I am considering to use a wheelchair when I am not able to walk. This all new to me and I would like to know that I am not the only one out here that's has this illness.
Dealing with fibromyalgia: I am... - Fibromyalgia Acti...
Dealing with fibromyalgia
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jellio114
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Hi jellio114
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:
I am aware that many members on the forum use wheelchairs (both electric and manual), some use disabled scooters and trikes or walkers and zimmers. So please do not feel that you are the only one and alone in this my friend.
Fibro affects everyone differently, and of course, differently at different times! There never appears to be a norm with it? There is also the health and safety factor? If you cannot walk and attempt to do something then it is potentially not safe? Therefore using aids can help tremendously with this.
If you wanted to be sure that a wheelchair is for you, then you could try a short term loan scheme from the ''British Red Cross,'' as then you could get to try one out prior to buying one?
I have pasted you a link to the ''British Red Cross'' cache on this issue below:
British Red Cross - Short-term wheelchair loans:
redcross.org.uk/About-us/Ad...
I want to sincerely wish you all the best of luck, and please take care of yourself.
All mopes and dreams for you
Ken
Thank you very much but unfortunately I live in the United State and I came across your forum trying to find out about this illness I am having a lot of problems and no one seems to understand me because I don't look like I am sick or that I need help. I hope I can anticipate and get a better understanding with people that have the same illness.
Hi jellio, you will get lots of help on here. I use a wheelchair now, I didn't want to at first but I see it as a luxury now as I just sit and other half pushes lol. But somehow i'm still very tired after being out. Good luck
I sincerely apologise my friend as I did not realise you were in US. Quite often Fibro is referred as an invisible illness as it is difficult to get across to folk how we feel!
If you pop onto our mother site (from the link I gave you) you will find some printable sheets to give to people that tell them about Fibro.
Good luck my friend
Ken
We all suffer from not being understood so please don't feel alone in that . Also don't let anyone make you feel bad , it's not your fault and it's such a lonely illness at times . Keep your chin up and talk to us on here because we really do understand . 😇
Hi Jello
Welcome. In US there is National Fibromyalgia Assoc. Also check out meet ups in your area. You register on line for Meet ups in categories you want. Chronic pain/FMS is a good one to search. Although I live in UK I visited USA this year so did the research. Enjoy!
Ken that's great advice and very caring too . 😇
Thank you that is genuinely appreciated x 
Well it's true you help us all where needed .😇 Hope you are coping with pain levels etc. X
Thank you, I am not too bad today as I have taken it easy. I sincerely hope that you have had a wonderful day my friend x
That's nice your feelings well. It's not to bad of a day for me as long as don't get up too much just trying to stay warm as possible, my body can't take the cool weather we are having, Jewel
Well that's good Ken glad your day has been not too bad pain wise . Myself well on last Wednesday I stood on an apple and my ankle which I had been having a better few days with. Went into a really bad flare up which is bad right now . No sleep and have had all pain stuff I can for now . On the plus side the apple tree is now down . So I will no longer hurt my ankles , it wasn't taken down because I hurt myself it was being done anyway . Hope you get a little sleep . X😇
I am so genuinely sorry to read that you hurt your ankle my friend and I sincerely hope that it is no the mend now. Please take care of yourself x
Really good question, I did exactly the same thing , I asked the experts on here a few years back , only I bought a scooter, big mistake for me , I am now waiting to take ownership of a NHS poupwerchair , mid wheel drive as I live in a very hilly and montanous reagion of the country , I wish I had never bought scooter although I had great fun on it for a summer , the driving position did not help my shoulder joints ,
So go for it my friend !
Chris xxx
Thanks you, I think I will!
I've been using a scooter since December last year. I got it to be able to get the dog out for a meaningful distance. Good purchase and I'm quite expert on it now. My walking has reduced drastically as in terms of distance and pace. I feel increasingly vulnerable but try to walk a little with dog every other day or so just to keep mobile. I've also got a rollator which allows me to sit but that's more awkward with pooch. I've been contemplating getting a wheelchair for months to be proactive. That is, my shoulders and arms are very achy and quite weak. I want to practice self propelling but need the space to do this privately. I know I'll feel very self conscious (as I have with every piece of equipment I've needed to get used to). It's also the most symbolic piece of kit too.
I was referred by social services to NHS for power chair if that helps you ring your local council and ask for adult SS ,explain your circumstance, I couldn't get out at all last winter for the best part of 6 months .good luck
I use a wheelchair to go round shops or when I visit places. Find that I have a lot less pain the next day if I use one.
