Please don't ever feel sorry for venting, I think it is absolutely necessary with this disease to talk about your frustrations. My feet feel much like yours at the end of the day, so heavy and burning pain. That tells me I have gone beyond what my body can handle. When it gets to that point it helps to elevate my feet and sometimes use cold compresses to take some of the burning away. What are you taking at school? I worked from home doing medical billing and data input. My hands hurt too bad for extensive typing and I can't sit or stand for periods of time so I have recently broke down and applied for disability.How old is your son? Are their activities you can do with him such as going to the library, movies,etc? Also resting for a few minutes while out and about should help. Do you take anything at night to help you sleep. I take Gabapentin and Vicodin now after several sleepless nights and it has really helped. I used to have a terrible time finding good veins for the nurses to start the IV, now I have a port and it is so much easier. Don't feel like you always need to be up and cheery on this sight we are here to listen, support, and occasionally might have some good advice. Peace
GonnaGetBetter said:
Im so frustrated! I made a specific plan to change my career. Went back to school to acquire the skills and training needed to secure a great job. Then....this "disease" comes from left field with a 1•2 punch and I feel like Im going in circles now. I don't want to be on SSD, I want to be involved in my child's schools trips to the Zoo but my feet swell like balloons after 15 minutes. My hands are almost useless as I drop most things or I won't even attempt because I know it will just end up on the floor. My 6 yr old opens my water bottles!!! I feel so helpless. I was hoping that by seeing an experienced Dr in CIDP and getting the correct dx that I would see a light at the end of this tunnel but it seems as though I may just be entering and have quite a journey ahead. I had my IVIG today and of course still feel the same ,minus the 2 big bruises from getting stuck by "specialty nurses". My feet feel like cement blocks frozen in ice and burn so bad. So red and swollen. My hands tingle and feel prickly....so annoying. Im so tired but that may be because I've been up since 1am. I've become an insomniac. I never sleep,im short tempered,my poor son sadly takes the brunt of this because im always tired and miserable and i just CANT PHYSICALLY do things with him. I try so hard to stay positive...I really do! But nobody has a clue as to what I face daily! I will continue with school and become certified. I can only pray that my hands and feet allow me to work and LIVE MY LIFE WITH MY CHILD! This is one of the hardest things to deal with, I am being robbed of enjoying these amazing years of fun and discovery in his life. Sorry to vent,
Ditto on Bowel & Bladder. DEPENDS are my friends. My Temp used to be high (99.5 WAS norm) and I never needed a sweater. Now my temp fluctuates, and I sweat uncontrollably from my head, neck & back, even in 55F weather! My BP has been steady, BUT I was already on lisinopril due to Diabetes. To boot, the L-SV CIDP has made my Diabetes "morph" from Type II to Type I, as my autoimmune system has attacked my beta cells along with my nerves. I agree that this disease has made my life less than satisfactory BUT I refuse to give up! F*ck Demyelination!!!
DocMac said:
I have the bladder, bowel, temperature, and BP problems. My BP shoots sky high or drops way too low. My body temperature is 96 degrees and that's "normal" now. I have a very narrow tolerable range of environmental temperatures, so I dress fom sleeveless to a sweater and two jackets. I empty my bladder on a time schedule since I can't tell "when" I have to go. I get IVIg every 6-8 weeks for two days, inpatient because it makes my blood pressure drop so suddenly and unexpectantly. I am fairly stable as far as disease progression, but my life is less than satisfactory.
I agree with what was said before, NEVER feel bad about venting in this group! We know what you're going through! My wife has had to take over more of the parenting roles with our two kids, and she has her own med issues (Lupus & RA). I'm going back to college myself soon. Go to the Department of Labor (DoL) website and search for "vocational rehab" to get assistance in getting re-schooled in a career you can work around the CIDP. No, you'll probably not make CEO, but you should be able to get into a career that you can enjoy.
GonnaGetBetter said:
Im so frustrated! I made a specific plan to change my career. Went back to school to acquire the skills and training needed to secure a great job. Then....this "disease" comes from left field with a 1•2 punch and I feel like Im going in circles now. My 6 yr old opens my water bottles!!! I feel so helpless. I was hoping that by seeing an experienced Dr in CIDP and getting the correct dx that I would see a light at the end of this tunnel but it seems as though I may just be entering and have quite a journey ahead. I had my IVIG today and of course still feel the same ,minus the 2 big bruises from getting stuck by "specialty nurses". My feet feel like cement blocks frozen in ice and burn so bad. So red and swollen. My hands tingle and feel prickly....so annoying. Im so tired but that may be because I've been up since 1am. I've become an insomniac. I never sleep,im short tempered,my poor son sadly takes the brunt of this because im always tired and miserable and i just CANT PHYSICALLY do things with him. I try so hard to stay positive...I really do! But nobody has a clue as to what I face daily! I will continue with school and become certified. I can only pray that my hands and feet allow me to work and LIVE MY LIFE WITH MY CHILD!
