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diamond

Legendary member
Joined
Sep 18, 2015
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1,548
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DX FIBRO
Diagnosis
01/2008
Country
UK
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anywhere
I have been very inactive due to high pain for the past 2 years...so at home all the time.

I am suddenly very worried about the amount of muscle mass i have lost and i was in quite good shape even with fibro prior to this as i walked as much as possible and kept flexible doing my house chores bit by bit and a little light gardening.

I had a good look at my body today and can see its very wobbly and lost all its tone which i know will only increase pain.

Im not over weight only 128lbs but my legs especially the left seize up very quickly with walking..some days they do more some days very little.

Do you think its possible in your 50's to rebuild muscle with just walking as i already know i cant do weights or aerobics of any sort.

Has anyone else got this problem and successfully rebuild and strengthened legs knees and glutes.....my feet also hurt very much every day.
 
Walking will help but not build muscle. Have you considered body weight exersizes? Squats, lunges, etc without weights. Planks are great for core strength. What about a bicycle? It doesn't stress the joints, you can vary your speed, but still is getting you active. Swimming is great. Uses every muscle but little stress.

I do think it's possible to rebuild muscle, in fact it is recommended for post menopausal women to do some sort of exersizes, especially weight bearing to combat bone loss. It also helps in weight control that occurs after menopause, helps with hormonal symptoms and emotionally as well. Weight bearing doesn't have to involve weights. It can involve our own body weight.

For myself I run, row, bike and weight train. I understand you can not do aerobics or weights but adjustments can be made. I'm coming off a winter long flare. Each day is different. I am trying to focus long term. Perhaps look for and purchase a workout DVD that demonstrates different levels of fitness. It is very commendable that you want to improve your health through some level of physical exersize. You WILL benefit. As time progresses you may be surprised what you can achieve.


A large exersize ball is great. Not only does it provide support but enables a body weight workout. Each ball comes with a workout sheet.
 
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I trained as an aerobics instructor in my early 20s and our motto back then was 'It is never too late to get fit if you start now'. So you can definitely build muscle and get fit at any age really. It does become more challenging for sure. But it is so important to know that the most important muscle in your body is your heart. Having lean arms, visible toned abs etc. is surely great, but the heart is what one should really focus on, especially when someone is suffering from chronic illness.

So start slow and build up from there. Walking is the best exercise ever. Try to maintain a steady walk for at least 12 minutes. Ideally of course it is a minimum 20-30 minutes, but with fibro I also can't always achieve that either. 15 minutes is more realistic with me. I also love my exercise band and my water bottles. I fill them up and do all kinds of upper-body exercises with them while sitting down, watching TV. I take my time with these, and at the end I drink the bottle of water as a reward!!!!

I love trying out different exercise videos on youtube. There are so many out there! You can find videos of exercising from a chair, or on a mat. Or exercises targeted for pain release. I also love yoga, it relaxed both my body and mind.

Look at it as a fun activity and not as an 'must-do exercise'. Moving is good for us, endorphins that are created make us feel positive. Know your limits, embrace them, and work around them for a healthier body and mind :)
 
thanks for your tips im a little more worried as my flare is ongoing..exercise like cycling or swimming would be way beyond my capability.. If i rake a few leaves in the garden my shoulders and back and arms are so painful i can hardly move for several days....the sort of pain that would make you cry.

I feel my fibro is somehow different.. i used to walk for about an hour max now its painful to stand and get around. This change came suddenly so not from lack of moving...just lack of moving as a consequence means my muscles on top are now weaker which of course doesnt help.

I will keep trying..Medicmurphy thanks for your tips but really running and weights would be off limits. I cant even get down on the floor as if i put my weight through my knees in an awkward position to get up or down they would then hurt so much..like pulled tendons and grinding pain through the joints.

Its a very scary place to start to exercise from as i have tried with disasterous results of being worse for weeks with anything other than gentle walking and getting up and down from a dining chair to try and keep my glutes working.

I think some of us are unlucky and seem to get fibo to a different level..but i appreciate and will keep trying
 
@Diamond. Please don't think I am suggesting the weights and running to you. I mentioned this as I surfaced from a bed found flare to now attempting these. It's not without a struggle however, and I hurt, believe me. It was only to give you hope as perhaps a day may come you may also achieve this at some level, given how fickle Fibro can be. I'm well aware that at any time I can crash and burn. I try not to focus on this. I also understand there are different degrees of Fibro and CF.

I agree with vickythecat about light weights while sitting. Please try the large ball I suggested.

