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diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
So i have been trying to do just a few stretching exercises.

Please can any tell me if their bodies react like mine?

So if i stretch my arms out in front of me and flex my hand upwards to stretch the whole area i have severe pain through my hand wrist forearm elbow up to my shoulders.

If i lay on my side and put one leg out and flex my foot up then down to stretch through my foot ankle calf and knees the pain is so severe it makes me yelp ...worse than getting cramp through all of it.

Its the same through my whole body...I'm so confused guys....is it like this for any of you?

I have so much trouble walking and doing anything much because the pain builds so rapidly and is even worse in my joints.

Plus chronic fatigue....you know where you feel like your full of cement all the time no energy and effort to concentrate.

I've been trying for 3 years to get some mobility back by changing around what i do but what i can do is so limited both pain and strength wise.

I've tried a few squats or lunges with terrible set backs and yoga positions are not a possibility for me. I'm not overweight and used to be so fit!

I'm 10 years into fibro and don't want to stay this bad....situational depression has set in.
 
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I feel so bad for you Diamond. When I stretch I do feel pain but it’s not “bad” pain like something is wrong, and certainly is not severe. I may be wrong but you were unsuccessful with physio therapy?
 
Diamond, Did you watch the new video's I put up. One is about knee pain but he includes other exercises as well. I have not really gotten into any exercise program because I do so much walking and bending at work that by the time I get home all I want to do is sleep. I think any exercise you pick should be geared toward anything that does not cause you a lot of pain. Cause then your going to spend rest of day trying to ease that pain. Not much fun.
 
Hello diamond

I've run some tests to compare with your stretching pain:

With my arm outstretched and wrist flexed it hurts me a lot. Painful enough for me to stop doing it.

I compared that move to arm outstretched in front like a punch but this time with all arm muscles engaged (tensed up) then following with a hand flex was less painful. Could you try that and tell me if you get any improvement?

I found a similar thing with side leg lift. Engaging all muscles first then focussing on a very controlled gentle up and down (only about a foot high) motion it was very different to the pain without tensing the muscles first. Interesting!

I think your question has actually helped me so thanks. Great that you are trying to continue with gentle stretches. Good luck. It's no wonder that depression takes hold when life is so difficult for you and your fibro is so severe. Rest assured you are a treasure and we all care about you very much.....feel the love.
 
Although i couldn't work 1sweed i used to bend and stretch a lot just keeping my house nice and doing light chores in the garden...all the stretching hurt but not so much i couldn't push through like all of us have to.....because i soo loved to be busy and I'm know it helped overall to keep my body in condition.

I always had to be sensible and work within limitations but i used to push those limits sometimes too for the sheer enjoyment and satisfaction of achieving....and although no certainty if i had overdone it recovered again enough to continue my routines.

Now standing on my legs is severe every day as are pretty much all movements I'm at such a loss.

Yes dear 1sweed i watched your video as soon as i saw the post...i guess i need someone professional to look at me again...as im the weirdo who could get in the bath with no knee pain and get out barely able to weight bear from the movement through my knees and legs of getting myself out of the bath....to point of limping.

Showers now!

So i have always had to limit certain movements to protect certain areas that could not tolerate twisting around....just in the past gentle walking making sure no leg twisting...but i cant do that often now.

Hi Peaceandquiet..im not sure i did what you kindly suggested correctly....i made a fist but aside from my hand hurting a little less the rest hurt the same.

I actually flexed my leg forward while laying on my side rather than a leg raise...hope that makes sense? Ive just tried again upon waking and i cant even do it! ....restricted movement and extreme pain through my calves and thighs into my hips.

Im running out of ideas because being still often hurts so bad and activity makes it worse..yet i know 100% that inactivity is sooo bad for me.

My legs hurt so much just to get around the house until like you say 1 sweed i end up resting with my pile of hot water bottles disillusioned bored and getting more depressed.

