I am so upset, I finally was able to walk 30 minutes on the treadmill and now I have to stop because my legs are hurting so darn bad. I was walking to help lower my cholesterol and maybe help shed a few unwanted/needed pounds and help with the pre-diabetes thing and then I get knocked for a loop. This upsets me so much! All I wanted to do was TRY to help better myself, instead I landed my big butt in a wheelchair for 3 days straight!! This disease STINKS!!!
Thnaks for listening,
Char
Dear Char, I'm so sorry you are going through this and boy can I relate! I don't have my official diagnosis of CIDP yet (have to rule out MS) but I had GBS almost two years ago and keep having "bad spells" when I try to exercise or when I have a surgery or when I get a cold. I finally decided something was going on and I needed to see a doctor. I'm awaiting tests and treatment. IVIG treatment got me a whole lot better from the GBS first bout so hopefully it will help me again.
I couldn't believe that whenever I tried to excercise or even just have a busy day with housework, etc. I would end up in bed for a couple of days afterwards, just feeling so dead-tired and achey. I keep trying to move forward with my life and my body always says "no." to me.
So I can understand your frustration, your feelings of physical discomfort, and also the fear of not knowing what the future holds health-wise. It's awfully hard. Please be gentle with yourself. You have a very serious disease and it's okay to rest when you need to. You might need to accept a less strenuous exercise routine. No one expects someone undergoing chemo for cancer to run a marathon, and we probably need to be just as gentle with ourselves over this disease because it is just as debilitating in its own way as cancer if you ask me.
I hope you feel better soon and I hope that you will do things during this rest period like watch favorite shows, read a nice book, cuddle with a pet, etc. because you deserve these treats!
Yep - it does that. Exercise heats the muscles (and therefore the nerves) and that (I was told by my neuro) will result in pain.
If you have access to a pool you may find that exercise in water will be easier with less impact and hopefully less pain.
Lots I have seen indicates that you really have to push the exercise in spite of the pain. My neuro would probably say "harden up" (or something like that - while waving his really badly arthritic - and most likely really painful - hands at you - don't get much sympathy from him....)
Sorry :( It does stink...it's rotten and down right nasty!!!
I feel for you...as hard as it is, we must remain strong and postive.
(easier said than done) Im still waiting on an exact dx after 27 months of a steady decline!
Hang in there , we will all make it through this crap together!
I have two comments. 1) When I had GBS, I could feel nothing at all. 2) You are correct - exercise does tend to cause pain.
Please do what you can each and every day. It is important to stay as active as possible and as productive as possible.
Do not get caught in the "CNN" syndrome - that disease is more debillitating than either GBS or CIDP. It turns your brain to mush.
Pursue joy and happiness each day in every way. Concentrate on your blessings.
I am a firm believer in exercise, even though I hate it myself. But, if you don't exercise, you lose muscle strength, in addition to the nerve damage, so it is a double whammy.
I had been told several times to "exercise to tolerance," but never understood what that meant. I finally cornered a doctor and asked what "exercise to tolerance" really means. He said that if you feel worse the next day, you have done too much. I have done that a few times, and it sounds like you have, too. So, now I really try to watch what I do, and if I feel unusually weak or tired the next day, I back off a little bit the next time.
About a year ago, I started going to a gym three days a week. I keep a record of exactly what I do each day. That way, I know how much I ought to be able to do. For example, if I did 20 minutes on a stationary bike with a resistance of 8, and didn't have problems, then I ought to be able to do the same thing a couple of days later, even if I don't really feel like it. It is very frustrating to watch skinny little teenaged girls do more than me, but I have made slow but steady progress. You just have to put that behind you, and consistently do what you are capable of. Seeing the written records of improvement really helps with motivation, even if it is slow.
Good luck!
Bill
I hear you! I remember feeling like that and if I had it to do over I wouldn’t put so much pressure on what I can’t do. Cut it down to 10 or 15 minutes when you recover. You are in a whole another world now. Sad but true!
I'VE GONE DOWNHILL QUICKLY SINCE MY Dx. I'm surprised it's taken you so long for your Dx. Mine took about 2 weeks. Neuro looked at recent symptoms, went for an EMG/NCS, SENT ME FOR A SPINAL TAP TO CHECK FOR PROTEINS AND WHAMO, I WAS DX WITH CIDP. Excuse the switch between caps, and small letters, i shake so much, it even hard to type and dont ask me to write something! Exercise for me is walking 15 feet to the bathroom and 15 feet back, and my legs are spent. My lack of strength may also be due to lack of exercise, but the docs are saying I also have "muscle myopathy" from the Prednisone. I free 100% with GonnaGetBetter, but somedays it's really hard to keep pushing through!
