exotic one. In general, passive and active exercises of joints are appropriate means to attempt to decrease stiffness and increase strength, but I am unconvinced that you are necessarily barking up the right tree. Surely you have been given some advice by your attending doctor(s). What have you tried and what were the result?

Thanks for your replies.
Basically I'm told to 'keep moving' and the doctor suggested tai chi or pilates to get more exercise. I also take Neurontin and Flexeril. I recently added glucosamine/condroitin at my dr's advice. Before I saw the neurologist the dr. told me "if anyone can figure out what's wrong with you, this guy can." However, many exams, MRIs, muscle and blood tests later the neurologist admitted he was stumped. He said my reflexes are not normal and they are too 'floppy' which lead to the diagnosis of CP. Also said I seem quite 'klutzy.' He told me he was sure at first I had either MS or Lou Gehrig's Disease. Somehow it all boiled down to CP and Fibromyalgia.

[FootDoc]

Sounds to me that your neurologist has a tendency to think "biggie" diagnoses. CP, MS and ALS as a first thought because of some "floppy" reflexes and klutziness seems to me a bit much. Doctors are taught to think horse, not zebras when hearing hoof-beats. Perhaps he missed that lecture.

Hello:

In 2001 I was diagnosed with fibromyalgia from a podatrists and was told by more primary care doctor that fibromyalgia does not go into your feet. This year I was diagnosed with mortan's neurona, plantar fascia, posterior tibila dysfunction, perherial neuropathy, and have been fitted with orthothics. I finally went to a neurlogists and was given the diagnoses of fibromyalgia. I was given a ten's unit. What a difference I can actually walk on my feet again, with less pain.

I was diagnosed in 1998 with fibromyalgia and I take nothing for my pain. I suggest you get on a schedule a regular schedule every day, no matter if you ache, and take two tub baths a day. What a difference.

Medicine may help with the pain, but the downside is they destroy your kidneys and liver.
I am working on avoiding this root for as long as I can.

Hope this helps!!

Originally Posted by FootDoc

...I think you just might be overlooking a much simpler diagnosis for a more exotic one.

Don't understand the comment. Would it be the dr who's overlooking a diagnosis? The patient is just repeating what they were told?

[FootDoc]

Having obtained a diagnosis of fibromyalgia and possible cerebral palsy 5 years ago from a neurologist who apparently has not been able to give her effective help, the questioner now comes to an Internet forum to ask those who have had no opportunity to confirm such a diagnosis what to do. Instead of going down the same path which has led her to this rather desperate move, based on the fact that her symptoms, as stated, are not exclusively indicative of either fibromyalgia or cerebral palsy, it might be well for her to consider seeking another diagnostic opinion which might wind up being far less exotic than the one given her, albeit with no help ensuing.

Does that clarify my post for you?