Hello friends

i am mostly stuck in bed with internal RSD. the rest of my body is getting very weak. i found a tv show called sit and be fit which is good for upper body..does anyone have routines they do to strengthen your legs in bed. i have a herniated lower disc and it hurts my back to move but i know i have to. i cant get to a pool so its me and some 1 pound weights and stretchy bands.
any suggestions?
what do you do to keep your strength?

thank you
Lori

Hi Lori,

Sorry to hear about your problems. I have just been told today that I have systemic (full body RSD). Always knew deep down that it was but it's really hard to actually hear it from a large group of Doctors as i'm sure you're aware.

I'm mostly stuck in bed right now like you due to pain. I underwent a PT Program 2 years ago for 3 weeks and they had me do lots of exercises that are useful for when in bed. You mentioned that you had 1lb weights, I had to fasten them around my ankles whilst laying and straighten my legs out as much as possible and repeat about 20 times (start off a few times, then build up). I was also told to do this laid on my belly, side etc.

It did help strengthen my muscles quite a lot. I am a lot weaker at the moment so am attending PT sessions to try and help with that.

For my upper body, I do a lot of stretching when possible. Like you however, I have a back condition (herniated discs from childhood) that make it extremely hard and painful to do so. I have weights that I use in my arms and try and stretch them up but it is hard to do so.

I'm sure others will have some suggestions. These are just a few things I have learnt at PT. I do hope you feel better soon.

Alison.

Thank you very much Alison

i have those ankle weights too i can do those exercises you mentioned..well i will try. i cant afford PT too expensive on my insurance plan. i will think of you there doing your stretches while i do mine. a long distance buddy system.
i am very very sorry you have this too. i hate having to mentally calculate my moves..how far to the bathroom, how far to the car. i walk bent over on a walker with wheels...im only 48 and quite a sight to be seen! i try to have a sense of humor about it all. i have had this 4 5 years and each year has left me more bed ridden. i have to build up my strength because i dont want to lose my ability to walk even if it is bent over...at least im still going forward!
blessings my friend and thanks!
Lori

Your welcome Lori, happy to help!

So sorry to hear that things are so rough for you at the moment! I totally understand! I'm nearly 16 and have had RSD since I was 12 years old. Started in my left leg and has since spread full body except for my right leg.

I spent 13 months in a wheelchair after losing coordination in my legs from a nerve block. I had to have the intense PT to learn how to walk again and it was SO hard! I can only walk very very short distances still but I suppose it's better than not being able to walk at all!

It's so hard as none of my friends seem to understand what is wrong and have stopped getting in touch. They were my main support system other than my mum so it's really hard not to hear from them anymore! Guess they got fed up of me not being able to do things that 'normal' teenagers do.

I hope the exercises help you. I have PT next Wednesday so if they suggest any more exercises, I will let you know!

Take care!

Dear Alison

What an amazing young woman you are! Its a pleasure to meet you here and I am so so sorry you have been through all this. I have been sick for 5 years after gallbladder surgery. I lost all my friends too and my house and job. Fortunately a new company gave me a job just as i lost my job and they let me work from home. I sell office supplies over the phone. thats what i did before i got sick. Its hard to keep my energy up but some how God gets me through.

I have twin daughters that are 19, they are away at college. I get very excited when they come home, they lift my spirits. They will be home for Christmas. My hubby of 30 years is my care taker, its hard but hes devoted.

Good look at PT look forward to hearing what you learned. I cant say i know how you feel being a teenager and going through all that you have, I am sure you are mature way beyond your years. I know your Mom must adore you, i can tell you are a great person!

TTYL
Lori

Hi Lori,
After just completing 5 weeks of PT because I am still bedridden with full body rsd I found that walking is great and we must do it to keep moving but it is also very important to continue to build our muscles too. So, I've been doing exercises while lying in bed. Move my legs side to side, heal slides, put a pillow under one knee and try to kick up. And I use my cane to move up and down and side to side too. I can really see the difference in my muscles and my strength after five weeks. Its been so hard to keep up this week with the frigid weather it makes my body just not want to move. I also have a stationary bike that you can use for your feet or hands on a table and it works good and won't put any extra pressure on your bad back. I think they are around $30.00. Years ago I found a book from my chiropractor about exercising in bed and it was well written and even had pictures to show me if I was doing them right or not. Keep on moving!!!
Good luck,
kathy d

Hey kathy d this is reek. How did the procaine IV work for you?