AnonymousDecember 7, 2009 at 5:06 am
Grr – I’m hitting a wall and I’m frustrated. Before I got CIDP I had (at least) three slipped disks, lower and middle back and my neck. For the past 4 years I have had NO trouble with my back despite being so weak I can barely hold myself upright on the couch. NOW that disk in the middle of my back has started acting up and I’m having trouble using my arms again.
I know that my back is curved – it’s a family inheritance for which other members have suffered surgery, braces and so on. I have been able to avoid much treatment in the past because I kept my back strong through exercise. Now that I’m weak and flabby my back is starting to complain about little things like standing up making cookies for the holidays whereas this time last year it did not.
However working to strengthen my muscles makes my CIDP worse – makes me weaker – and thus my back gives out more. Sooooooo… thus the circular logic. Trying to get better makes me worse so I’m frustrated and not sure how to progress. 🙁
Any ideas? :confused:
December 7, 2009 at 7:37 am
Julie, I’m sorry to hear you are going through yet even more health issues as if CIDP weren’t enough.
You might consider a Chiropractor (particularly a neurological chiropractor because you’re dealing with neurological issues AND spinal issues). Neurological Chiropractic requires a certification. The following link will take you to the certification board’s doctor locator web site. [url]http://www.acnb.org/locator/index.php[/url]
My youngest son is a Chiropractor and he’s convinced me of the value of Chiropractic care. He recommended I see a Neurological Chiropractor when I first started experiencing CIDP symptoms and didn’t know what was going on. My Neurological Chiropractor was instrumental in my correct diagnosis and initial care.
Not only did she treat me, but she listened to me, she was very caring, and was an advocate for me. Chiropractic care kept my neural pathways at their peak that aided my healing process.
As you’ve pointed out many times, we’re all unique in how this disease affects us, the issues our bodies face, and in effective treatments. But again this is just another thing to consider.
I’m sorry that baking your Christmas cookies was so hard (even sorrier that I didn’t get to eat some 🙁 myself (lol)).
Thanks for sharing (we care) … May God give you wisdom, healing, strength and peace.
AnonymousDecember 7, 2009 at 12:18 pm
I agree with Gary regarding checking out a good chiropractor.
Otherwise in the strengthening category, I hove found my rebounding trampoline a wonderful thing to have. Many days I just stand on it and bounce gently. Over time I have more days when I can move my arms without losing my balance, and days that I can jump a bit too.
I work hard to be thankful for any movement I get each day. I’m especially when I can ski! All slow or weak days are appreciated, if I can still ski.
If there is something that you especially enjoy, setting a rest and restore time to have the energy to do what you love, is a worthy trade.
I hope you can find balance and find ways to build strength and practice balance without getting totally exhausted. It’s a trick to develop and practice listening to our bodies with respect and love.
AnonymousDecember 7, 2009 at 1:58 pm
Brilliant idea… this is why I came to you all. I have never considered a chiropractor because in all honesty my first slipped disk was caused by a poorly trained chiropractor and thus I developed an instant distrust of the profession on my very first visit to one. Now that I am many years older I think I can drop that prejudice and give them another shot. I think that might just do the trick so thank you very much for your suggestion and advice! The closest neuro chiro is nearly 50 miles away so it’s not practical to do often as my husband has to take time off work and drive me but a visit or two may help me get on the right track again.
Unfortunately I do listen to my body and I know it’s telling me “do something or I’m going to snap your back right in half” and I’ve been here often enough to know that I can’t mess around with it or I’ll be flat on my back crying my eyes out just in time for Christmas. At least I’ve been here before so I know what to do and to expect – you are right it’s a bummer to add this on top of CIDP but how many of us really only have to deal with one problem at a time? It’s just part of life and learning to live gracefully despite the bumps and potholes along the way, or perhaps because of them depending on your perspective. 😉
The trampoline sounds like a whole lot of fun and then a whole lot of pain when I landed on the floor every other step… and I’m laughing at the visual I just gave myself… No I think I’ll wait on that a bit until I can just stand up without falling over but something similar can be done standing on a pillow so I thank you for the idea. (I’m still laughing visualizing myself tumbling to the floor…)
OK I don’t think I’m going to ever eat cookies again – my nurse and I are doing this marathon bake off and today during treatment we made something like 10 batches of 4 kinds of cookies – I hate math but I’m guessing something like 1600 cookies of various sizes. Granted 4 batches were Haystacks which require basically no effort but I have to say this was the funnest treatment I’ve ever had. 😀 Of course he actually did most of the work… I got to sit on the couch with the cookie gun and press out butter cookies – how hard is that? lol I’m going to gain so much weight my back will surely crumple. :p But they will be out the door soon enough – I’m only keeping a couple for my husband and the rest are heading out the door as soon as I can manage the deliveries. Whew!
Thanks again for the advice ya’ll I appreciate the hope you have given me.