Walking is great. It will help tone your muscles but not "build" on them. Back in 1994 I had serious back surgery following an accident that impaired my right leg. It was walking that greatly helped me return to my previous health. I've never underestimated the power of walking since. What is so frustrating with Fibro is we are fatigued, tired, and sore which "land-locks" us and the result of being sedentary breeds fatigue and pain. Moving greatly helps but we can be stuck in a vortex.

Try setting a goal of walking 5 minutes in one direction then walk back. As time moves forward slowly increase your time. Many exersize moves can also be done sitting. Bands are great. Apply them to your legs. Or use with your arms. PT's use these with patients recovering from accidents or strokes. Stretching as well is awesome for keeping our joints mobile and aiding our ability to move in a full range. It is so important to keep ourselves moving in some fashion. If we don't we increase our chances of secondary health risks such as developing blood clots. Please don't get discouraged. As with any begining of an exersize program it can be daunting. As you state, you were very active prior to the exacerbation of your Fibro. Your biggest battle will be your memory of this activity and where it wants to take you. Set small but achievable goals, then go from there. Everyday is a new day and new opportunity to be successful.
 
Thanks medicmurphy for the encouragement. Do you mind me asking after your long flare do you feel you are taking a risk of over doing with any exercise. If that happens does your body recover to something more tolerable eventually?

I had my own regime for years but my 'other normal' is a distant memory and i can hurt so much so quickly im not sure how much is too much....i dont know the difference anymore as i always stopped before severe pain...now i can be in severe pain doing nothing..my mind has lost its bearings with a feeling i am going to do irreparable damage.

So how do you use the leg and arm bands in the gentlest way possible to start?

I will google the ball as im not familiar with this..how does it help.

LOL all i can think of is the bouncy orange balls children bounced around on in the 1970's space hoppers i think!

Again thanks for the support..i really have to fight hard now as i must not let my muscles deteriorate any more. I will be happy to tone them but will this make them any stronger or just stop further deterioration?
 
Hi Diamond - I'm with you in this question. I really struggle with this. I can still walk about half an hour at a time. But my upper body has gone to pot. My neck pain is so bad, that any amount of stetching starts a flare up. So I stopped. But now I have very little mobility on my neck and almost no muscle tone in my arms. I can't figure out how to stretch my neck without starting migraines (I've even tried the gentlest stretch under hot water followed by muscle rub) or how to work out my arms without freaking out my neck and shoulders. I'm trying a new physiotherapist tomorrow to see if he has any new insight for me. I'll let you know if he says anything helpful.
 
HI Diamond.

My flare lasted pretty much the whole of winter. Like you my muscle tone deteriorated quite a bit. I started with light weights and rowing on my rowing machine. I have a mini gym in my basement. I pretty much have to force myself because I do battle constant fatigue. To climb stairs my legs literally burn. Because I have a past history of running I wanted to get back to that knowing I wld be much slower. I started with the mindset of alternating walking and running. I have a walking path around my home so I utilized that. I've graduated to trails now. Again, I hear you that this is something you can't do. On the flip side, I didn't think I could either as I just spent months in bed. This teaches me that we may be able to do more than we think we can.....to whatever degree that may be.

The ball I'm talking about can be purchased in any fitness store such as Sport Chek. Google it on line. It's blown/inflated. The user can lie it, supporting the lower back and perform crunches, or light weight flies etc. The ball comes with an insert with pictures and different skills to perform. Nothing too challenging or difficult. The ball is designed to isolate muscle groups without placing little stress on the body.

Regarding the bands... Always sit or stand with good posture. The band can be placed either around the ankles or knees. Direct you leg laterally for the reps you want, then behind, then forward. Only direct your leg as far as you comfortably can without arching your back. Proper posture is key. The movement can be very minimal. You should feel your thigh muscle working. These bands can be used for upper body as well for stretching. Again, Google or look at YouTube for ideas. Remember, always use proper posture. Learn to differentiate between the Fibro pain, the "good" pain that comes with working out and the "bad" pain, when we over exert ourself. Yes, toning your muscles will make them stronger, and you will also be strengthening your bones.

