Fibromyalgia Action UK
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EXERCISE

i have learned over the years that exercise is very important if you have fibromyalgia. i will initially hurt more but it builds my stamina, and improves my mood!!

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I joined a gym 2 weeks ago, have been building up how much I exercise I do each time I go. After I finish I sit in the spa hot tub to ease any pain. Yes, it is hurting right now but my docotor and gym manager say it should get easier in time. Any spare time I had, I spent sleeping as I am so very tired but I'm trying to change that and force myself to exercise, I get such a sense of achievement once I've been to the gym :-)

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I've started yoga and pilates, its slightly sorer after but I've felt a difference even over the last few weeks that I've been going :)

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That's great in theory & I totally agree that I should be doing the same.However I can barely get out of my chair & have to use crutches and a mobility scooter so I don't think I'll be at the gym any time soon.

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Hi, I've been told that by my rheumatologist and doctor and now by occ health, we bought a good exercise bike which I go on daily for 2 min, haven't been on for a week or two, I've had a couple of good days and could almost say I was pain free and didn't have fibro, but been on it yesterday and bang can bearly move today!!!!!!! So my good few days are over:-), however I will continue using it as its exersice and now I have high cholesterol. Of 7.7 so I really do have to do exercise if I don't want heart attack in ten years!!!!!!! So yes I agree preserver and I think we'll benefit long term xxxxx

Regards nicki xxxx

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I find doing a 'Health Walk', is of great benefit to me. We have a local group, with one walk's leader who is an amazing 83! Who has also has a knee replacement. You can go at your own pace, as there is a back marker too, so no chance of losing the pack. I join the group once a week, rain or shine & although I am generally wacked when we finish....I know it keeping me from seizing, and the social side of it is wonderful. If you're able to do a bit of exercise, the rewards are truly great.

Look out for Health Walk groups in your area.....they're free & fun for all.

With every good wish to my fellow sufferers,

Annette (Fibro-hater).

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i agree that exercise is important and i am under a physio and i have exercises to do at home that he has shown me and given me a 3 page leaflef. i cannot do them all at the moment but i mmust persevere.

belinda

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When I was told I had fibro I could barely get out of a chair,Rheumatolgist told me to do low impact aerobics, I went to a class every week and slowly progressed through the pain barrier but have never looked back!!. I hurt if I do and hurt if I dont........ So I do but know my limits.Stay positive.x

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I find walking the dog, yoga and swimming all help me -- gentle exercise is good and getting out in the fresh air lifts the spirits :) Having a positive attitude is also a great benefit and finding enjoyment in the simple things in life. Accepting that this is your "new life" is the most difficult part of living with FM. Be strong!! xxx

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I do Karate twice a week. I always sleep better after a class and then the day after I feel a lot better. When I force myself to go for a walk at the weekends it hurts (specially the front of my thigh) but I feel a lot better after it.

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I do yoga, it can leave me a bit sore for a day or so. I think walking is an underestimated form of exercise and I try to walk 2 or 3 times a week for twenty to thirty minutes. I am dreading the winter weather as it's not easy to get out. I have a WII fit so do a bit of exercise on that.

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I walk my dogs,go to the gym and have been learning how to horse ride through an equine therapy centre,it's all on hold at the mo as I have a nasty case of tendenitis but I have found exercise really helpful and makes a difference to my mood as well.

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Oh I horse ride too, it's great! x

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When I was diagnosed I could hardly walk, shook every time I went anywhere due to lack of stamina after spending months in bed or on the sofa. I went swimming, gentle excercise and walking in the pool. Was hell at first, but I definitely think it gave me my life back as I now am more mobile and my body feels stronger. I don't go anymore, but it kick started me going out and doing more.

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I have been swimming and i still hurt from last tuesday but I will continue as I need to lose some weight...I makes me very tired..

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just had my o.t. round and decided to give ty chi,or yoga a go, but bit worried if esa or disability find out, and then think im fit fir work. anyone else had any problems with this ?

