I was diagnosed with CIDP in February of this year. Have tried 2 different brands of IVIG (which I thought seemed to help aside from the side effects) and have been on oral prednisone and Cellcept since April. I have gained 30+ pounds and now my symptoms feel as though they are getting worse. My left arm and leg are getting weaker and burn and tingle. Initially, my weakness and symptoms were primarily on my right side...now my left side is affected too. I FEEL SO INCREDIBLY EXHAUSTED all the TIME!!
I work full-time as a Medical Social Worker in a hospital and am on my feet...A LOT. I have never been hospitalized for my CIDP, only home infusions and oral medications thus far. I don't walk with a cane or walker but I feel so weak and wonder how long I can keep doing my job effectively?? The hardest part is the exhaustion and getting up for work in the morning. I try to sleep and rest my legs as much as possible on the weekends so that I can make it through a five day 40 hour week on my feet.
Anyone else on here work full-time? If so, how/what do you do to cope and revive yourself? My neurologist states that physical therapy does nothing for CIDP patients because PT won't improve the neuropathy; yet I hear others on here state they go for physical therapy. I would think strength conditioning would be helpful to keep my muscles from atrophy.
I look forward to hearing from you all and how many of us are still working full-time. Oh, and I'm also a single mother with a teenager about to graduate from high school this year. I have no family in state and so do most everything for myself (i.e. grocery shopping, driving 70 miles round trip to work every day, housework, etc.) I don't do it because I have the energy and vitality, but because I have no other choice.
Lisa in Michigan
I am a licensed health care provider. I went out of work in March after 27 years of practice. There is no way that I could continue with a level of skill and safety I expect from myself and for my patients, and after 9 months have debilitated in terms of activity and independence much more than which you describe.
I would recommend that you take a good look at your abilities, and what work is doing to or for you- it may be detrimental to your health or may be keeping you at a higher level of function. Either way, I would seriously consider looking into disability through social security, and private insurance if you have a policy. My SSD was approved in 3-4 months. Your physician(s) will have to support your disability when and if the time comes.
Depending upon the type and frequency of your treatments, side effects CAN be used to determine disability, but SSD is never straightforward. Good luck- this disease is really a journey that takes each of us to different places.
Hi Lisa. I too feel exhausted all of the time. I have had to cut my work day to just a couple of hours a day. And this is for a stinking desk job. I feel pretty good in the mornings, but by noon, I'm shot. I go home and take a nap. Sometimes the nap rejuvenates a little bit, sometimes I feel worse and get headaches after napping. I have two young children, and fortunately a trooper of a wife, or I would be lost at this point.
Hi Lisa, I've had CIDP for seven years now, since 2005 and worked until 2010,when I finally had to bite the bullet and retire. I worked as a mental health worker for over twenty years and loved my position so to me it wasn't really work. In my spare time I rebuilt computers and taught guitar. In 2005 the ministry of transport decided it was time to upgrade their system and I was given sixty desktop computers, twelve laptops and I can't remember how many printers, along with a full skid of IBM keyboards (in individual boxes), which the ministry decided they didn't like but couldn't return. After re-formating all of the hard drives on the computers and re-installing the basics to make them usable, I gave them away to any client that was interested, or wanted to learn. I now have my own business called "Mint Condition" Computer Repairs, in which I teach and repair computers on my own schedule. I keep the cost down by operating from home and have persons with disabilities as a priority by charging only twenty dollars per visit. I'm not out to make money, but to provide a service to people who can't really afford it. It keeps me out of trouble and busy when I'm able. Since you don't use a cane or walker, with the right treatment or remission you could go on for another twenty years or longer. Good Luck, Gary
I was in the hospital but went back to work about 6 weeks after coming out. The biggest problem for me is the fatigue. I just wish there was something to take for it.
I was diagnosed 7 years ago. I am still working full time and can't begin to imagine the day when I can't. I am also the main provider for my family. I am exausted too when I get home at night but I would have to say it's age and not my illness, although I hear differently? Keep positive.