AnonymousDecember 7, 2009 at 8:18 pm
I’m sort of into a very gentle theraband round of exercises and balance discs for obvious reasons…just to keep going. Of all the things that have NOT bothered me it’s the back! I’ve damaged muscles/tendons since I was a teenager. Working on developing your front core muscles takes stress off the spine and the back muscles which are likely working overtime with lots of things! There are a lot of low stress/impact exercises out there that can help build compensating strengths that can offset further pain and/or damages…..
I think it’s Duke university that has an exercise program for back issues that is to try and avoid surgery. I believe it’s been very successful for the way it integrates exercise tasks into daily living as well.
I’ll see if I can find that resource… give me a little time, tho.
I sure hope that you’re not getting to that ‘UH-OH!’ stage yet tho, that is the worst of back pains!
For the meantime? Alternate heat[ideally moist heat] with ice and a ‘break in-between mite be the best you can do for now. No more than 15-20 minutes of heat or cold on any spot at any time! Otherwise it doesn’t work at all! This type of thing is NOT more is better.
AnonymousDecember 8, 2009 at 3:22 am
I have not done this, so cannot personally attest to it, but people talk about the value of sitting on those execise balls to strengthen core muscles and balance and that this can help the back. I have been reluctant to try it because I am sure I would take a tumble, but it makes a lot of sense and I plan to try. The reason to say this is that it seems to me that one needs the back muscles to be stronger. As you say this is really hard to do when exercise is so easily overdone in this condition. It you have the patience, try tiny frequent strengthen exercises distributed through the day. It might not make a huge difference, but every little bit might help. At least that is what I keep telling myself.
I also am really careful not to carry anything heavy now knowing that my back is weaker than it used to be and therefore more susceptible to things that will make it hurt. WithHope.
December 8, 2009 at 2:51 pm
You set a great example for all of us with your upbeat attitude, sense of humor and expressions of hope plus showing downright common sense in finding solutions to deal with your challenges.
I’m glad you received some inspiring, helpful and practical advice from some of our great forum members.
Now can I have a cookie? Just kidding. I sincerely hope you find the right help and will recover quickly.
AnonymousDecember 8, 2009 at 7:45 pm
I always sit down at the table to prepare meals, bake, etc as I still find it quite tiring. I usually put the ingredients in a bowl (for cakes, cookies, etc) and then get my son to stir! He usually eats most of them anyway 🙂 – so I tell him (nicely) he has to help me. I also use as little equipment as possible to save on washing up (and energy) afterwards.
I have slipped discs in my neck and a curved spine too. I’m sure that these probs contribute to my pain. I find I am always leaning on my arm to support my head and when I sit down I always have to lean back on the sofa and rest my head as by the end of the day my head feels like it weighs a ton.
It has taken years for me to slowly build up some muscle mass in my legs and arms.
When I did balance classes a couple of years ago I can remember using the balance ball that WithHope mentioned. I couldn’t sit on it at first without feeling I was going to fall off – but with the physio’ keeping a close eye on me – I was soon able to sit and balance on it. I ended up buying one (after my physio showed me what size to buy and some exercises to do at home) and when I remember, I’ll pull it out of my cupboard and sit/balance on it for a short while.
I hope you find some relief soon.
AnonymousDecember 9, 2009 at 4:32 am
I had one of those exercise balls… then my dogs discovered it and despite it being taller than them they had so much fun rolling it around the yard chasing it I couldn’t fuss at them when one of them finally got a big grip on it and it popped. Then they played tug of war with all the little rubber strips until there wasn’t a piece bigger than an inch. As far as I know they are still out there fertilizing the dog pen as they were so ground into the dirt I wasn’t about to get on my hands and knees to pick up all the little pieces. Plus they just thought it was a new game when I tried. It’s probably worth getting a new one because it really did help – I just stopped using it because it took up so much space.
I’ve gotten my back into a better place right now – spent the last 2 days going between lying flat and stretching. I can’t reach where the inflammation is to put hot and ice packs on it – it’s right at that place where if you get an itch between your shoulder blades you just can’t quite reach it to scratch. But hot and cool showers seem to be helping too. Fortunately only one or two sections of my back go out at once – usually my neck and mid-upper back OR my lower back – it’s never been all at once. I hear you about the neck thing Kazza – I still use the neck brace when I ride in the car as my neck just can’t take the constant bobbing. Going out to dinner is always a visual treat too – propping my head on my arm spooning down soup slumped in a chair with my legs twitching. I don’t know how anybody else has any appetite around me. 😮
Katy if there was ever any compliment I ever cared about in my life it is the one you gave me that I give people hope. You have made my day! If I can bring just a sliver of a silver lining to someone then it makes my own life shine brightly.
And everybody can make haystack cookies too – they are SO easy, here is the recipe.
1 package of butterscotch chips
2 cans chow mein noodles
1 can peanuts
melt butterscotch chips in the microwave at 50% power until melted, pour over other ingredients in a huge bowl and mix all together (hands work best). Take two spoons and dump clumps of “haystacks” on waxed paper. In about 20 minutes they will be hard enough to remove and store, or eat. 😀
P.S. Kazza I’m beginning to think we were twins separated at birth – similar back problems too? Wow.
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