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I took up exercise for a rheumatic condition in 1988 so when I found I had fibro I just continued though it was more effort, but I definitely think it is worth it for me. I often think I kept fibro at bay by exercising regularly and I would have had the disease earlier but for my exercise routine - gym, walking, cycling, yoga, pilates.

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I kept up doing my yoga stretches over the last few years, and it paid off, because I am so flexible now. When the fibro really kicked in, I was afraid about losing the ability to move, so in spite of any minor discomfort, I persevered. Sometimes, even though everything might hurt going through a simple routine of stretching can really help. I also take my little dog for a walk, but depending on how I feel it's either short or long one. The main thing is to not push yourself too far or over-exert yourself, otherwise it defeats the object. I used to go to a gym, but now I do my main routine either in the morning, or before I go to bed. During the day I will constantly stretch my neck, arms & shoulders, hands and ankles, quite often without thinking about it. You have to do whatever your able to cope with.

Wish you well!

Sharon xx

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I have chronic fatigue syndrome alongside the fibro. Fibro is better with exercise and CFS is about exercise intolerance...

I use a wii fit and do the balance exercises..... and do Qigong (following the free online video on taichi18.com) and do the 18 movements of Shibashi

Walking along a river or the sea is pretty good too.

I have to work within pacing and let my mitochondria recover properly, otherwise I crash......

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I have CFS as well as Fibro. I wish I could exercise, a long walk or a nice swim would be great. But in reality I will stick with gentle stretches and getting plenty of sleep and resting because some things are just beyond me and I have learned to look after my spoons.

Julie xx

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its really interesting reading all these comments. i have never been on a fibro site before!! i too started off with M.E symptoms 11 years ago, after having glandular fever. it was about 4 years ago that i was told i had fibro. so wether i have both or was misdiagnosed, i dont know. but lots of the symptoms are the same, and whatever it is, i dont like it! my husband calls me complex! so many tests, and examinations that all come back "NORMAL" yet days when i feel like someone pulled my plug out, took my brain, kicked me all over, and threw something in my eyes!! to name but a few symptoms.

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I couldn't work out why, when i lived in the USA, I would start on a fitness regime gradually building it up and then about a week into it (just walking around the block) I would be knocked out for several days. I was 30 then. Now at 59 and with a proper diagnosis of fibro, I have to budget my energy. Stretches good. Walking not good. Zumba gold great whilst I was doing it plus the day after and then..... completely wiped for about 2 weeks ..... drained and exhausted. Today I am in excruciating pain in my arms..... wrists and thighs.... don't you just lurve.... how it moves around the body!? I know suger makes it worse and right now I have become addicted since having 2 lots of surgery in the last year...... ergh.....

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Exercise will pay off, just take it slow and steady at first. I now swim 32 lenghts, 3 times a week and I go to slimming world. Since christmas I have lost one and a half stones and now back into a size 12 jeans. Yes it does hurt, but I keep telling myself how much fitter I now am, and even without exercise I hurt, so I might as well be fit and happy and hurt xxx I also take Bach Flower Remedies which really do help improve my mood and I think they have helped me get off my bottom, stop feeling sorry for myself and take control of my life again xxx

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I feel better when exercising but have had a bad bout lately but I am ready as i got my daughter to set up the wii fit to balance and will pace myself to return to tai chi soon. I struggle with walking pain in my ankles and legs so dr suggested exercise in water. I will check out the tai chi online as well thanks for the tip above. lesley x

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I totally agree that gentle exercise is extremely beneficial in managing all aspects of Fibromyalgia,the key is finding what works best for us as individuals, walking with my dogs is my exercise out in the fresh air yes some days are harder than others but i find my pain and stiffness is much worse when i am still for too long i need to keep moving! Della xxx

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I was still able to walk and did walk a bit every day if I could possibly do it back 4 yrs ago, I also was planning to join a Tai Chi class which I'd waited for 2 yrs to move to a community centre building owith bus access from where I live.Then I had my income support taken away after the doctor questioned me about how I got to the appointment (I'd walked from the train station with a severe migraine, and was slumping in the chair during the appointment. I could hardly keep my head up and my eyes open.) She wrote on the form that I 'avoided eye contact' when asked questions, implying that I was lying. She also wrote that I walk in the park for 10 min a day, which was not what I told her at all. I lost so much money through late payment charges and bank charges while waiting for a tribunal hearing. Between that assessment and the letter telling me I'd lost my income support, I started the Tai Chi class and loved it. I'd gone a few times and felt it was really helping, but after I lost the benefit and had my income support cut to half while awaiting appeal, I had to quit the Tai Chi class which I could not pay for anymore.