Lisa, you sound soooo much like me! I have been working full-time since my diagnosis, but had to change the type of work I was doing. I will add another note this evening and share more details. Right now...back to work! Julie
I was diagnosed in February 2012 (had it much longer) and I still work full time. I struggle with fatigue and balance problems and due to this I miss a lot of work, but on good days I’m so thankful to be able to still work. I am also blessed with understanding co workers and they can’t do enough for me. My doctor has me on Family medical leave and that helps to protect me when I can’t work… if you don’t have that I would suggest getting the paper work completed by your doctor. Hope you have a nice day !
I agree with most who say fatigue is the biggest problem. Weakness in my leg muscles requires more effort to walk leading to more fatigue. Prednisolone is notorious for weight gain. Weight gain leads to even greater fatigue. Fatigue leads to despair. Despair can lead to clinical depression. Seek advice in this area of medicine. Driving, working, raising children is a handful. CIDP makes everything more of a challenge.
You sound like your situation requires you to work so I will only comment on what works for me and might work for you and understand everyone's symptom complex is different.
Swimming seems to relax and stimulate my legs. Over many weeks I worked up to 45 minutes of freestyle swimming 3 times a week. I am a little tired after the swim. But, the next day I have much more energy walking. But, do get some form of exercise. And, seek a professional to advise you on proper footwear while at work. I am on my feet 3 days a week. ( I still work 2 days a week and volunteer at an elementary school one day.)
Retired - so now I work at my own pace.
Some things I would now push harder than at a "real" job (like physical exhaustion barriers) but now I can choose when to get into those more complex thinking type jobs that are disrupted or disturbed by the CIDP symptoms.
The other luxury of retirement is that I do not have that daily commute which in itself promoted symptoms.
I work full-time, plus I have to young children. I get to sit down for my job, which helps a lot. I am on Gabapentin and have monthly IVig infusions. Sorry to hear that you are struggling so much
I was diagnosed two years ago with CIDP, 12 months after major spinal surgery. In hind sight I think the spinal problems camouflaged the CIDP so now we (the specialist as well) assume that CIDP was there prior to the surgery. I am semi-retired so have the luxury of picking and choosing my hours and days. I find that fatigue fluctuates from day to day and am likely to “measure” myself first thing in the morning and then act accordingly. I was on IVIG last year but that ceased due to other side effects. I have recently re-commenced with another type of IVIG (so the specialist states) and this has not brought about the previous side effects although I cannot feel any changes in my symptoms. Due to the weight problem associated with some of the meds, so far I have been able to remain “med free”, not sure how long this will last as one of the consequences is very disruptive sleep. I have tried Physio but find that I use only some of the exercises so do maintain these at home rather than through a clinic. As with the others, this CIDP seems to present differing symptoms and restrictions for each of us. It would be great to actually read of someone else who has exactly the same symptoms. I also have sensory Ataxia as well as “getting older” so there is some level of questioning regarding what is effecting me today, is it CIDP, aging (I need to be honest with that) or the sensory ataxia. I am thankful that I have a very supportive wife and family. I do persist in achieving my goals each day as for me, I need to have some level of accomplishment in my days. Interesting how many replies are working within the human sciences field (I was in Child Protection for over 25 years and now manage a Church Community Support service network). Blessings to all of you over this Christmas season and don’t give in or give up.
I'm in Texas, and yes, I work full time, but am not on my feet----mainly on a computer all day, so that helps. However, by noon each day, my feet feel very numb and tingly and my arches almost seem to curl up. The one thing that does help is that I go to the gym almost every day after work, and walk at least a mile.... That REALLY helps! the numb feet are very frustrating. Your schedule wears me out just reading it---it would be tough for a WELL person! Best of luck!!
You are amazing!!
I’m on medical leave right now but intend to go back. It was a bit much mentally and physically for me when I was diagnosed and promoted this summer. I’ve been off since October and expect to return at the end of January.
I have a desk job but I’m going to have to have to pay attention to what my body is telling me when I go back.
I definitely think physical therapy helped but there were so many factors… Not working, meds, sleep, etc.
Hang in there and I look forward to chatting more!