I admit I can over-do it. I am slowly learning my limits and my Dr always reminds me not to over-do it. She knows I have an active workout history. Like you I am in my 50's, 59 to be exact, turning 60 end of August. Because I look after myself, thankfully I don't look it. I guess I'd rather hurt by working out than hurt while living a sedentary life. The key is to know when to push it and when not to. I've hit the wall many times setting myself back but, by doing this I am learning where my limits are. Another point you mentioned that I too worried about is the "irreparable damage". Fibro isn't terminal and our muscles have no literal damage to them. We feel pain and fatigue, but our bodies still can move and work. Albeit not the same as pre Fibro, but, we can still move. The key is to find out how much we can that is unique to us. A few years ago I complained to my Dr how my stamina wasn't improving regardless of my workouts. I could do a boot camp, by far surpassing others 20 years younger than me but struggle to get out of my car after driving home from class. What's with that????!!! My Dr reminded me that my stamina will most likely never return, so I had to adjust my thinking and approach. So, I do what I can with the knowledge and goal of trimming up, (I'm 118 lbs), feeling I'm accomplishing something, enjoying the positive endorphins exersize gives, my man is encouraged by my efforts, (I'm sure he must get discouraged seeing me sit or lie down everyday), and I'm reaching goals I never thought I could. I have a 10k I'm training for in August with my sister. My mindset is I will run, walk, and complete it. My husband will be waiting at the finish line. I want to see his smile as I cross holding my sisters hand.

In conclusion I encourage you to test your limits. Start out slow but do SOMETHING. Push any discouragement out of your mind. If you walk for a total of 5 minutes then stretch, conclude that you walked 5 minutes more than you did before!!! Celebrate your successes. I will be here celebrating with you.
 
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I think this is a great thread. Each of us has our own unique circumstances and limitations. What we all share is pain, weakness and fatigue. Some individuals are worse off than others. What this thread can serve as, is to encourage each of us to continue to fight back at this condition. One way is through some sort of physical activity. I feel we can each achieve this in some way. Why I conclude this is by looking at bed bound patients such as comatose patients, or para/quadrapalegics, muscular dystrophy, stroke, MS, etc, etc. Each of these cases require and receive some sort of physical activity because the alternative worsens their health and places them at risk for poor circulation hence blood clots, blood pressure issues, depression and so on. Post surgery patients are required to walk then exersize asap to avoid complications. What teaches me about these patients subsets us the importance of movement and how this applies to me.

I applauded each and everyone of you for always looking at ways to help yourself. I hope this thread will serve as encouragement. Some may be able to do more than others but let's not be discouraged by it. Instead, let's cheer each other on for the hard efforts made. Let's share what works for us. Who knows, maybe it will work for others.
 
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Hi Diamond,
Yes, I think it is possible to get back your muscle strength from walking if you start very slow as the others have suggested and do it with purpose and good posture. Five or ten minutes at a time then one day you will feel like going a bit further. I, too, had a long period of inactivity due to grief and stress.....years of it. When I finally got off the bed and made myself move, it took about three weeks to start feeling the muscle tone coming back. After that it got a bit easier and it wasn't such a difficult thing to do. I think the agoraphobia was the worst but bit by bit I got fit again and got out and faced the world.
Sadly, now I'm back on the bed all fat and wobbly.
Thanks everyone for your tips and inspiration. I will be following this nice little chat and just maybe I will go for a stroll....see how I go.
 
Thanks medicmurphy..yes my muscles burn even in bed and on standing and my joints like my knees hips and feet are excrutiating when i get up in the mornings...i have walked just round the small area where i live and my legs seized so much i end up limping to get home having to keep stopping...so a walk that should take 5 or 10 minutes took me 30 minutes and then i had to get off my legs and feet for most of the rest of the day...hobbling.

Then the next week or more the worst pain caused by this walk were stuck in my knees and hips and feet with aching and burning in the muscles.

IT took days for this to improve enough for me to get round the house to do essentials like make an easy meal or up stair to the bathroom.

i have other issues and while i know overnight stiffness is our norm again mine is now more extreme than it ever was when i could sleep in relative comfort 70% of the time.

So for example whatever part of my body i lay on in bed when i wake i am literally in agony cant hardly straighten my arm elbows or knees if they get pressure while sleeping ...another example of this is if i sleep with my head sideways on the pillow i wake with earache and pain in the cartilage outside my ear and temples and neck the side i sleep on.

SO i sleep on my back but then my bottom calves throb and upper back and shoulder blades and neck burn and stab from sleeping on them!

So the next day starts with all this pain along with jaw pain to point its hard to talk and often interstitial cystitis and vaginal burning and pelvic pain ..so you see the picture i have multiple problems at severe end everyday..it is totally exhausting. sometimes i am weeing 20 times a day and up in the night over and over.

I notice when my hands lay on the bed sheets any fingers touching the bed clothes feels like they have thorns stuck in them and infection in the nail bed area and the fingers are rigid ..which lasts well into the next day and comes back every night.

There is no infection its like im so over sensitized to extreme my body mimics it in every part of me. Walking flares up the interstitial cystitis and vaginal pain as does sitting ..so just the movement stimulates the groin area and sets it all nuts like its on fire most days.