The tribunal went well, and I got back pay and everything, but I'd by then missed out on the Tai Chi class and no other beginner courses being offered in my area. I was so disappointed. However, having been judged as not incapacitated by that ATOS doctor, and seeing all the stuff on TV about reporting people for benefits fraud, I determined that no one would ever see or hear me refer to exercising again, if I had to go through all that for trying to keep myself in a moderate state of health. I was really struggling then, but nothing like I am now! anyway,I determined that from then on I'd only walk to the end of my development and back on an occasional basis, and would go up and down stairs in my building at nights, lest I have some idiot report me for being a benefits fraudster. 3 yrs later, and I finally had got to the point where I could not go up and down the stairs, and having loads of difficulty with my daily living I live alone and can't even bathe myself for days on end, can't do housecleaning, and struggle to wash the dishes.

I was persuaded to apply for DLA, and I was turned down, partially because I live alone and they think I am 'coping', as I don't have a carer. I thought the tribunal would go well, after I had such a good experience with the one 4 yrs ago, but this time they put me through hell! I was treated like a fraudster by the judges! It was positively demoralizing. They questioned me for a very long time even though I was unable to walk and shaking and slumped over in the chair and having trouble speaking at times. To my surprise, I received a letter two days later saying I'd been awarded the lowest rate of mobility and care and back payments, and it was set for two more years.

Now, I'm still afraid to exercise, after what I've been put through. If I've been awarded benefits on the basis that I have mobility problems and need help with even some of my basic care, what happens when they learn I am exercising??? It may well be a moot point, because I can't even do the hoovering, I'm in so much pain and suffering so much weakness. I get up and do things whenever I feel able, but most of the time, just lie or sit propped up by pillows. I also blank out and go into a semi-conscious electrically shocked feeling state of sort of paralysis where I can't move at all, no matter how much I try to tell my body to move.

I have tried and tried to tell my GP and describe this to her. She thinks she understands chronic pain because her husband evidently has chronic pain after some type of surgery; but she doesn't seem to understand what I am telling her. When I describe this, she says I need to tell my body to move by starting with my hand or foot and working up, etc. This is not the point. I literally feel like my brain is disconnected from my body and I'm in a state of shock. Also, when I told her that I am lying in bed in this state or in extreme pain to the point that I think I can't take anymore and just blank out, she just said in a rather stern way, "You can't lie in bed for hours" You have to get up and move every half hour!" I felt shut down at that point, like nothing I said was getting through. I'm on pregabalin at the highest dose. I asked her for morphine and she refused on the basis that she has had other patients who were prescribed it and had bad results. She didn't say what but that they couldn't continue with it and then were addicted.

I don't know what to do. How can you exercise without losing your benefits or being reported by others who see you and think you are a fraud? How can you exercise if you can't even wash your dishes or hoover a small part of your floor? If you exercise and you are living alone with no carer, who's going to do the work that you can't do while recovering from your exercise? I find that I only have a small amount of energy at a time. For example I can stand at the sink leaning with most of my weight against the lower cupboards and my leg bent to hold me up... this lasts about 3 min. and then I have to sit down and rest for at least half an hour before i can have another go.

I think I may have CFS along with the Fibro (which has been diagnosed by a Rheumatologist), but no one seems interested in testing me for this or confirming whether I do have CFS. Would it make a difference in the way I am perceived by the GP and the NHS, if I did have a diagnosis of CFS?

I need to get some answers about this. I know the post was long, but maybe someone can help.

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I try to walk every day even if it's not very far, and it does make you feel better afterwards, sometimes i'm in so much pain that I think I can't possible walk anywhere but I push myself and it's worth it in the end.

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