I'm so sorry you are going thru this I will keep you in my prayers. Have you ever tried water exercises it can strengthen you with less impact on your joints.Maybe to help with your energy you could try B vitamins and look up R-Alpha lipoic acid.My son has CIDP and was diagnosed just before his Freshman year in College he has a scholarship for soccer but that wasn't GOD'S plan. He has had 2 relapses but does great with IVIG he is actually running and kicking the ball he is 18 soon to be 19. If you get headaches have them slow down your IVIG and I'm sure you know lots of water. You are amazing doing everything you are doing How long did it take for your diagnosis? We were fortunate enough to have a diagnosis within 2 months and start treatment right away I think that is why Matt is doing so well.Try to get off the prednisone its so bad and causes weight gain which makes you feel worse.look into natural ways to stop inflammation . Try Neurothopy support formula it helped the tingling in my sons hands and feet.
Stay positve and many blessing on this journey,
Wow! You sure have a lot on your plate. My husband is the person with CIDP (diagnosed two years ago). He is still working full time but has a desk job which is much easier as it does not involve being on his feet too much although sometimes he has to attend client meetings (sometimes overseas because we live in Bermuda). That's when things get difficult. He walks with a cane. He helps as much as he can but I do most of the running around (grocery shopping, running errands). He does feel weak most of the time especially if he overdoes it. He rests his legs in the evenings and on weekends so that he's pretty good on Monday but very tired by the end of the week. Our neurologist has also said that PT does not work but I have also heard of people who go to the gym and have special trainers. I know of one woman in Canada who has had CIDP for 13 years and is a partner in an accounting firm. That's just our experience. Don't know if this helps you.
Wow - I felt exhausted reading all that you do Lisa. I was diagnosed in December 2010 and have been unable to work since. Its been a roller coaster and a mental challenge - love work - love people - .... so have felt quite isolated in the "healing process". Had about 6 months of the IVIG and struggled for a week afterwards and no real benefits.
At first I was told to avoid physio and massage - turned to acupuncture and JSJ ( Jin Shin Jyutsu ) brilliant and helped with my energy flows. I do it twice a day and when relapsing or high levels of fatigue ( more often ). ( If you know it - I do the Central flow and also the hand energy fields )
Its a delicate ( financial ) dance not to work - to adjust one's life style to a different way of living - not bad - but an adjustment on many levels. Of course what has happened to us impacts on everyone. I tried to minimise the impact and keep "same same" - but my fatigue got worse.
I read a great article recently - Living with CIDP - Coping with Uncertainty - it was wonderful on all levels. Not sure how to attach - i'm new on this site and happy to be here. ( If you don't have and would like let me know and I'll see what I can do )
I spent many months in the pool - which helped my muscles but irritated my nerves - it seems that everything points to the word 'balance' and then just when you think you have 'balance' you have an unexpected relapse.
Im blessed with a 'glass half full' attitude - i try and move my mind and have a list of 'things i love to do - when I cant move' that helps me through. I hope to build my energy to work three days a week in the New Year - but full time I feel would leave me constantly depleted. Tough for me and those around me.
Lovely to share - take care of you
I couldn't work full time. I actually couldn't work part time either. My cidp is just too unpredictable from one day to the next. At least right now. I was paralyzed. Now I can walk with afo's and a cane.
Sounds like you and I have a lot in common.
I was working full time for nearly 4years after being diagnosed but then reduced my working week to 4 days to give me a 3day recovery period.
I now have ivig, (s a hospital day patient) for 4days very 4 weeks, and am finding it increasingly difficult. Like you the getting up in the morning and the drive into and from work mean that I have limited energy at the end of the day.
I now have some help with home tasks, (cleaning and gardening) and have discovered the absolute joy of on line grocery shopping!
Put yourself first sometime!
Cant add much as i was given my disability on another doisease and was diagnosed with cidp a month later but i can say i do have a friend that is a social worker at a childrens hospital with our problem and she uses a scooter chair to go up and down the hallways. She says it really helps to reserve engery. You thought about that and using those available chairs at the department stores. I do when im weak or to exhausted as i dont have much feeling in from my knees down but i make myself walk when i feeling good. big hugs ...amy