I have several general questions concerning your experience with CIDP.
1. Do you still work and if so do you have limitations?
2. Do you have the neuropathy nerve pain and how do you deal with it?
I was diagnosed in January 2014 after several months of rapid decline. I was in a wheelchair unable to use my hands or legs by the time I went in for treatment. I had plasma exchange and then switched to IVIG and am now able to walk with a cane and use my hands. I still have the nerve pain in the lower legs and feet. Some days worse than others.
My boss allowed me to work part time in the office and part time at home up until now. I did have to give up my travel assignments due to the illness. I'm now being asked to return to full time office work and to try going back on the road two months a year. The first workshops are in October and my boss is going with me to help teach the workshops and give me breaks as needed. I am really apprehensive of returning to the office full time because I still get tired without notice. I am really thankful for his understanding because I have used all of my medical leave. I do not have disability insurance due to cancer 7 years ago and a change in jobs.
3. How do y'all deal with the balance between work and family life? I feel like I give all my energy to work and then sleep when I get home. My husband has been understanding, but now that I feel better I'm wanting to do things with him and our children.
Thanks for letting me ramble. I have actually learned more from this group than I have from my doctors.
I was approved SSD on first application. Now focus on getting strength back. CIDP is one Social Security has not denied. Just have a 5 month no work clause…
Remember when making your decision that this is a CHRONIC illness and can come back in full strength at anytime. I don’t know how you can travel, just going to a short grocery shopping trip makes me have to take a nap. I don’t know how you worked, there is no way I could have. Your boss needs to educate himself on CIDP
In the long run you have to decide yourself whether or not you are able to continue to work full time. Your doc should be helpful in this because he must help lots of patients through the disability/work dilemma. As suggested, you may qualify for Social Security Disability benefits but personally I would keep that as a second option unless you are unable to handle the family responsibilities and full time work. You won’t know unless you try. Work pays more and is satisfying but in the long run, family is way more important and is the only support group that really cares, all the time. Good Luck, Geeps
About the pain, I take Gabapentin with moderate control. I supplement that with Mindfulness for pain ( form of meditation). That helps me. Mental attitude is paramount. Geeps
I could not think of working a 40 hr week let alone the 50-60 hrs I used to do. I also was approved for SSD on the first attempt. I have improved and hope to try 1-2 days a week, but some weeks are truly better than others, just as every day is different. Balancing work and home life will be a challenge until you are fully recovered, if that ever truly occurs. I take Gaba and ginger root for my nerve pain, which has me clear down to 300mg/day. I try every few months to drop that even lower, but have only managed to stay at 300 from 400 since June. Slow and steady wins the race. So don’t let your boss push too hard. It is not worth it! The price you’ll pay is way too high, my opinion! Your family is more important than work so don’t make too large a sacrifice of time from them in order to work full-time. As someone else said, Your boss needs to educate himself more thoroughly on CIDP, and it’s chronic nature.
I have quite a bit of pain, numbness, and weakness and take Vicodin, baclofen, Lyrica, and valium for it in various combinations. I work 80 hrs per week and just don't let much of anything get me down. As long as I have a wall to steady me, I can move around pretty good and only fall a few times per day. Sometimes, if my boss has caught wind that I have passed out or vomited from vertigo, she'll make me go home, see my neuro and get a note to return to work. I only stop if my body makes me. I know this may sound drastic to some, but based on past experience, I know that I would be terribly depressed if I were to just sit around at home which would make matters worse for me. So the way I see it, I've got to bank all the money I can right now because I know my "retirement" will come earlier than I ever expected it to and right now, there's no way I could ever survive off of SSDI. I have a dual diagnosis of MS & CIDP and am supporting 3 households. My father has terminal prostate cancer with mets to his liver and lymph nodes, and my brother hasn't worked in months due to his failing health and was just diagnosed this week with terminal lymphoma. I still have 2 children in high school and I know I can't stop for at least another 10 yrs and so until the good Lord tells me it's time to stop, I'm going to keep on going. I am a nurse.
I am now retired but was working when it all happened in 2012.
Yes you can work but what I found was that getting to the office was a trial (even though I am mobile) and the distraction of the ongoing pain was not conducive to work, particularly when dealing with more complex matters. At the time I was working two or three days a week.
Bottom line is just what you can manage and how far your employer is prepared to go to keep you doing valuable work (or work valuable to them) to fit with what you can manage.
As for question 1, I can no longer work. Besides CIDP I also have Stiff Persons Syndrome, another neuromuscular disorder. In response to your second question I have nerve pain constantly, the most severe being tonight. I have difficulty at times separating CIDP, Stiff Persons, and my many injuries I acquired on the California Highway Patrol.
