Each year I seem to get better a bit and it's always in the summer so I wondered if anyone else does either? I still do not have a confirmed diagnosis of CIDP so I have not had any treatments although I was diagnosed with CIDP with a really bad nerve study last November. Then there was a problem with that doctor so I am still in limbo.
But each year that I have had all these neurological problems below my waist, I get better in the summer. I can say though that the time periods are much shorter each year and this time the pain hasn't gotten any better.
My only thought is that my body may still be able to regenerate nerves during this time period. Last year when I started to go back down it was very quick and no matter how hard I tried for it not to happen I still ended up pretty much house bound. My neurologist has agree'd that this may be just some regeneration, but I still can't seem to get any treatment.
What is new is I have regained bladder control, more balance (I still though can take a fall easily), and the severe cramping has stopped for now.
So does this happen to anyone else? I'm sure most everyone else on here is on some type of treatment so I"m sure this would not be happening to them. I still though have not found anything to help my pain but just some of these improvements have helped me mentally and that for now makes the pain a bit more bearable. I need to keep this short so I am just curious if anyone else has improvements when the weather gets warmer. It's certainly no cure but getting some functions back to me is a blessing even if its a short period of time.
You say you "get better" every summer but it does not sound like you are really feeling completely well at all! Why are you seeing a neurologist and not getting any "treatments" for the condition? Are you on any meds at all? If you are having bladder issues and muscle cramping, I'm guessing your symptoms are pretty debilitating and distressing when they are at their worst. Just having you ride the tide and wait out the change of seasons is not a good therapeutic plan.
I personally do not see a great different in the cold/hot weather differences in my condition. Last summer during the hottest time here in Central NJ, USA, I had my worst periods of severe muscle cramping and difficulty walking and with balancing and falls. Then I started IVIG treatments in November and throughout the winter months my condition improved. Now that we're heating up again, I just had a bad episode of back and calf muscle spasms that came out of nowhere and lasted several days off and on where I had to pull out the muscle relaxers and alternating ice/heat packs and muscle cream. Thank goodness after a few days of this therapy, the spasms stopped. My doc had added oral prednisone 50mg daily to my meds and I'm not sure if that's what kicked up the spasms. This whole thing is a guessing game. Today I finished my 2nd day of two days of IVIG with IV steroids and a liter of fluids and it's humid tonight and I feel like I'm blown up like a whale. My whole body feels tight like the "stocking/glove" feeling in my calves and abdomen. No pain though, just the tightness--maybe since there's no pain and cramping this is "improvement?" Very complex disorder.
I ask my neurologist if there is a difference between summer and winter in regards to conductivity of the nerves. She said summer is usually more difficult because of the warm weather.
I have a hard time in the cold because of reduced circulation in legs/feet and hands. Must wear excellent gloves and have not been successful in fitting boots over my leg braces other than walmart ugg type boots (real uggs too narrow). The pain from the cold is intolerable and therefore I tend to reduce my outings....which in turn reduces activity...exercise...strength..so ya I get better in the warmer weather.
Ask your doctor to check your Vitamin D levels. Low D can be helped with sunshine, and there are several scientists/physicians who feel that Vitamin D plays a significant role in immune status.
I have asked several leading MDs who work on CIDP if there is any variation in prevalence or severity based on geography (which is true for some diseases) and they have said it hasn’t been observed or published, so unlikely.
I get a lot of swelling and pain in the summer and a lot of pain in the winter. There is just a brief period in the spring and fall when it is bearable. Not to mention the loss of sensation, balance, and motor function which is always lots of fun.
Thanks for the responses. I can't tell you why I am not in any treatment yet. I am on several medications but none for CIDP. I just switched from Gaberpentin to Lyrica but its a very low dosage. I can tell you I have been on one of the strongest pain medications the fentanyl patch and it gave me no relief from pain at all.
In past discussions I have told that I also have a cervical neck injury and that has for some reason cause me to have very high reflexes. I see a vascular neurologist and he sends me to other neurologists for the diagnosis and as I said I was diagnosed with CIDP but that doctor got into some kind of trouble so they through the diagnosis out although the nerve study still stood. As I said I'll get a little better and when I did they did another nerve study and it was better at the time but still showing problems especially with my perennial nerve in my legs. Also I was told I had sensory and motor neuropathy.
So my current neurologist tells me my cervical neck injury is making the diagnosis hard and he has argued and told the other doctors that I only have the high reflexes due to the cervical neck injury and that is not going to change. He also went back and told them that he believes I have had some regeneration but until they give me the diagnosis of CIDP I can't get any treatment. I am a bit confused on why he can't give me the treatment using the nerve study when I was completely down.
The cold winters make my whole body freeze up and get stiff and this could also be contributed some to the cervical injury but it doesn't explain the bladder control problems. It also doesn't explain why they can't control the pain either. I got off the fentanyl patch because it just didn't work and I can tell anyone from experience if you don't have to go on that medication do not do it. The withdrawals are horrible even slowly going off of it. I still take a regiment of hydrocodone and muscle relaxers but they don't help along with medications to make me sleep at night.
There are many people that end up going for years until they get treatment and I might just have to be one of those people. I have made some great friends and read and study a lot so I hope as things get gradually worse (and my condition always does after feeling better for a month or two), I am more mentally equipped to handle the downs. I know moving is the most important thing you have to do. My problem is that I try my hardest to keep moving but it seems to get impossible once I start that downward turn.
My neurologist could go ahead and put me on the prednisone treatment but he has told me he will not do that because of the side effects. So I just try to remain positive, feel blessed during the good times, and know there is hope.
He has checked that. I've only had vitamin b12 problems which I take supplements for and I am trying to get out in the sun a bit more. Thanks for adding that though!
David V said:
Ask your doctor to check your Vitamin D levels. Low D can be helped with sunshine, and there are several scientists/physicians who feel that Vitamin D plays a significant role in immune status.
I have asked several leading MDs who work on CIDP if there is any variation in prevalence or severity based on geography (which is true for some diseases) and they have said it hasn't been observed or published, so unlikely.
Thanks for the responses. I can't tell you why I am not in any treatment yet. I am on several medications but none for CIDP. I just switched from Gaberpentin to Lyrica but its a very low dosage. I can tell you I have been on one of the strongest pain medications the fentanyl patch and it gave me no relief from pain at all.
In past discussions I have told that I also have a cervical neck injury and that has for some reason cause me to have very high reflexes. I see a vascular neurologist and he sends me to other neurologists for the diagnosis and as I said I was diagnosed with CIDP but that doctor got into some kind of trouble so they through the diagnosis out although the nerve study still stood. As I said I'll get a little better and when I did they did another nerve study and it was better at the time but still showing problems especially with my perennial nerve in my legs. Also I was told I had sensory and motor neuropathy.
So my current neurologist tells me my cervical neck injury is making the diagnosis hard and he has argued and told the other doctors that I only have the high reflexes due to the cervical neck injury and that is not going to change. He also went back and told them that he believes I have had some regeneration but until they give me the diagnosis of CIDP I can't get any treatment. I am a bit confused on why he can't give me the treatment using the nerve study when I was completely down.
The cold winters make my whole body freeze up and get stiff and this could also be contributed some to the cervical injury but it doesn't explain the bladder control problems. It also doesn't explain why they can't control the pain either. I got off the fentanyl patch because it just didn't work and I can tell anyone from experience if you don't have to go on that medication do not do it. The withdrawals are horrible even slowly going off of it. I still take a regiment of hydrocodone and muscle relaxers but they don't help along with medications to make me sleep at night.
There are many people that end up going for years until they get treatment and I might just have to be one of those people. I have made some great friends and read and study a lot so I hope as things get gradually worse (and my condition always does after feeling better for a month or two), I am more mentally equipped to handle the downs. I know moving is the most important thing you have to do. My problem is that I try my hardest to keep moving but it seems to get impossible once I start that downward turn.
My neurologist could go ahead and put me on the prednisone treatment but he has told me he will not do that because of the side effects. So I just try to remain positive, feel blessed during the good times, and know there is hope.
I truly believe for me this is correct. I believe I may have had CIDP longer than I have known as summer I have had longer periods of being well and always thought all my problems were due to my spinal cord injury. I do get around with crutches. It wasn't until about 2 years ago that I started having problems with my lower extremities and then the periods I was getting better in the summer started becoming shorter. So I'm thinking the nerves are not working as well for a longer period anymore and could be because of more progression of the disease.
Robert Martin said:
I ask my neurologist if there is a difference between summer and winter in regards to conductivity of the nerves. She said summer is usually more difficult because of the warm weather.
I don't think I have lupus because I have no problems in the sun. I just wish someone could figure out what is going on. In the winter I couldn't use a heating pad only ice and now the heat feels good but also cool water at times feels good too. From last April up until this April 14 test were ran to seeing neurosurgeons to make sure I didn't have any lower back problems. Blood tests etc. and the only thing that came back extremely bad was the one nerve study. Then it got better in April.
I have argued so much for treatment I have given up for now. My neurologist went from private practice back into a teaching university which I think is good because he has a number of other doctors he can consult with. But they still haven't made up their minds on any course of action and the last I heard from him in may he said IVIG was still not out of the question. So I decided to quit bugging him for now and just wait until my next appointment. I have tried other neurologist but have not had much success so I have just decided to stay with the one that has known my condition for so long.