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I'm ready to give up finding answers...

TE MarieTE MarieMember
Around and around and around I go. Doctor to doctor to chiropractor to acupuncturist to Internist, GI, C/R surgeon, nutritionist, foot doctors, rheumy and lately a neurologist.

I have UC with a j-pouch and chronic cuffitis which is somewhat under control. I have fibromyalgia that has been in one long flare since before my surgeries started 2 years ago, GERD, thyroid issuses, and major foot problems. My feet are numb and cold 24/7. I've received several diagnosises that turned out to be wrong.

2 Weeks ago i went to the neurologist. He spent a long time testing me with waking and other tests. I did the drunk driver test where the police officer has you put one foot in front of the other, I flunked and Hadn't anythn to drink. One was I closed my eyes and told him if I felt a pin or dull feeling. I flunked that one too.

He doubled the prescription the foot doctor had given me, told me to call in after I'd been on the medication for 2 weeks and come back to see him in 3 months. I called and reported just a slight improvement and the nurse called me this afternoon saying. The doctor says that the numbness in your feet is not reversible. Confused then why give me a medication, she said that medication helps with the *****ly feeling only. He tested me for an hour, why didn't he tell me it could not be helped while I was there. I had hope that I'd finally found help and was getting to the bottom of this 10 year problem. It has gone from a small problem to a large one over that time. Is it still going to get worse. He should have called me - damn coward.

So my quality of life just is getting smaller and smaller. I'm forever doomed with numb feet. I'm going to have to quit driving or get some kind of hand operated car. I barely feel the pedals with my feet. My husband says I shouldn't be driving and he tries to take me to every appointment that is further than 6 miles around our home. Those local ones have a snow speed limit and does not involve an interstate.

No one has even figured out what caused my numb feet. Will my hands go next?

I'm sorry this rant was more about my feet than my J-pouch. UC is what hit me first years ago and then along came fibromyalgia. The rheumy said fibro didn't cause the foot pain and the foot doctor said it was caused by the fibro and the neuro says it's not reversable.

My quality of life keeps sinking and I'm getting tired of treading water. Frowner
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Jan DollarJan DollarModerator, RN, retired
Numbeness is caused by nerve compression or damage. Fibromyalgia does not cause it. Why your neurologist did not relay the information to you directly, I have no idea. But, really, does it matter in the long run? Probably not. Still irksome, just the same.

I understand your worries about future limitations with this foot numbness. I ahve inermittent numbness and tingling in my arm from spinal stenosis. I have had to adjust my life around it. So, I get it.

So, once you find that the damage os reversible, you just have to adapt. Canyou drive barefoot or in stocking feet to maximize what you feel? Just a thougt.

Jan Smiler
TE MarieTE MarieMember
Thanks ladies. I wrote this at the "sleep center". Dr. Sleep thought I might not need to use a CPAP anymore because I've lost so much weight. I went in a few weeks ago for the test and quit breathing 27 times and hour and my oxygen went to 79%. I still need the machine. Last night I was there so they could adjust figure out the level the machine was set on. Sitting alone in the Sleep room I was feeling sorry for myself.

Everything I try does not help. Both of my feet feel the same and it's keeps getting worse. Thanks Jan for the barefoot idea. I need to get a different car, as mine is a stick shift.

What was the compression or damage that did this. #1 question at my next office call. I don't know why I'm going back and if he is condensending again I might go PTSD on him.

It is worse if my feet are raised Sharon. I have and adjustable bed and have had the higher.

I already hold onto the hand rails, including at home. When I get in the 105 degree hot tub they still are cold and numb for 10 minutes.

When I was writing the original post I was trying to say "p r i c k l y" and the sortware wouldn't change it. So they feel a bit better. It's not just numb and cold, I get cramps in them too.

Thanks again
skn69skn69Member
Chronic vitamin deficiencies?
Have your potassium levels been checked lately? You lost a lot of weight recently and that may play into this...Were they like this before the weight loss too? Better or worse since? One of the strange side effects that they have found here from lapband surgery (or sleeve surgery) is problems walking post weight loss. Apparently the hips adjust slowly to the weight gain by altering their positon in order to bear the weight evenly and because we don't all gain in the same spots your hips/legs must adjust to that too. A kinisitherapist (the study of the body and its movement/therapy) showed the effects on the skeleton during a show...once the people have lost the weight they have to be re-taught how to walk and need physio to realgin the position of their hips and to get the supporting muscles back to the right positon etc...any chance that this could be the culprit?
They didn't mention cold feet but maybe there is some sort of stenosis there that can be worked on or readjustment of the pelvic basin?
Just a thought
Sharon
TE MarieTE MarieMember
My blood work is great plus had heavy medals here and blood work at Mayo's too. I have copies of my blood blood work from there and the most recent from here, a month ago. I haven't lost any weight since February, I've gained 5 lbs back, I use to be at 70 lost. I eat a banana a day, plus use coconut water in my smoothie's.

I go to the Chiropractor every 3 weeks and get a massage every other week. I was going to acupuncture for a while for my feet and I'm going to start that over again.

I can not stand, balance myself, on one leg and didn't know this until the doctor had me do those things. I can't stand on my tippy toes, I don't need to do that anyway Smiler My feet have been hurting since before our daughter's 2003 wedding.

I'll look up your suggestions Sharon. Cool
Jan DollarJan DollarModerator, RN, retired
You may want a referral to a cardiovascular doctor. The lower extremity symptoms are sounding more related to circulatory issues. The fact that elevating changes it and feeling cold points to that. But, still could be purely neurological.

However, circulatory problems can have a variety of causes, from occlusive disease, clotting disorders, peripheral neuropathies, hormonal influences, etc. Poor circulation can lead to numbness and tingling. You could also have peripheral neuropathy from medications, diabetes, or even idiopathic (no known reason).

I imagine you've had Doppler studies and nerve conduction/EMG studies done? Have they ruled out MS and ALS?

Jan Smiler
TE MarieTE MarieMember
I have not had a doppler, have had several electrical, don't have diabetes or never have been boarder line diabetic. I had a CTScan of my head. Wouldn't MS be detectable from it? MS causes lesions in the brain right? I don't know how they est for ALS but I'd be having the longest case ever, ha ha.

They did an MRI on one of my feet, that's what disapproved my podiatrists neuroma diagnosis.

I've wondered about Parkinsons and my hands and sometimes my body shakes. I didn't realize my entire body but my Chiropractor's mentioned it several times. She's an Atlas Chiro, it's a specialty they go to school for after they graduate. She adjusts my Atlas using precise measurements with a stylus behind my ear. It's just 6 pounds of pressure but it works. She also adjusts after that with an activator. She's done better than any my other Chiros. She gets rid of my headaches that last for weeks.

I don't have a clotting disease and hopefully we'e discovered all of my heath problems. I have a lot of spider veins in my feet plus had some big veins removed from the back knee 30 years ago.

Thanks Jan Smiler

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