Believe me i have tried harder than i could ever describe to fight back often to end up in bed again with ice and hot water bottles and cocodamol longing to get the pain back down to tolerable.

I do wonder how many have so many add on symptoms as i have also lost my voice for the last 9 weeks as my throat and jaw muscles seem to be under attack from the pain and weakness of fibro.

Its so hard to stay motivated when everything you do causes more than problems with say just the legs when walking.

But i am determined to try and thank you and also Marvis thanks for chipping in...i totally hear you.I also notice stretching flares the pain much more than expected in many parts of me and then i have to keep still to try and get it manageable again.

I can talk with some experience as i had fibro pretty bad for 7 years before this downturn but like i said stretching and walking and using my body was always possible to a much greater degree.

Anyway any more comments tips or shared experiences would be appreciated.

Good Luck medicmurphy reaching your goals and for you determination.

May i ask did your whole body flare during the winter and did you just wake up one day and felt an improvement?
 
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Diamond,

My heart hurts for you. I completely understand as I deal with a lot of what you describe. I don't think to the degree you suffer though. Yes, my whole body hurt, from the souls of my feet, palms of my hands and my scalp. I suffered with migraines, nausea, ear ringing, skin sensitivity, and vision problems. I spent the majority of my day in bed because the fatigue was ginormous. This is when I was diagnosed with CF. I started on Cymbalta, right around the time our weather improved with Spring time. I've been on it about 4 months now. I honestly feel it helped me get over the hump. Not with pain control but mentally. I felt more energized and motivated. However, my symptoms for the most part continue to be overwhelming and my Dr bumped me up to 60mg. The side affects continue to cause nausea and headaches so I thought I would get back with my workouts and see how that helps. And it has. At this time I'm taking Cymbalta 30 mg once a day with an Oxy at bedtime. My nights continue to be unfortunate. Pain, overall body nerve excitement that keeps me awake until 3-4 in the morning. This is no different than when I was sedentary. Fibro continues to be a pain in the a$$. Like you I have other issues. Big ones being chronic Bronchitis and pernicious anemia. I have other annoying and painful issues but no need to elaborate. More person stuff. In conclusion, the flare lift was not sudden or overnight. Felt like it though after a very long fall and winter. I do hope that you can find a way to increase activity in whatever way you can. If anything, it can help you feel much better about yourself. When I have my rough times I don't feel too positive about myself. Fibro robs us of so much.
 
I think I should add Diamond, seeking your Dr advise on what he/she suggests how you should approach increased activity. You poor girl and your extremely challenging struggles. My heart breaks for you. Sending warm hugs from Cochrane Alberta Canada
 
So sweet medicmurphy and thoughtful..like you i have migraines if not full blown its always threatening waiting to pounce throughout the day with eye pain and nausea yep i have that too. lol and skin sensitivity and tinnitus ( ringing ears) and digestive issues .and its also the weakness/fatigue that keeps me trapped.i think we came from the same mold!

These add ons were not part of my fibro at the start and all grew year on year. Im so sorry you also have other health issues and in my view are a real warrior!

I am going to keep trying with the walking..the weather here is pretty good now so like you i walk up and down my drive and round the garden and will try 5 minutes up the road and back to start.

I hope my post doesnt sound too much like a pity party..really i am just looking for hope and other peoples success stories and tips can help when things seem so hopeless.

After months then years motivation is so hard to keep up and pre this downturn i always seemed to be highly motivated and got up early ... optimistic it would be a good fibro day and I had a routine and a light hearted ness that's vanished more and more.

So i know what you mean about not feeling good about yourself..and im sure your hubby appreciates your efforts. I hope he knows what a lucky man he is!

Let us know how you are doing with you exercise regime now and again. hugs
 
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I posted a video of a low impact exercise on this forum with full enthusiasm a week ago. I was feeling quite good and had been doing that video everyday for almost 2 weeks. I was so proud, and at the same time I couldn't help think that my fibro was maybe getting better....and then it happened. Last week Friday, a huge flare up. Exhaustion and extreme pain all over. I could not get my body to do that video or anything similar even for just 5 minutes. Nothing.

It, yet again, showed how insidious fibro can be. Just as you think, life is getting better, there is hope, it turns 180 degrees and even laying in bed hurts.

But my motto has always been 'Anything is better than nothing', so it is so important to listen to our bodies and do those little exercises whenever we can.

And yes, there will be days, weeks and maybe even months when we can barely do the minimum we need to do in life. On those days, let's just appreciate every tiny thing we can do (even getting out of bed deserves a loud applause on some days, if you ask me!), and not focus on what we cannot do. It is hard, very hard, but it is so important to keep positive.
 
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