So its not a case of stop before you hurt badly i hurt severely the minute i stand up and often most of the night too my body is on fire with burning throbbing pain.

I wasn't put on this earth to do nothing ...i understand pacing and resting....it worked for me for years but this is a whole new level of disability.

Thanks for your support medicmurphy..yes the physio sent me away saying she couldn't help me because she had never seen a body react like it.

I so appreciate just you guys bothering to reply...very tearful right now after years of this decline and feeling so trapped and useless to myself and my family.
 
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oh my that post was long...sorry.
 
I feel your effort and determination.

I can't do much upon waking, either so maybe wait a little while first.

Will keep thinking. x
 
I hope my negativity doesn't bring any one else down.....sorry if my post is a bit whiny or repetitive in my explanations.
 
diamond, Thank you for sharing. I was wondering have you ever tried water therapy. One of our older members had talked about how nothing else was working and then she decided to go to a local indoor pool where she was given easy exercises in warm water and over time it helped to improve her muscle issues. Might be worth checking into.

I realize just what your going through as I was in that sorry state about six years ago. My legs did not function right, weakness in hips and bad balance problems with falling and severe brain fog. I was very depressed and finally sought the help of a counselor to straighten out my worthless feelings. I also went for massage therapy and tried new indoor hobbies to take my mind off my pain. I am much better now which shows there is hope that yours will turn around as well.

Just know we are always here for you and that any of us who care are only a message away. Your an important member of this forum and we all care about your well-being. We are all here to help each other get through the rough spots in life. :)
 
I would do the pool therapy 1sweed but i have vulvodynia and Interstitial cystitis which is basically daily vaginal and bladder urethra pain and sore burning skin.

I have to only use pure water and no scented products and am not able to go into chlorinated water or even use epsom salts. ...even water can burn some days as crazy as that sounds. I know im one hot mess!

Its like i cant explore one treatment for one part of me because it will flare another...i would love to get into a warm pool and move my legs and body around gently.

Perhaps if i win the lottery i could have my own pool built! :)

After Christmas i think i will ring around some massage therapists and explain my situation and see if one will come to the house and maybe start slow and gentle with just a leg or shoulder massage to see of my body tolerates it ok....thanks for giving me some encouragement.

How did you build your muscle strength up 1sweed after being so bad..or were you still quite active even through the worst time...and did you have bad knees and feet too?
 
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I’m so sorry you’re encountering such challenging hurdles Diamond. When I commented earlier about physio therapy I thought I remember you saying awhile ago it didn’t go well with you. You had horrible pain after and the PT didn’t believe you. If this wasn’t you then I apologize and perhaps this is an avenue to explore. My PT treats many patients with Fibro and ME.

Another suggestion, have you thought of acupuncture? Some people swear by it. Massage therapy is a good route as well. Some therapists specialize in Fibro/ME patients.

I really hope you can find something that can help with relief. It is no wonder you feel depressed, especially after you lead an active life. Sending you gentle hugs on a cloud of support and sunshine

I
 
Another idea might be to have your own hot tub, that way you could control the temp and make sure nothing was added to the water. You could do mild exercises that way.

Anyways it took me a long time to recover as some of the problem was my body reacting to the medication as I am allergic to most medications. My body has bad reactions in the form of severe pain and rashes, hives and weakness. I am hyper-sensitive to meds and scented products like lavender and any strong odored product. I have to buy no-scent everything.

But back to your question I did slow easy nature walking and easy stretching exercises laying on my bed. I went swimming in fresh water lakes and always wore a life preserver and flns on my feet. The preserver keeps you above water and with fins on feet it allows a person to float and move forward with just moving your toes or foot. I swam laps using just my feet w/fins to move forward. No muscle strain but it did help my muscle tone.

I avoid stress and just let my self totally relax. I did not attempt to have a perfect household and let others do the chores when I was too fatigued to stand for very long. Avoided air conditioning. I kept warm as much as possible wearing socks to bed and extra blanket at foot of bed. I bought a cotton fiber mattress topper and used it in rotation with a four inch thick foam pad to provide extra cushioning for my body so I could sleep. I tried to eat healthy and have lots of natural fiber foods in my diet.