I have had a scooter for over 12 months now and has been a godsend as I cant walk far, our local shops etc are too far away for me. I recently hired a power chair for my holiday in June. It was brilliant! I couldn't take my scooter in my cabin so the chair was the answer. It gave me my independence otherwise I would have been unable to go ashore, enjoy my holiday.
. I too was reluctant, hesitant to start using my walking stick, then my scooter. I felt embarrassed using them. But then thought if I don't then I'm going to be housebound which I was becoming because it was easier to stay in, wether it be because of the pain I was in or lethargy. I decided to push myself. To anyone feeling the same, Please try, please just try once You will find it isn't as bad as you think. X
I use a wheelchair for shopping and going to shopping malls. If I have to walk far enough that I know it will cripple me I use it.
Hi. I borrowed one from British Red Cross 3 weeks ago after a flare up. Been on holiday this last week and it has allowed me to get out and about with my son and husband taking turns to push me. Otherwise don't think I would have got out of hotel grounds. Certainly been worth the trial and now considering purchasing one. Bit embarrassed at first but you just have to get over that and get on with life.😊
I agree with the embarrassed bit.I used to working in a care home for the disabled and never thought of that.I'm having co-ordination problems and have just bought a second hand one off someone locally on eBay. Went out with my husband first time on Friday. Didn't use my local shop this first time as didn't want anyone I knew to see me. Was awful for experience having hubby attach the shopping trolley in front. He knocked something off the above shelf just missing my head.I always look at the clothes and he steered me well clear if them too.I think will take some getting used to but as another said it keeps you safe.I found people very courteous as I too always give way to wheelchair users but I didn't like the height issue of looking up all the time..ended up with bad neck.would love a n electric one with just lever control
Valid comments above. I will definitely get a wheelchair sooner rather than later because I like to ready and prepared. It's not so much about feeling embarrassed as the fact that it'll represent how much I've deteriorated. I don't venture out at all really apart from getting the dog out. For sure a wheelchair would enable me to venture forth more.
You are not alone, if you need to use a wheelchair for mobility do so xx
I use a wheelchair and mobility scooter to get around. It makes the difference between doing something or not. I also take my wheelchair with me when we fly anywhere.
At the grand old age of 49, this was not part of my life plan. However, my occupational therapist made a very valid point. She said why waste valuable energy trying to walk, ending up tired and in pain. Instead save that energy for enjoying the destination. It really struck a chord with me.
It does take some getting used to. It is the only time my wife and I have a bit of a bicker. I am stubborn and want to self propel all of the time but sometimes my body has other ideas so I give in. My wife has had two hernia ops so I don't want her to hurt herself pushing me.
I have gone from being 6'3" tall with the ability to see over crowds to being in the chair and disappearing among the crowd. It can be quite intimidating and frustrating. However, most people are very kind and considerate when we are out and about. More so with the chair than the mobility scooter. We got stuck going up a kerb at an airport in Italy. This kind man appeared out of nowhere, rescued us and then disappeared again with a wave and a smile.
Do not let using a wheelchair stop you from doing things. There are positives. For example, we go to lots of shows and live music events. I am always guaranteed a comfortable seat with legroom! My wife who is my carer often gets a complimentary ticket as she is there to help. A lot of venues do this.
A few tips for you
Wheelchairs do not like beaches or sand in general
Thick carpet is another thing. You will get stuck / take ages / end up with arms like a weightlifter
If you need to get up and stretch your legs, wait for the looks of amazement and cries of "it's a miracle!" Always makes me chuckle.
Always plan ahead for any places that you are visiting. Check out accessibility, locations of lifts etc.
Wheelchairs do not get to go on escalators!
Best wishes,
Dave
Sniffer8 in reply to
Hi Dave, enjoyed reading your posting. I'm 57 and never thought I'd be like this. Been using my scooter for some 9 months now and it's been an excellent purchase. I do get some looks though which I think is people thinking I'm too young to be on a scooter and/or too lazy to walk the dog! I expect a wheelchair is the absolute symbol of disability so will on the whole get a more favourable reaction?
in reply to Sniffer8
Hi Sniffer8,
Thank you for your reply.
It is my experience that people do tend to react more kindly to a wheelchair user than someone on a mobility scooter. Maybe it is about symbolism.
On some days I just don't have the energy to self propel. Also, if we visit a big shopping centre the distance is too great.
For me, it is important to listen to your body and do what you need to do to get you through the day.
