Hi all. I have been living with CIDP since 2002. I didn't start treatment until 2007 when the tripping and falling got worse, walking became a chore and my hands and arms became too weak to perform my job as a massage therapist. I was put on disability and started ivig. I was unable to continue that treatment because I got meningitis. Celcept lasted about one month and then I was put on methotrexate which I have now been on for 6yrs. Much of my strength has gotten better but I am struggking with the cycle of taking the chemo twice a week, being down three days and then having only four days of semi functioning. My biggest symptom is fatigue. Iget exhausted from most exertion like walking or even cleaning my house. I had a period of 6 months once where I had great energy and felt like I was getting my life back but then I started backsliding. The past 3 months I've felt so frustrated, hopeless and depressed. I'm really trying to find acceptance and joy but the fight is breaking me. The thing I hate is not knowing exactly what is happening and if it's cidp related. Everytime I go to the neuro he says everything is stable and thats the extent of the matter. I guess I'm just venting but I wonder if anyone else has this issue of being able to function but with a level of fatigue that is crushing. Thanks for listening. Any input would be greatly appreciated.
Linda, thanks for telling of your experience. You've been fighting this a lot longer than me, but I can relate to the fatigue. However, I hope you find the strength of will to keep fighting it!
You said much of your strength has returned.Besides the fatigue, do you have any other active symptoms of the CIDP? Is the chemo drug causing the fatigue, and if it is, has your neuro considered taking you off it for a while to see what happens? Maybe the cure is what's knocking you down.
Thanks for responding. Yes we tried ivig first but I got septic menengitis. I have AFOs but try not to depend on them so that l don't lose muscle mass. I reread some older discussions on here to remind myself that I'm not alone and that it is true that fatigue playsa major part in the symptoms of this disorder. Somehow it makes me feel less like a failure. Thanks for your input. Be well. mdolich said:
Hi Linda, I just read your story here and I can relate to it. I first came down with GBS in 2003. I was put on IVIG and was able to get back up walking. After about a year and a half I started to have relapses and was re-diagnosed CIDP. I was put back on IVIG and have been on it ever since, every three weeks.
Fatigue is a BIG part of the disease!!! I get so fatigued some times, that I'll crash for 4 to 5 hours during the day. You say you've been on chemo, have they ever tried IVIG??
Also I have a bad problem with balance due to the CIDP. The VA hospital fitted me with AFO's for my lower legs and feet, they work great for balance. You might want to check into it.
Good Luck, ""Stay Strong and keep a Positive Attitude""
Hi I’ve been struggling with cidp for about 2 years now , it came on very slowly for me with tingles in hand and feet backache then slowly progressed to weakness and walking problems most noticeable walking up any incline, like many of you it’s been a very long and slow time with doctor s being pushed from one department to another with no diagnosis by which time I had lost nearly all movement in my body. It wasn’t until we went through a&e that thing moved on I had X-rays blood tests MRI EEG test confirmed there was a problem with nerve conduction and my body was attacking its self lumbar showed high protein as last they were getting somewhere.
I was then put on ivig treatment which has worked ok for me but gives me very bad symptoms the worst headaches very stiff neck nausea sickness. I am currently on a five day coarse of 600mg a day every five to six weeks sometimes only tolerating three days which is not enough really need five days. This week back on treatment ward for ivig as well as trying hydrocortisone injections fingers crossed. Like many of you weakness and fatigue is very hard to live with and I feel like I’m stuck in a five to six week cycle of treatment and its nasty side affects weakness fatigue then if lucky one to two weeks of feeling ok then wham back to hospital for ivig. I’m very lucky to have great support from my amazing partner and close family and friends which is very important.
Something I have learned is that we must all try to remain positive and enjoy the good days and deal with the bad days as there is always some one worse off than us out there.
Thank you for telling your story and reminding us to be grateful. I really pray you get through treatments with the most ease possible and have longer periods of reprieve. Thank you and be well. Ianf1968 said:
Hi I've been struggling with cidp for about 2 years now , it came on very slowly for me with tingles in hand and feet backache then slowly progressed to weakness and walking problems most noticeable walking up any incline, like many of you it's been a very long and slow time with doctor s being pushed from one department to another with no diagnosis by which time I had lost nearly all movement in my body. It wasn't until we went through a&e that thing moved on I had X-rays blood tests MRI EEG test confirmed there was a problem with nerve conduction and my body was attacking its self lumbar showed high protein as last they were getting somewhere. I was then put on ivig treatment which has worked ok for me but gives me very bad symptoms the worst headaches very stiff neck nausea sickness. I am currently on a five day coarse of 600mg a day every five to six weeks sometimes only tolerating three days which is not enough really need five days. This week back on treatment ward for ivig as well as trying hydrocortisone injections fingers crossed. Like many of you weakness and fatigue is very hard to live with and I feel like I'm stuck in a five to six week cycle of treatment and its nasty side affects weakness fatigue then if lucky one to two weeks of feeling ok then wham back to hospital for ivig. I'm very lucky to have great support from my amazing partner and close family and friends which is very important. Something I have learned is that we must all try to remain positive and enjoy the good days and deal with the bad days as there is always some one worse off than us out there.