That's all I can think of for now. The biggest issue is getting a good nights sleep every night and too do that you need to have a very comfortable soft bed. Then work it from there. Hope this helps you some. :)
 
Yes medicmurphy you are absolutely right...that's exactly what happened...i persevered for a few sessions as the physio was focusing on foot knee and shoulder pain but everything would flare up after such minimal level and number of exercises she said it made no sense and the exercises which were very gentle shouldn't be creating such a severe reaction.

An example was doing a few legs raises laying flat on the bed and my knee and all around it would seize up and go from flexible and low pain to high pain and me hobbling.

It was also happening randomly which is why i was sent to the physio in the first place.

Even gentle massage would seize up the muscles around my left shoulder and shoulder blade so by the next day my whole left side was kind of glued together with restricted range of movement as the pain radiated into my ribs breast and down to my waist and down my left arm too.

I found the best thing was to rest it then limit the use of that side of me..using it enough to keep the muscles a little active but not putting too much weight through any of it or any large or repetitive movements ... .luckily i am right handed and could use that arm a bit more before flaring.

That's why i couldn't ever relax and try new things like yoga ...twisting around and putting weight through my joints could create such havoc and swimming was a no go because of the large over head arm movements or even the ones for breast stroke seized up my shoulders and shoulder blades.

LOL i used to be a really good athlete in my younger days running for my county so yes this is quite a downfall and was very confusing.

I know its the same for everyone trying to find the balance between activity and resting....i actually love to exercise and would walk any day over driving somewhere.

I actually gave up driving way back in 2009 specifically because i would get in able to walk and get out after using the pedals and often be struggling to walk...so i chose walking regularly for about 2 miles instead until things declined further in 2014/2015.

Funny 1sweed i have just been looking at hot tubs....now i just need a house extension to put one in!

Thank you for sharing your story of how you improved....it really opens your eyes to hear each persons story in more detail and to give some inspiration...the fin for moving around in the water sounds really helpful.

You too medicmurphy for explaining a while back about how you built up from bed bound to running.

I don't think i will ever be running but i hope maybe something will improve by our UK summer.
 
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I also tried the stretches you mentioned - the ones with the arms is almost impossible for me to do without pain due to my long-lasting frozen shoulder. It hurts to try to lift up my shoulder and takes real effort (my right arm feels like it weighs 15 kilos!) I know you were also suffering from frozen shoulder so it could be something related to do.

Back in my 20s I was obsessed with stretching, loved the feeling of 'good' pain, but then decided that I should do the split (me and my crazy mind!). The stretching that was needed was sooo painful that once I got to do the split (perfectionist nature of mine did not allow me to give up, stupid!), I was like 'I hate stretching'.

Now I have ok days and bad days - sound familiar? :) This fibro can be so mysterious. I might be in a lot of muscle pain but light stretching will feel real good, but on another day I may be feeling quite good, but even my favourite upper back stretch can cause quite a lot of discomfort.

I do know that warming up your body can make things easier. Either through a shower, or by doing some basic cardio movements (walk around at a slow pace - don't forget to put on some great music).

I also wish I could go to a (heated) swimming pool but it is also impossible for me. I don't even own any swimwear, have not for years!

And like you mentioned, I also hate how I've tried almost everything out there, but nothing seems to have helped, or it helps one part only to hurt another. But this new year I really want to start the journey again. From trying the usual meds again to acupuncture, PT, massages (maybe, only maybe), trying different sorts of exercise (tai-chi for example), go back to mindfulness, meditation, and this new meditation form called sophrology. Why not, maybe the second time around my body will love one of these treatments :)
 
BTW vickythecat well done for deciding to try everything again in the New Year. You never know something might make enough improvement to make life that bit better.
 
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