AnonymousFebruary 8, 2010 at 3:48 am
i just i just need to vent, not any one or about anyone but MYSELF, im so tired all the time. befor i got sick in 2005 i had a thriving nail bussiness and was an educator for OPI ( Proff nail product company) i ran my bussiness and educated around west virginia and ky.plus i had one kid in college and one in 8 th grade and a great husband.
Then BAM out of no where i get cidp, dont know where i got it or how, did the whole PP and IVIG, was in wheelchair for6 mo,rehab in house at hospital for 6 weeks, made it back from walker to quad cane and AFO’S then to cane at one point i was doing IVIG 2 times a week and the dredded steroids for 9 mo. i think i finally have in under control, doing IVIG every 4 week. i am on nuriton and loritab for pain plus i need something to sleep and an ativan. but my whole body aches all the time and i am soooooo tired all the time.
i guess i just feel that my life is going nowhere, im on disabilty and just moved to nj, my husband got laid off in wv, so we decided to move back home where we are from so we would have more family support, right now we live with my parents ( thank goodness they have room), i don’t know im only 46 and i don’t know what to do with the rest of my life, im so scared that im going to relapse,every time my husband wants to do something i am always to tired!!!! i was thinking about joining a gym, but then there is the money issue, things are so tight right now.
thanks for listining just needed to vent
February 8, 2010 at 4:30 am
I just want to send you a gentle hug.
AnonymousFebruary 8, 2010 at 5:49 am
It seems as soon as we get sick, the universe points a finger and says ‘ now I can really mess with them’.
I think anyone saying ‘be positive’ is missing the point too.
You just got to hope for better things and health.
Basically, its all a real ‘bugger’ and you’re quite justified in feeling angry and afraid.
You just gotta keep fighting, I guess.
February 8, 2010 at 7:03 am
Tiredness is part of CIDP so just give in and get a much rest as your body asks for. Rest.Rest.Rest. It takes time for the nerves to come back and waiting seems like an eternity. The healing nerves take their own sweet time to come back but they will slowly. The fatigue should lift as the body heals.
It’s sounds like you’ve improved a lot and it’s good that you want to exercise.
I have a problem with overdoing exercise and even just a little extra wears me out for a day or two. My doctor cautioned me not to overdo it and I had to learn the hard way.
I like to walk and I use a four-wheeled walker to the store, because I not only feel safer, but I can carry all my groceries home on the walker. The walker allows me to walk over treacherous terrain and I am not afraid to go a good distance.
I also have access to a tread mill and a bike. If that were not the case I would find a home exercise machine of some sort. Joining a gym would be too expensive for me also. I have heard of stores that sell used treadmills and used bikes as well as other machines.
You sound more agile than me, but find a machine or exercise program that you enjoy and save up for something affordable. Maybe you can get a video and follow an exericise routine. You could maybe set up a walking regime outside with your cane part of the time and put on the music in the house and devise your own exercise on other days.
These are just some ideas and I hope you come up with an enjoyable way to move and have fun.
Things are going to get better for you and if you’re impatient like me it will seem to take too dogonned long, I know. But hang in there and keep posting, because you will learn a lot from others here who can help you cope with this CIDP.. Ask a lot questions and take care of yourself.
I hope you have good neruo in NJ also.
AnonymousFebruary 8, 2010 at 11:14 am
The way it was explained to me by my neuro, is that once the nerves we are born with become damaged by CIDP, they are never quite the same. So we are always forcing damaged or resprouted nerves to send the signal to the muscles, which wears one out. I am 8 years out, but left with a lot more residuals than you, & find I must get about 11 hours of sleep/rest a day in order to feel somewhat normal. Exercise is good, but don’t overdo, as you will pay dearly for it. It is a fatigue that one can’t really explain to family members, isn’t it?
AnonymousFebruary 8, 2010 at 7:57 pm
You found a doc who diagnosed you! That is your first lucky break. Depending on your meds? They could explain your exhaustion, not to mention the ‘assault’ on your body this immune stuff does to you…
I found that I got both my mind and part of my body back by changing off of neurontin to another med. I’d been sleeping 16-18 hours a day on the neurontin and I had to change neuros after a second opinion. I’d even fall asleep in the middle of a sentence and wake up 30 minutes later and complete it! We each are different in how we tolerate the different meds possible to help w/our pain. And we each get different side-effects as well!
To get back into some sort of action plan? I suggest you talk w/your neruo and get not only a list of Physical Therapy places, but maybe get names of therapists? You don’t want anyone who is like an army drill sargent! You want someone who respects your condition and helps you make the MOST within your limits. I have found doing short reps – repeated thruout the session, rather than all at once, work best for me. Having simple exercises to do at home that are safe helps also so you can do them at your own pace. I hope this helps YOU? I know it’s hard to ‘get back’ but the more you do, the better it can be in the long run. Keep faith in your instincts as to right/wrong. YOU are likely right! – Hope and good things!
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