The thing to remember here is that we are all the same only different. And you will have good days, and not so good days, and many days in the middle. Set small goals for each day. Today I'm going to ____________. And work toward that goal. Even if you don't achieve it completely, keep that goal and eventually finish it. You will feel better. And then set another goal for the next day. I went through months of hell in depression and anxiety and that held me back for way too long. I was lucky to make it from my bed out to my chair every day and lose myself in tv for the day. Height of my activity for months. Everything just hurt and I watched as my world crumbled at my feet, seemingly helpless to do anything to fight it. I rarely had any company, living in this house alone and that depressed me because in my mind no one cared. But at the same time, I didn't want anyone to see me like this either so I kept the blinds all closed and my doors locked and I sat in the dark. It was a dark lonely pit for a long time. I had a serious chat with my doctor, he could see my face red and raw from crying all the time, and he added Xanax to my meds and it's really helped me regain much of me again. I'm still dealing with not wanting to be seen by friends because I'm now on the prednisone and it's making my fatty areas shift to places they don't need to be and I'm embarrassed. My face is filling out and I can see the Moon shape happening and I've gained 35 pounds since I was taken off work. Much due to my inactivity, but also fighting the prednisone. I've since lost 10 of those 35 pounds being very strict with my calorie intake, but it's hard. Its still not coming off my face and my vanity is paying a hell of a price as a result. The upside to this though, is when I started the prednisone, my joint pain all over began to lessen. In fact, I didn't realize just how badly I hurt til it started to go away, and I saw the swelling in my feet and legs go down. That alone was enough to change my mood and make me want to get up and move. It felt good to do so. There are days that I am busting to get things done, and then I pay for it for a few and am less active but still make myself get up and go anyway. You pick your battles... and you choose your days. Let your good days carry you through the not so good ones, and understand that it's okay. It's going to happen. And when you get your next good day... suck it up like a sponge so it will carry you through til the next one.
Yesterday, I had to go grocery shopping, and I was in the store for a while. I leaned on the cart much, but I like to take my time and read labels. It was a toll though. By the time I got home, got all the groceries in the house and put away, I was totally spent. And then last night had to deal with my low back pain ( bulging disk issues) and also my upper back spasms that literally stop me in my tracks... Today... Not doing much of anything and taking it easy. Tomorrow will be another day and it will be better. Attitude is everything with us. What we deal with on a daily basis is only as strong as we allow it to be. And I've also learned to adapt over the years. There are things you love to do... you may not be able to do it in the same exact way you did before, but find another way to do it. You will reward yourself and feel so good about everything, it will keep you going. Find joys in each day. Something good about each day, even if its a bad one. There is something good in each day. It could be a phone call from a friend or family. It could be a blue bird on the feeder greeting you in the morning with a bird song. It could be a goal met. Anything. Find your happy place and keep it handy. Draw on it when you need to like a vitamin. And stay in touch in here too. I enjoy reading all the stories and connecting with people that share this condition... It's something we have... it does not define us, and it does not define you either. You are still who you are. Just find that which makes you shine again... You can do it. I know you can! ~ Blessed Be... Sis
Thank you so much for your time, energy and honesty Sis. Just hearing the similarities in our stories helps me see that I'm not alone and there is always hope. I l7ke the small goal reminder. I think I've been biting off more than I can chew and stomping my feet when I can't achieve what I want. (Well, figuratively stomping) Thanks again and continue to enjoy the warrior in you. ♡ L
Short reply - If you give up - then you have given up.
There is no easy way. On the positive side - my neuro says pain can't make it worse. For me that is about accepting that pain is now just a normal (sort of) part of life. Fatigue eventually gets you and then you need to slow down and have a reasonable rest. Note - I say "reasonable" rest. It would be all too easy to have a long rest - and then we are talking about giving in.
I could use a walking stick - but don't. I could sometimes used alternative transport (not feet mark 1) - but don't. I do give in on "unreasonable" - like elevator or ramp v stairs (that is my luxury). Oh! - and I do lean on shopping trolleys....!!
Thank you for your reply Michael. I am not giving up or giving in. If I did I wouldn't even bother to vent my feelings. I think part of staying determined is to work through the frustration. I too walk without my braces to keep my muscles working. I use a walking stick on rough terrain because thats just wise. I think we all fight this disease as well as we can and when we get tired, we reach out. Even if its in the form of expressing hopelessness. Thanks for participating in the discussion. This is what gets us all through. All good wishes.