I have been trying to care for my Ill wife for five years. For some reason I felt burned out with IVIG for six years and stopped the infusions and meds.
I'm too impulsive ., impatient, tired, and angry.
I'll most likely start again, but it depresses me to think about it.
I applaud you with your determination and strength.
My heart goes out to you Jan as I feel that you are pushing yourself too much to keep in work. This condition is a chronic one which takes time to adjust to both mentally and physically and I can’t see why after being diagnosed only this year January you are even working. I was diagnosed with CIDP in September 2012 prior to then I was a Child Protection Social Worker working 40 to 50 hours per week (although contracted hours were 37 hours per week) I had a heavy case load travelling around a lot on visits to families also to and from work. Leaving home most mornings at 7am and not returning until 7pm then on top undertaking work at home doing court reports etc. just trying to keep on top of things. Also was a single parent looking after my two children.
Then guess what it all came crashing down I ran myself into a wreak and now I have to just sit and think about work and that’s it. Was previously given steroids then IVIG The steroids stopped the burning sensations in both feet however the numbness remained also made me put on a lot of weight. I was then placed on IVIG and that worked to a certain point then my consultant said that it was no longer working and that I was in remission (still not clear as to what he means by remission) as my feet are still numb also experiencing a tight band around my rib cage and muscle spasms. I'm still not able to walk properly. September 17th 2014 will be 2 years since I've been diagnosed and I still hope and pray for full recovery. This illness came out the blue and I'm still trying to cope with being physically disabled when my brain is still sharp and often I think I can do things but when I attempt my feet will not carry me.
I mention the above to warn you and others that if you push your body too hard it will surely find a way to let you know that it can’t or won’t be pushed any further. I've since learned that stress is one of the contributing factors in the cause of CIDP. Hence if I were you I would stop working and give your body a chance to recover, although this a long term illness that will have varying episodes of increased symptoms then decreased symptoms. I'm not familiar with your Disability assistance there as I'm from the UK however feel that you should seek some assistance from them. Also aim to live on your husband's income if he works until you are feeling much much better before thinking of working. I know it can be frightening not working and having an extra income but which is better spending time getting yourself to a point where you are not struggling to focus on the job due to feeling pain or staying at home and looking after your health. I have a friend who always used to say to me when I was busy running around working HEALTH GONE ALL GONE. There is a UK support group on face book that I think would be of further assistance to you as they are a lovely bunch of people with the same condition as you. I’ve provided you with the link. https://www.facebook.com/groups/7829609636/
or here UK Guillain-Barre Syndrome Support Group - GBS/CIDP on Facebook
You can inbox me if you want to ask me anything else all the best Marcia
I do not work I am way past wanting to work. But there is not much that I don't do.(including chasing after a 4 year old great grandchild) I just choose the time and pace myself and take a nap when I need one. When my daughter was dying, I found the strength to help take care of her 24/7. You set your mind to what is important and you can do anything. The old saying "It's only a matter of mind over matter" is true. What is really important is to exercise. The more you use those muscles, the stronger you will feel. I have been thru pulmonary rehab sessions which were 45 mins every week day for 4 weeks. It improved my ability to function.
I Have pain up to my left knee and above my right knee and in both hands. It is slowly getting worse. When you had plasma exchange, how many times did you have it done? Could you describe how it affected you? Did you see changes immediately, within days, weeks, or months? I am looking for a change in treatment because I have been on my regime of IVIG long enough. (seven years)
I do not work I am way past wanting to work. But there is not much that I don't do.(including chasing after a 4 year old great grandchild) I just choose the time and pace myself and take a nap when I need one. When my daughter was dying, I found the strength to help take care of her 24/7. You set your mind to what is important and you can do anything. The old saying "It's only a matter of mind over matter" is true. What is really important is to exercise. The more you use those muscles, the stronger you will feel. I have been thru pulmonary rehab sessions which were 45 mins every week day for 4 weeks. It improved my ability to function.