I live in South Africa and it took a lot of Neuroligists and other specialists before the Prof( yes my name tag is him) diagnosed CIDP after an extremely simple test of shooting an electric current down my legs and measuring response. It took all of five minutes. I have tried evrything from IVIG to Perdnison and immune suppresants, I even had a neuro stimulator implanted to help with the pain but my body rejected it. After all that whinging I still feel positive and have my Psychologist to thank for that he taught me a thing called mindfullness and I find it does help with the pain. I believe with the problem we suffer from the use of a Psychologist can really help even my Neurologist says that one of the triggers in starting CIDP is stress and the pain is worse in a stressfull situation. I hope for a pain free day for all.
Hello from Olympia,WA! I am also seeing a counselor. It has helped in so many ways, I have been able to identify stressful events and be able to calm myself much sooner avoiding the painful aftermath of burning painful out of control nerves. If people have the opportunity(my insurance covers it for now) I highly recommend asking for help with this overwhelming life changer. Peace
profmodi said:
Hi,
I live in South Africa and it took a lot of Neuroligists and other specialists before the Prof( yes my name tag is him) diagnosed CIDP after an extremely simple test of shooting an electric current down my legs and measuring response. It took all of five minutes. I have tried evrything from IVIG to Perdnison and immune suppresants, I even had a neuro stimulator implanted to help with the pain but my body rejected it. After all that whinging I still feel positive and have my Psychologist to thank for that he taught me a thing called mindfullness and I find it does help with the pain. I believe with the problem we suffer from the use of a Psychologist can really help even my Neurologist says that one of the triggers in starting CIDP is stress and the pain is worse in a stressfull situation. I hope for a pain free day for all.
I can definitely relate to what you're going through. Mine started with pregnancy too. I'm only 36 and have a 1 year old to look after. At first they told me it was "fluid retention"compressing the nerves, then later carpal tunnel. 2 weeks postpartum the weakness hit. Like you I couldn't open bottles, clip fingernails, turn doorknobs etc. I had 4 operations on my arms (2 on each side) before I was diagnosed. I couldn't even take care of my baby. I was terrified of loosing my job, etc.
It took several rounds of IVIG before I started to improve. I can now open bottles and clip fingernails but don't have full strength back. It stopped the numbness from progressing. My biggest challenge is driving. I can go about 15 min. but have to stop after that. I was able to return back to work with some modifications. I work in a hospital and sit at my desk more than I did before and have a stool to prop my feet on. I have voice dictation software to use instead of typing. I take a paratransit service through the bus system to work that gives me door to door pick up. I have to modify things around the house so I don't over do it, like pushing the laundry in a rolling cart instead of carrying it or using pre-packed food from the grocery store-- like cut up fruit instead of cutting it myself. I have many days where I am scared about the future or angry about "wanting my life back", but you have to keep moving forward. Hopefully now that you have a diagnosis you'll get better treatment. Drink lots of water starting several days before, then during and after IVIG. It will help cut down on the headaches and side effects. By the way, did your doctor mention anyting about the connection between CIDP and pregnancy?
I also have Hypogammaglobulenmia. Its an Auto Immune disease...low levels of IgA & IgG. Ive had it fore years, but was asymptomatic so it was never addressed. This of course now adds to my CIDP...as I can not take immunosuppressant meds. or I will have to keep on the IVIG. I must say I dont see any improvements from the IVIG its been 4 months.
I just saw my new specialist last week and go back on the 13th for EMG and further discussion about everything.
I do know that any type of stress,accident or pregnancy brings out CIDP...especially pregnancy. OUR BODIES GO OUT OF WACK!!! but its well worth it in the long run....my son is the light of my life! Sadly,the pregnancy that brought this on ended at 8 weeks :(
Please do start the paperwork for the SS diability - you can always cancel it, even after you've gotten it started.
Also, you sound like the "The Spoon Theory" might give you some comfort, I loved it as it sooo accurately describes how I feel. It also helped several of my friends and family understand what I am going through. Check it out at: