Hello everyone!

After reading through the different posts in PN for the past few weeks, it seems like there are many who suffer from nerve pain only. My symptoms with CIDP are predominantly weakness in my upper arms, neck and legs. It is strange too because the weakness in my left arm is greater than in my right arm and my weakness in my right leg is greater than in my left leg.

My biggest challenge is walking! It's exhausting! Just to get around the block takes me so long. I am someone who was in good shape and walked everywhere.

Is there anyone else suffering from the same problems with weakness? I would love to hear other stories about how you cope with this. Any good exercises, vitamins, diets???

Thanks!

Yes!

Please do read the information at my website. It is not commercial and it will provide you with important basics regarding B12.

If my severe malabsorption had not been ignored for such a long time, I could have kept dancing, working on my house, walking, etc.

rose

Thank you Rose! I'm going to check it out right now.

Hi. My muscles are so weak. I don't know if its from the pain or being in bed basically for 3 months. I'm sure a combo. I used to be a runner and could run 40 plus miles a week. Now I have a hard time walking through a grocery store. I have no answers but there people seem very knowledgable and your not alone. Also I had a bad experience with physical therapy but I know many it builds strength for. Have you thought of that?

Hi Daniella - I go to PT twice a week for an hour each visit, but I really don't think the therapists there know how to help someone with a neuropathy. They just leave you on the stationary bike, or tread mill and let you circuit train on your own. I also try to get out for walks as often as possible even though I don't enjoy it anymore.

One thing I have noticed is that the weeks that I get out more, I am stronger. If I skip a PT session, or I don't go out walking for a couple of days, my legs do feel weaker. So the exercise is very important.

I had severe muscle weakness....but mine came in mini steps.
It all began 4+ years ago right after I'd finished a second infusion of Remicade for Crohns disease.
Then shortly after that I had a double bowel resection, my rotted intestines AND an AVM, anuerism like mass that caused severe anemia.
They wondered if I'd caught something from all the blood transfusnions, lost count after 25 I'd received during a 2 year period of time.
But after the surgery...I got much worse with muscle weakness....so bad that I was then totally bedridden! Needed full time care just for basic grooming. I could only sit in the corner shower seat while others soaped me down....then crawel back into bed to have others dry me off.
I needed a walker just to get to the toilet...but wore Depends most of time, I was THAT ill! That was the summer from H3LL!
After the bowel resection my muscle weakness just increased. I had every diagnosis imaginable...from NutCase,Polymyositis,Meneirs, MS to possible ALS....even sent to ALS center here on Pill Hill...what a nightmare that was!
I wanted to die....even to the point I made an attempt...too fatigued to pull the trigger! ...I gave up, went back to bed!
With increasing weakness, other symptoms began appearing such as burning lips and total loss of my balance. I had to hang onto walls just to keep from falling my balance was that off. I drueled mostly too fatigued to swallow! Then the burning began in my hands and feet....EMG and NC test showed classic sock glove pattern moderate levels of PN....was scheduled for more muscle studies and muscle biopsies....I was too fatigued to even allow anyone to drag me to those appointments....I'd cry and cancel all of this!
No one can even begin to understand this kind of fatigue!
And I was sick of the dimissive roll eye's received by Neuro's when I'd ask if my burning lips could be some sort of vit or min def....well duh people!
Didn't they know that anyone with long standing bouts of D-rea causes mal absorbtion! And 2+ years of deadly low anemia played a part in this as well, and Remicade AND surgery strips your body of vitamins and minerals!
No S Sherlock! But the PN burn, fatigue and now spinal cord pain whenever I put my chin to chest....felt like shock wave and burn down my spine...doc said...well...just dont do this! Well duh! Too many stupid "Sherlocks" each pointing in other directions.
One day my DH gave me a laptop...at least I could muddle thru a few web sites searching the cause of PN as I'm non diabetic....I wanted to know "WHY"!....then I found a web site where Rose talked about Methyl B12, simple vitamin deficiancy may be the cause of what was going on with me.
Could it be? So glad I took her advice...within 10 days I miraculously got out of bed and did a load of laundery when my care giver came over! OMG! After half a year of 100% bedridden and taking just a few tablets under my tongue, OK...it was more than just a few! It can't hurt you...so I was eating them like candy after my husband had purchased a few bottles for me that Labor Day weekend.
I hug Rose every day of my new life! That's what was wrong! B12 deficiancy, big time even thou was told it was normal level...232 is normal level? Yeah doc....and wearing a white coat makes you smart! NOT!
My walker sits in the garage collecting cobwebs now and although I'm not totally cured/well....at least I'm on the road to wellness and no longer suffering horrible fatigue, and PN is almost 90% gone....EMG back to normal!
Could it be?......YOU BET! I have zero doubts! Not one single shred!
Blessings, cheryl

Cheryl - That is an amazing story. I am so glad you shared it with me. It must feel so unbelievable to be back on your feet again! That's great!

I have been reading a lot about B 12 and I also just visited Rose's website. I didn't consider taking B12, because my first neurologist told me my level was normal. It seems like the doctors are only concerned with what medication they can prescribe and the rest is up to you to figure out.

Hi again Amanda,

Well Weakness eh!

Unfortunately, weakness is something that goes with the territory with CIDP.
Eventually you'll be able to judge for yourself when your weakness is getting to a point of scary.
The IVIG is hopefully also going to help a little with your weakness.

Just keep in mind that we NEED to work to keep our muscles sufficiently strong, because, take it from me, Atrophy is NOT nice. It will impede you getting to know this condition by throwing up all of these separate muscles aches and issues.

As for the weakness, try to listen to your body and not give yourself any guilt trips, because this or that didn't get done. I know it's difficult with a bub ( my bub is 12 and knows EVERYTHING apparently!) but you are the best judge of you.
Try not to overdo the exercise or your body will begin to let you know, with an almighty slump.

Check the stickies for some neuropathy sites and print out a range of exercises to show your PT and work together.

Personally I favour hydrotherapy. But then again, I am a water baby!


all the best

Have a lovely day


Noong

Your so right about the docs and the prescription meds. My b12 are high I think he said. I was taking just a b complex but maybe I thought he said high b12 and it was another b. In any regards I too hear good about b12 and I think I'm going to just find a b12 since no fear of too much why my neuro said to lay off for a week I have no idea. Is it good to start on b3 in a small amount?I'm glad pt is good for you. I went once and could barely move for weeks. Could you maybe see another pt? I know mine did stretches and massages on the muscles. I can't imagine even attempting exercise as the pain is so great just laying and doing random errands. I don't even wear a shoe on one foot though trying but it flares up my foot/ankle/calf. I also heard at home stretches can help but I would maybe ask.

You will find detailed information about many nutrients on the vitamin forum here.

rose