I know I have posted on this before, but I don't think I really ever studied it. Just knew what it was. Mostly for me I'm sensitive to touch and the areas are actually sore to the touch and get sore from mostly sitting or laying when things hit the areas around my thighs, hips and lower back.
In studying more the causes are from CIDP, Aids, and vitamin deficiencies. But I don't seem to have any of the diseases that I know so far. I don't know about most of you but at one point one neurologist made me do the HIV 1, HIV 2 and all the hepatitis and I knew it would come back normal. The reason my neurologist doesn't think I have CIDP is after the fist diagnosis I did have a really bad nerve conduction study. But that doctor ended up diagnosing many people with CIDP and was fired. So another nerve study was done and it was a little better, then another each with different results. I think the last one showed one of the muscles that supports right under the knee was not working right and thats what was giving me problems walking.
I think sometimes doctors just don't know and my neurologist will at least try to offer explanations and say sometimes we just don't know. I have a cervical spinal cord injury and he thinks that is what is mostly effecting me because from that point of that injury it can effect the body all the way down. I could continue to keep doing tests but I got so tired of them I asked to stop.
Today I do my best to keep moving and I think moving keeps me from getting so stiff to the point I can't get out of bed and that has happened as well as there were times I woke up completely paralyzed and in such pain like my whole body was in muscle spasms and I couldn't move. It could be I had GBS at one time and it just wasn't caught. But this problem of sitting with this type of neuropathy continues to plague me. I have bought special cushions to sit on while I drive but their not small enough to say put in a back pack. I wish I had something to sit in a doctors office. I think doctors office have the worst comfortable seating. Just my opinion.
I don't know if any of you go through this but mine is to a specific area and thats my buttocks, hips, thighs and sometimes into my groin. Of course I do have neck pain and back pain but I've had that since the surgery that caused my cervical injury.
I just like to check back now and then and see if anyone new members or old ones have come upon this.
Cheers to everyone that pushes on daily as we all have pain. Mine is chronic but I really try and I don't talk about it much. I think the majority of people really don't want to hear about it and I think at times it just makes you feel worse.
Each day is a challenge to minimize triggers. That irritate and are painful. I don’t like you be touched or handled it hurts. A simple hand shake can cause burning and the pins and needles sensations to increase. I know people don’t understand and I would never be able to make them. The effort takes more energy than it is worth. I try to balance my meds with what the day brings but that can be a challenge.
People don’t understand nor do they really want to and that’s ok as long as they don’t impose. I don’t want to hold someone’s kid or take a hike . Well I would if it didn’t hurt but I keep to myself primarily and those that understand.
It makes me an ass in most people’s eyes I guess but that is not by my choice I just don’t want to whine.
Thanks for replying Robert. Not many people seem to know about the peripheral sensory neuropathy. I just had a visit with my neurologist and was tested for lyme disease also. He doubt that this is the problem but thought he would rule it out. Just as he can't be sure it isn't CIDP although he doesn't believe it is, he also said so many neuropathy's they just don't know why. They don't study neuropathy enough to aways know the cause. Along with CIDP you can get a false indication and so he is treating the symptoms and tells me the best thing is to try to keep moving the best I can.
I so agree with you that with you on the subjects of keeping to yourself, but I am trying to be a little more social. I don't have the problems in my hands so that makes it a little more easier for me. Mine is mostly trying to sit and stand. I have kept to myself so long for years that I can't hardly stand it anymore. I don't say anything about the pain because there just isn't any use in talking about it and unless a person has chronic pain then they will never understand. But, in trying to be more social i'm finding it extremely difficult because I can't go any place for a long period. Eating out at a restaurant is difficult because often the seating is uncomfortable. Trying to be social at a bar when you constantly are trying to look for a seat and then need to get up isn't working either.
I've thought about going to Church to just be around people but I haven't tried that yet. I'm wondering if I can sit through the service. I don't like being a recluse on the other hand either. I am single and alone but I do have 2 dogs that keep me company so that is a help in some ways but they don't actually talk to you. I wonder how you do grocery shopping etc? I use my crutches to go grocery shopping but it certainly amazes me that the Winn Dixie here has built their parking lot on a hill, so to try to push the cart up that hill and put the groceries in the car without the cart rolling into another car or back down into the store is quite difficult. Often they don't have anyone to load the groceries so I try to go at a time where I can get the lowest spot.
I have family here where I just moved, but I feel like a burden to continually ask them for help. Meals on Wheels here will not help me because I own a car. The food bank here got flooded last year and they can only give you 4 portions a year so I'm finding it extremely hard to live right now.
Robert Martin said:
Each day is a challenge to minimize triggers. That irritate and are painful. I don't like you be touched or handled it hurts. A simple hand shake can cause burning and the pins and needles sensations to increase. I know people don't understand and I would never be able to make them. The effort takes more energy than it is worth. I try to balance my meds with what the day brings but that can be a challenge.
People don't understand nor do they really want to and that's ok as long as they don't impose. I don't want to hold someone's kid or take a hike . Well I would if it didn't hurt but I keep to myself primarily and those that understand.
It makes me an ass in most people's eyes I guess but that is not by my choice I just don't want to whine.
Trying to move every single day is so beneficial to me in terms of maintaining my current abilities as well as reducing the spot pains from sitting or laying. Even if I sleep in the same position for too long I will wake up incredibly sore and stiff. It also reduces some of my cramping as long as I'm sure to hydrate. It's easier said than done when you're exhausted or in pain but it helps the body & mind in my opinion!
Have you thought of maybe attending a meeting for CIDP/or just chronically ill in your area? As beneficial as this online support group has been for me I can imagine meeting people who know what you're going through could help. I know of some resources if you are interested?
NEWONE said:
Thanks for replying Robert. Not many people seem to know about the peripheral sensory neuropathy. I just had a visit with my neurologist and was tested for lyme disease also. He doubt that this is the problem but thought he would rule it out. Just as he can't be sure it isn't CIDP although he doesn't believe it is, he also said so many neuropathy's they just don't know why. They don't study neuropathy enough to aways know the cause. Along with CIDP you can get a false indication and so he is treating the symptoms and tells me the best thing is to try to keep moving the best I can.
I so agree with you that with you on the subjects of keeping to yourself, but I am trying to be a little more social. I don't have the problems in my hands so that makes it a little more easier for me. Mine is mostly trying to sit and stand. I have kept to myself so long for years that I can't hardly stand it anymore. I don't say anything about the pain because there just isn't any use in talking about it and unless a person has chronic pain then they will never understand. But, in trying to be more social i'm finding it extremely difficult because I can't go any place for a long period. Eating out at a restaurant is difficult because often the seating is uncomfortable. Trying to be social at a bar when you constantly are trying to look for a seat and then need to get up isn't working either.
I've thought about going to Church to just be around people but I haven't tried that yet. I'm wondering if I can sit through the service. I don't like being a recluse on the other hand either. I am single and alone but I do have 2 dogs that keep me company so that is a help in some ways but they don't actually talk to you. I wonder how you do grocery shopping etc? I use my crutches to go grocery shopping but it certainly amazes me that the Winn Dixie here has built their parking lot on a hill, so to try to push the cart up that hill and put the groceries in the car without the cart rolling into another car or back down into the store is quite difficult. Often they don't have anyone to load the groceries so I try to go at a time where I can get the lowest spot.
I have family here where I just moved, but I feel like a burden to continually ask them for help. Meals on Wheels here will not help me because I own a car. The food bank here got flooded last year and they can only give you 4 portions a year so I'm finding it extremely hard to live right now.
Robert Martin said:
Each day is a challenge to minimize triggers. That irritate and are painful. I don't like you be touched or handled it hurts. A simple hand shake can cause burning and the pins and needles sensations to increase. I know people don't understand and I would never be able to make them. The effort takes more energy than it is worth. I try to balance my meds with what the day brings but that can be a challenge.
People don't understand nor do they really want to and that's ok as long as they don't impose. I don't want to hold someone's kid or take a hike . Well I would if it didn't hurt but I keep to myself primarily and those that understand.
It makes me an ass in most people's eyes I guess but that is not by my choice I just don't want to whine.
I have the same issue, with soft bumps causing much more pain than they should or, for example, I am itchy, and I scratch it and then the underlying tissue feels bruised for the next 15-30 minutes. I've also had trouble when laying in the sofa: my arms fall asleep and resting my arms on my chest causes discomfort, so I am constantly changing positioning of my arms.
What concerns me most is that I've had problems with my swallowing reflex: like the swallow gets stuck when it gets to the soft palate and I'm worried that this will become a more regular occurrence. I have an appointment with my neurologist on the 23rd, so hopefully I'll get some more answers then.
in terms of getting a proper diagnosis, I guess I'd advise you to not give up and get second opinions, or third if necessary. I had two crappy doctors tell me that it was all in my head and it took six years to get properly diagnosed (Polyneuropathy/Fibro).
The chronic issue really weighs on me and has affected my mood severely, but having something useful to do really helps, so keep busy and don't worry about other people. I also don't talk about these issues much, even with my partner, but when I do need to talk, he listens, so I'd say yeah... don't go talking about it with everyone, but if you have someone close to you who you trust, don't not talk to them about it. It helps, sometimes, to just talk to someone and let them know that you know they can't solve the problems, but that you need to not be alone in knowing what's happening to you.
As far as walking is concerned, I hear that: the polyneuropathy has progressed to the point where my nerves are very susceptible to damage and during knee surgery, they strapped my leg down and damaged my saphenus nerve, so I have no superficial sensation on the medial part of my leg from my mid-thigh to my ankle. I also get those awful shooting pains like hot burning needles and that knocks me out for a while.
You're not alone... and I hope you get some relief soon.
Hi everybody! My wife is the CIDP patient and I try to find support and resources where I can. I am a new member too so you all have been a real life line.
We found that B12 did offer some relief for the burning/stinging, but not as much as hoped for. Bobbi did find relief through an unexpected use of steroids for a respiratory infection. She said those two days were the best she had felt in years! But we all know that long term steroids can have bad side effects. We are now on the IVIG train for 5 monthly cycles.
Knowing that there are others out there who understand this diagnosis has been really helpful. We also found that a support group meets near us in Alabama and are going to attend a meeting in October. Always here to lend an ear or help in any way I can!