I have been suffering many years with CIPD. I have been to 2 neuro drs 1 rheumotologist @ 2 internists. I'm now on full term disability from work. I was dx by a pain management dr. He told me there was nothing he could do and sent me on my way. Btw I didn't get dx until last 6/12. So i have been sitting at home just terribly miserable.The leg pain is sooo bad in my legs. My feet burn so bad that i use Ben-Gay cooling on them. I have twitches pretty much all over, and mostly in my legs.I'm depressed and frustrated!!!
I can only encourage you to get out and find something interesting that involves a bit of activity. It really does not matter what that is but it helps if there are supportive people around (not so much sympathetic, just understanding that you have limitations).
The pains won't go away but interesting activity will help you re-focus and do a load of good for those "useless" feelings.
For lots of people pain is telling them when to stop. For us CIDPers - it is just reminding us we are alive.... and to get on with living.
Melissa Kelley said:
I have been suffering many years with CIPD. I have been to 2 neuro drs 1 rheumotologist @ 2 internists. I'm now on full term disability from work. I was dx by a pain management dr. He told me there was nothing he could do and sent me on my way. Btw I didn't get dx until last 6/12. So i have been sitting at home just terribly miserable.The leg pain is sooo bad in my legs. My feet burn so bad that i use Ben-Gay cooling on them. I have twitches pretty much all over, and mostly in my legs.I'm depressed and frustrated!!!
Hi Linda, I know exactly how you feel when you talk about fatigue. I go to the library for three or four hours twice a week, then come home and crash for the next couple of days. My wife used to try and wake me up especially when there was a program coming on TV that I wanted to watch or didn't want to miss.She now states she gave up on this because she could never wake me,Oh, well. I guess that's life with CIDP. Gary
I work around the fatigue & pain. Tried 2 pain meds, Gabrapentin (sp) & Cymbalta, neither worked, don’t know what they will try next. What keeps me sane, is the last hobby I can still do from my wheel chair and with the associated muscle weakness, Digital Photography and doing my own post processing on the computer.
I really want to thank everyone for sharing. Since I wrote the first reply, I have used some of what each of you said and have been feeling a lot better. The biggest thing has been the advice to set one goal for the day and try to accomplish any or all of it. I am starting to ease up on myself by trying this simple way of approaching my days. And I've accomplished more than I expected. This really is a day at a time kind of disease so it only makes sense to break it down. It's hard to accept the limits we now have, especially when we were thriving active people. I still am but in a slower way. I hope to continue these kinds of discussions. Thanks.
Thanks to all of you. My CIDP is progresive and lately the fatigue is controlling my life. I’m a 57 yo male 6ft3. 295lb. Have worked all my life Since 14. And my employer let me go in April from my supervisory position. So being at home full time (not going to work) and not having the energy to do “anything” takes its toll. My day starts I get up make coffee for my bride(of 20yrs)let the dogs out – I try to cut the grass one day a week. Self propelled mower and a very small yard,if I accomplish that I’m done for the week-- if its hot outside–forget it! There’s nothing I can do for any length of time. Even go out to get the mail is a joke—
Sorry to ramble but I forgot how good it feels to tell people that I know understand.
PS. My shoulder is always here
Your friend. Gary S
I know and understand, I still remember running the courthouse stairs trying to catch lawyers etc. but I now go twice to the library in a week and I'm toast. So join the "ramblers club", I do it a lot too. Friend, the other Gary S
Hi my name is Heather. I have had CIDP for about 12 yrs. I am now 34 yrs. old. it started when I was having trouble walking & couldn’t even pick up my baby. I would be walking & all of a sudden I would fall down.I was lucky that they diagnosed me within 2 months. I was recieving my IVIG about every 3 months. Then my Dr put me in Celcept. That kept me in remission for 2 yrs. then my body became immune to the Celcept so I stopped taking it. I now have a nurse that comes to my house to give me my IVIG. The last couple of months I have been relapsing a lot. I have had 4 treatments in the last 3 months. 25g x 3 days. I am still weak. My Dr ordered another IVIG plus he is going to try my on Rituxan infusions. I hope it does the trick. I am sooooo fustrated because I have never felt this bad. I can barely walk. forget walking up an incline or stairs. i cant even do the landry anymore. taking a shower wipes out all my energy.I have 2 kids & husband & cannot take care of them. This isn’t me. I hate this & feel like the people around me really don’t understand how I feel. I had to go back on mood elevators because I am having break downs again. But staying positive that this to shall pass has helped. I wanted to thank all of you. Reading your stories has helped me realize I am not alone & that we do have hope to beat this cruel disease.
I experience all of the above daily. I think the fatigue is better than the pain some people have, So I ration my energy and if in the kitchen try and fill the dishwasher and the washing machine in the same time frame. Then wrecked I sit down and rest. Usually very cheesed off with myself; but once I got used to this I felt better about the whole mess! So your time management gives some satisfaction.