Good Luck & God Bless us all! Henry
Good Morning, I'm so sorry you're having a bad day. I had one of my weekly plasmapharesis treatments yesterday, and was to do two hours of physical therapy this morning....I thought I was having a good day, so I planned to go to therapy after dropping my kids off at school, but i became so exhausted just between making lunches and driving kids to school, that I became so exhausted and began to cry on my way to therapy...so I decided to listen to my body and drove to therapy and walked in and cancelled it for today. I, at first, felt "proud" of making a good decision due to my exhaustion, but then cried all the way home because I knew my husband would not understand...I've been struggling with CIDP for 13 months, and he still does not understand that I will have "bad days." So, "Char68", I 100% commend you for listening to your body and feeling that you were "overdoing it." It's ok that you that you had to stop the treadmill today, it doesn't mean that you'll have to stop the treadmill everyday...just take a walk around the block to start tomorrow, and see how you feel :)
I was advised by my doctor that swimming or exercise in a pool is best. I had to stop swimming, but I found just walking the pool in a salt water pool really helped.
I’ve had this disease for 10 years and the one thing I have learned is to listen to your body. You need to rest when your body tells you it needs it and not feel guilty. You did not choose this and if you had a choice you would choose to be healthy. Just do what you can to help your body be as strong as it can be.
Hi Michael, I just read your post and felt I needed to respond. I have been told over and over, not to try to push through pain, it will only due more damage. Exercise is very important, but don't damage yourself! peace Nancy
Michael C Stark said:
Yep - it does that. Exercise heats the muscles (and therefore the nerves) and that (I was told by my neuro) will result in pain.
If you have access to a pool you may find that exercise in water will be easier with less impact and hopefully less pain.
Lots I have seen indicates that you really have to push the exercise in spite of the pain. My neuro would probably say "harden up" (or something like that - while waving his really badly arthritic - and most likely really painful - hands at you - don't get much sympathy from him....)
Thank you so much everyone for listening and for your enncouragement. I so love the idea that there are others that understand what we each are going through. I appreciate all of your suggestions also. Hopefully I can get back to my walking but in smaller increments.
Thanks again, Char
Hi Nancy - Appears everyone has a different idea on that. In fact my neuro (while not encouraging pain) went so far as to say that there really is nothing you can do to make it worse (except not get treatment). I have done a great deal in the past few months to make it feel worse but in spite of venturing into occasional excessive pain I really have not noticed any base-line change when I have had a chance to rest and recover. Which I do occasionally!!! Just too busy to let a little thing like pain stop me. Limited - yes - stopped - no.
nancy said:
Hi Michael, I just read your post and felt I needed to respond. I have been told over and over, not to try to push through pain, it will only due more damage. Exercise is very important, but don't damage yourself! peace Nancy
Michael C Stark said:Yep - it does that. Exercise heats the muscles (and therefore the nerves) and that (I was told by my neuro) will result in pain.
If you have access to a pool you may find that exercise in water will be easier with less impact and hopefully less pain.
Lots I have seen indicates that you really have to push the exercise in spite of the pain. My neuro would probably say "harden up" (or something like that - while waving his really badly arthritic - and most likely really painful - hands at you - don't get much sympathy from him....)
Hello everyone. I've been with CIDP for the last 4 and a half years. I was doing better the last year walking with a cane, but 3 days after Christmas, I tripped and broke my foot which has put me back in the wheelchair the last 6 weeks. In the mean time my hands were starting to shake again uncontrollably, and I'm having a hard time to eat and help myself. But I feel that there is a light at the end of the tunnel as I will get out of the wheelchair again. I want to ask Henry what are you doing for your shaking hands? My Neurologist is doing everything. Tomorrow I'm going for acupuncture for the shaking hands and hopefully it will help me. Let's all stay strong! We will all get better soon. If anyone else has shaking problems, please let me know. I am desperate to find something to help me.
Thank you,
Maria
Maria, are you taking prednisone? My hands would shake something awful when I was on prednisone. I even bought some adult bibs because eating was such a challenge and I made such a mess.
Thank you for your reply, Daisy. No, I haven't used prednisone for over two years. My doctor changed my thyroid medication and we thought that might be the reason for the trembling hands. How are your hands now? What treatment finally worked for you?
Thank you,
Maria
Daisy said:
Maria, are you taking prednisone? My hands would shake something awful when I was on prednisone. I even bought some adult bibs because eating was such a challenge and I made such a mess.
When I stopped prednisone the trembling stopped. Now I take celcept and the IVIG.
I am so glad for all of your advice. Hopefully we can figure out what works best for each of us. I personally am trying to stay positive and not let this get me down as hard as it is. Being able to come here and 'talk' with others who are going through the same things makes me sure of at least 1 thing, Im not losing my mind, what little I have left...LOL This disease and all that comes with it s not what I had in mind for the rest of my life as Im sure neither did any of you. Giving up bits and pieces of who I used to be has been 1of the hardest things for me to get used to. Like with the treadmill thing. The love and support from everyone here is such a blessing. Thank you to each and everyone for being the wonderful people you are.
~Blessings, Char
Try a therapy pool. Many nursing homes have them and for a small fee they allow people with special needs to use them during certain hours of the day. You may need a note from your Dr. The pools are about 4ft. deep and have all of the floats, weights etc. that you need. I have found that it is the only exercise I can do. The warm water is an added bonus.
I'm sorry you are having such a hard time. Good luck, I hope this information helps.