Pain and Weakness If Legs Aren't Elevated. Is This A Problem For Others Too?

I am new to this group, but have been having symptoms for almost three years. I am still waiting for a diagnosis and visit the neuropathy clinic the end of August. My symptoms following a relapsing/remitting pattern and I have been in a fast decline again since early May. Lately it isn't enough to be off my feet. I have a great deal of discomfort now when my legs aren't elevated. I am very limited to where I can go because I don't have a wheelchair of my own yet. I love to get out of the house and go to the grocery or major chain that supplies electric carts. Now my legs hurt after one of those outings too. When I am at home I have to prop up my feet or major pain occurs. Is this a problem for others?

Hi Susie,

Can u pls describe your symptoms in detail. I will try to provide as much as information for your problem

Cheers,

Kannan

I keep my legs elevated all the time. I do find when I go out, the pain is greater. Probably the pull of gravity. I limit my outings to 4 hours.

Probably it could be due to peripheral edema formation. You may need an expert foot & ankle specialists opinion for your problem to rule out Plantar Fasciitis too

tcwlkr said:

I keep my legs elevated all the time. I do find when I go out, the pain is greater. Probably the pull of gravity. I limit my outings to 4 hours.

In active edema, the retained water actually buffers some on the neuropathy pain. That holds true until the edema becomes so great as to cause venous stasis and eczema. Also called stasis dermatitis. On the other hand, it could be blood pooling in the legs, renervating pathways, generation of new muscles, new stub growth etc. Nerves grow slower than hair.

Lots of things to consider. Over years I have had similar. Sometimes simple stretching releases the lactic acid buildup after laying then walking. The Anodyne Therapy unit has been widely tested and is about to received FDA approval. Of course there is always Oxycodone when all else fails. Some can get by with Gabapentin or Lyrica. Others not. Many use steroids, prescribed and injected. Good luck.

I have found a shot of IM benadryl relives my pain more than anything. However NO doctor will prescribe me that for at home use as of yet. Narcotics yes. But a simple shot of benadryl that is not addictive calms the nerves for me; does not addle my brain; and I do not get the same from the pill formula. Go figure these doctors. They will give you morphine; dialuded; whatever, but when you tell them what works, they won't work w/you.

"we don't have any research that shows that works." Well it works for me.... Well, let me give you morphine. "It makes me itch. "How about percocet?" I'm allergic. Neurotin? "Didn't work. "

Hi Susie,

I guess we are all different and possibly I am fortunate that I do not have CIDP as badly as others. I seem to have had it for about4 years now and have been on IVIG for almost 12 months now. I continued to deteriorate for the first 6 months of the IVIG but I am fairly confident that I am in a holding state at the moment. I still have nightmares about rats , cats etc attacking my feet at night but to be honest I have never had the sort of pain other peoplle talk about . I have totally lost the dreadful dull nagging pain in my lower back that was driving me crazy. I have had arthritic pain for years and had knee replacements in 2003 and 2007.As a result of all that and a bypass I have been on Panadol Osteo for years .. 6 to 8 a day and I have only sparodic pain . I am 74 , love fishing gardening , boating etc and still enjoy a full rich life. My only comment to anyone with pain is to take the oainkillers prescribed and try to have as much activity as you can possibly endure.Just now I am really pleased with where I am at and I encourage others to think positive.There was a time ( not all that long ago ) when I refused to take any pill but I have found that the pain killers give me so much more freedom I have no hesitation in recommending them to my fellow sufferers. Kind Regards Ernie Harris.

Yes!! This happens to me, I have to keep my feet elevated throughout the day or they burn, ache and go more numb to the point I can't walk. I can go maybe an hour before I have to prop them up again. It interferes with driving--I can only drive about 15-20 minutes before they start to do the same thing. At work I keep a step stool at my desk and have to carry it with me throughout the day. For a while, I noticed my feet were "blanching" (as the doctor calls it) where they would turn red and white like blood was pooling in them. Of course I was told CIDP does not cause this, but I didn't have this until I got CIDP. The doctor still isn't sure why my feet do this. I ride the carts too and they help. I'm not sure if it is due to nerve pain or something else, but I do know that painkillers, prescription or over the counter do not work on nerve pain because it is a different method of action than regular pain, which is why they prescribe Neurontin, Lyrica etc. I also take a muscle relaxer because the muscles and tendons in my feet are contracting because I don't walk on them normally which also causes some pain. I've found that keeping them propped up, walking in short bursts and riding those carts are the best way to work around it...

I went to a new PCP today. I have told 5 doctors now that what helps me the most is IV or IM benadryl, 50 mg. They will not prescribe it. For some reason, it calms the nerves for ME. But because there is no research to support that it works for nerve pain, they won't prescribe it. Tablets don't ease the pain for me. They'll give me ALL the narcotics I want, but a non-addicting, non-classified drug, "NO!" I don't get it. I left the house before 10 to get labs; didn't get blood work til 10:50. New PCP appt. was @ 10:40. She didn't see me until almost noon. I left there at 1:15. When I got home at 1:45, I was exhausted. Took a morphine and have had my feet up and on ice. The IM (intra-muscular) benadryl would have eased the headache and pain and I could have actually worked. She said, "We're worried about sedation." It doesn't sedate me... What the hell do they think narcotics do?

This is such a little understood disease. But if a patient says, "This works for me." Why the hell won't they do it? Our lives are being disrupted at every angle and it's like, they don't listen.

I use Baclofen, a muscle relaxer, for pain. That works just okay. They also have me on Tomiramate (topamax) 100 mg. twice a day for the nerve pain. It's not proven to work for it but they prescribe it; why they won't the IM Benadryl escapes me Susie. I can literally get all the narcotics I want, but IM benadryl for pain, NO!! I don't get it. Give me percocet, "OK." That didn't work. "Give me demorol." Ok. "Give me dialuded" IM Benadryl works . . . NO!

This type of swelling in legs/feet/ankles is very common now with neuropathy sufferers. Many recent drug research states that Neurontin/Lyrica kind of drugs induce peripheral/lymph edema and am also one of the victims for these kind of drugs. To counterattack this problem Indian Doctors are now prescribing Trypsin/Chymptrypsin & L-Methyl Folate combination drug along with lyrica. I am getting better with this combination drug. Its branded as METANX in US and am not sure about it in other countries. Pls chk with your doctor before taking this drug. I find it very useful for peripheral edema swelling



clb75 said:

Yes!! This happens to me, I have to keep my feet elevated throughout the day or they burn, ache and go more numb to the point I can't walk. I can go maybe an hour before I have to prop them up again. It interferes with driving--I can only drive about 15-20 minutes before they start to do the same thing. At work I keep a step stool at my desk and have to carry it with me throughout the day. For a while, I noticed my feet were "blanching" (as the doctor calls it) where they would turn red and white like blood was pooling in them. Of course I was told CIDP does not cause this, but I didn't have this until I got CIDP. The doctor still isn't sure why my feet do this. I ride the carts too and they help. I'm not sure if it is due to nerve pain or something else, but I do know that painkillers, prescription or over the counter do not work on nerve pain because it is a different method of action than regular pain, which is why they prescribe Neurontin, Lyrica etc. I also take a muscle relaxer because the muscles and tendons in my feet are contracting because I don't walk on them normally which also causes some pain. I've found that keeping them propped up, walking in short bursts and riding those carts are the best way to work around it...

Yes, but strangely only in the right leg. I can walk for 10-15 minutes before I have this sharp pain going from my hip to my ankle, and if I try to go further to find a bench, forget it, I end up leaning against a wall for 5-10 minutes just to get some minor relief. I guess I still haven't learned, 4 blocks is 3 blocks too far. Gary