I Have pain up to my left knee and above my right knee and in both hands. It is slowly getting worse. When you had plasma exchange, how many times did you have it done? Could you describe how it affected you? Did you see changes immediately, within days, weeks, or months? I am looking for a change in treatment because I have been on my regime of IVIG long enough. (seven years)
Does everyone get this sick from CIDP? Reading posts on this forum sometimes really frightens me. I was diagnosed with CIDP in 2011 and have received IVIG every 21 to 28 days since then without fail. I have mild symptoms and mild fatigue but mostly I feel the same as I did before CIDP except for some heaviness in my legs, a little weakness in my legs when climbing stairs or biking and some creepy/crawly feelings in my feet at night if I over do it during the day. I get up every morning and go to work by 6:30 am and don't return until 6:00 pm. I am the sole bread-winner of the family so stopping work is not an option. I also carry the health benefits. Reading how sick everyone seems to become frightens me. Will I get this sick in the future or can you remain the way I am, mild in symptoms for years and years? Is the road to destruction inevitable with CIDP? I am not trying to gloat because I am not as sick. I live with this disease every day and feel for all you who can't walk or live normally. I spend a lot of time reading on this forum but more often I feel so scared that I will go down the same road soon. My CIDP was caused by the flu vaccine so I was not sick before and was diagnosed and started IVIG within 5 months of the vaccine. Maybe that made a difference in how the CIPD is affecting me.
ChirpyBird: You are quite fortunate to be diagnosed and treated so quickly. Keeping current on treatment and quickly adjusting that schedule as needed is crucial. My drs experimented spreading out my treatments way back several years ago. I lost some function as a result. It has come back, but very slowly! We are all different, so I would not say that erosion of function is inevitable, but be very aware of your trends and if you feel something coming on aggressively, get your dr on it immediately! Having treatments more often if needed should help reduce any potential loss of function or increased pain. I eventually changed MEDS as IVIG was no longer giving me any kind of “boost”. Best of luck to you. Stay Positive!
Chirpybird, I have the same concerns. I was diagnosed in June of this year and my symptoms are basically numbness in both my hands and feet, extending to my elbows and to above my hips. Fortunately I experience very little pain, just the constant numbness. I began I IVIG treatments the first week in July with no results. The doctor started me on chemo the first week in August. I don’t feel much, if any difference, just a different feeling in the numbness.I am hoping that the “feeling” is the sheathing repairing itself, but I’m no doctor.
My fear, like yours, will this condition progress. I feel extremely fortunate after reading this forum. I had no clue what this disease was until I was diagnosed and had one idea the extreme conditions that could come with the disease. Again, I feel extremely fortunate, but nervous at the same time.
When I was first diagnosed I had never heard of CIDP so I didn't feel scared because my neurologist didn't seem that concerned - she just tossed out the name CIDP is what she is thinking but needs to do more tests to confirm. That day I went home and googled CIDP and started to cry when I read what the disease was. I was so frightened and thought my life as I knew it was over. The next time I went to my neurologist I started to cry and break down in her office. She consoled me and said that I should not worry, that she had many people living with CIDP that lead normal lives and it did not disrupt their daily routine much. She was very aggressive in getting me a diagnosis right away so that insurance would approve the IVIG and I could get started. I was fortunate that I did not wait years and years for a diagnosis. So as she advised me, my life has not changed much except for the fact that I am tied to the IVIG infusions every 21 days for the rest of my life. This sucks and is expensive. I find that the mental part of this disease is affecting me more than the physical part. I have anxiety about my future and worry that I will become disabled and in pain like so many of you suffering on this forum. It keeps me awake at night and weighs heavy on my mind most days - especially the days when I am experiencing heavy feet or tingling. I worry about retirement and getting the IVIG once I am on Medicare and not on private insurance. I want to have the SCT to make this go away but don't think I would be a candidate since the IVIG keeps my symptoms at bay. Also not sure if I want to risk the long-term effects of high doses of Chemo at this point in my disease. So I go on and hope for the best and maybe a different cure some day other than SCT.
The Dr hasn't said yet what we are going to do does plasma work? He mentioned chemotherapy I don't see that helping this condition so I say no to that.but ivig has stopped working have to do something but what? Any suggestions?
I was diagnosed with CIDP right after having a baby in the first week of maternity leave. Although I have a walker and walk VERY slowly, can't drive, have numbness in feet and legs and fingers, I was THRILLED to go back to work this past Monday. As a professional business woman, I feel empowered to be back at work even though I am not my regular self. My husband and I are adapting quickly to the new lifestyle, with an added baby (we have no other kids). It is not easy and I feel guilty about not helping around the house, cooking (which I LOVE to do), changing diapers, etc. but work has given me a purpose. My problem is that I am in upper management for a nonprofit and fundraising is a key role, which requires me to be out of the office. I want to encourage you. I hate having this condition, I hate having to be patient, I hate not being able to drive, and I hate having to adjust my life for this. I know that changes have to happen and I may have to make difficult choices in the future depending on what happens to me, but I encourage you to not let getting tired make you shy away from doing something that makes you happy, gives your purpose, or supports you and your family. You will find a way to make travel easier and get into a system that works for you.
I may be acting like Pollyanna but if we aren't our biggest cheerleaders, who will be?