Best wishes,
Dave
I am warey of going down this route of mobility- unless you can get an electric version (and there won,t be many who can afford one nor have the space to store one) your arms. shoulders, neck and back muscles will be used excessively? which to me means further suffering. Can I ask the people who have been forced into this mode is it just because of fibro leg weakness? Have you not been offered and continued physio or hydrotherapies to help build up those muscles? I,ve stuck with hydro for 8 of 14 years after steroid injections had to stop. I,m on the fence here what to do..
woopcushen in reply to
my problems go beyond fibro. thats why i have a scooter and wheelchair, my wheelchair is electric i use it indoors on the days when my legs just wont hold me up. as for the scooter been using one for years. i had a car accident, had severe whiplash in the back and nerve damage, cant walk more than a few feet now. if it wasnt for the pain and weakness i would probably push myself to walk
in reply to woopcushen
totally different kettle of fish for your needs to use a wheelchair my friend I am more curious about fibro sufferers resorting to a chair and wondering why the system has not helped them keep mobile (or some have not helped themselves)
woopcushen in reply to
im sure its the fatigue that stops people from exercising and then end up needing a wheelchair etc. its a very debilatating illness and for some its worse than for others. no one is the same. so its not really fair to clump everyone into one box and say well why didnt you keep mobile
in reply to woopcushen
Not wishing to do so my friend-just curious to find out how far fibro/cfs pushes peoples mobility to this decision. I too have cfs with my fibro and calcium crystal disease which is debilitating as NO oral medication will kill this pain- I have a mild steroid injected into both shoulder joints to make arm mobility easier, I can,t see how I could benefit from any form of scooter as I fear it would excaberbate upper body. I am also considering a G Tech bike but need to get a bit more muscle power back in tired legs first.. good wishes to you.
11caroline29 in reply to
Hi caz-54. The wheelchair route is not one I have taken lightly. I have had Fibromyalgia for 9 years and 2 years ago also diagnosed with Polymyalgia Giant Cell Arteritis and Diabetes. I have been on steroids over the 2 years which have left my legs like jelly and feel very unsteady on my feet. I also suffer from great fatigue which all accumulates to difficulty in walking any distance. I have paid for private physio and asked GP for Hydrotherapy but still waiting on that one! I would like to be more independent again as at 51 I am too young to be housebound so seriously thinking of getting motorised wheelchair or scooter so I don't need to rely on my husband or son all the time. I am only a beginner as just had the wheelchair for 3 weeks now but it has changed my ability to get out in the evening for a few hours on holiday instead of retreating to bed.
Sniffer8 in reply to
I've got a degenerative spinal condition which is progressively taking my mobility. I don't think this is attributable in any way to Fibro in my case.
Riedenise in reply to
Caz54, I use my scooter and the chair as I have Rheumatoid arthritis, Osteoarthritis, Sjogrens along with Fibro. As you can imagine having all this going on at the same time causes me great pain and many problems. I have only being diagnosed with all these 3 1/2 years ago, I'm 53 but feel a lot older
in reply to Riedenise
Gosh I bet you do,, I feel a bit "elderly" somedays and I,m 62 soon. I to have OA ??? sjorgrens (still under investigation) and calcium crystal disease that's bad enough if they all flair up at once!
My husband pushes me in a wheelchair the first one I got was cheap from eBay to see how I got on with one, went on holiday to Greece but kept getting punctures and never took a puncture kit as we were new to this it cost a fortune to get it mended so got a new one with puncture free wheels wouldn't be without it now though I do get funny looks when I get out of it to have a little walk round small shops x
Some day's I would like to hav my own wheelchair but my husband thinks I should make more effort but I use the Chairs in hospital & supermarkets😆
seriously ? grrrrrrrrrrr make more effort. that is so unfair. whack his shins with a mallet and say awwwwwwwww walk it off lmao
My husband is the same, when I am bad I can't leave the home because of the pain of trying to walk and also because I feel so concerned that my legs will give way, also how much fatigue it causes after. So I have been housebound for weeks on end and its so depressing. I think if I had a wheelchair I would at least be able to get out for a bit of fresh air. I used to love walking. Now I don't go anywhere except work and that can be a problem as well as even though I drive there and don't have to walk much I often feel like I am walking on stones. My husband is really against me getting one because he thinks it will make me lazy. He wants me to walk when I can and just stay in when I can't. So i just feel confused because I don't know what is best - getting out more or keeping as physically mobile as I can even though that isn't very often really.
in reply to Blueby
My ability to walk some distance is becoming painful but I am continuing with hydro to strengthen my muscles. I don't, shop in supermarkets as I can,t reach things my arms and shoulder are "fibrosed" and I have calcium rystal disease which has lodged in both arm tops making movement limited.
I just wonder if your g.p is offering you any therapies to keep you mobile and alleviate some of your pain because reading the Forum it seems a post code lottery where its offered.
Blueby in reply to
I haven't been offered anything at all for my fibro, I just get certificates when I can't get to work.
Its like they don't even acknowledge it, but they know I have it because recently my employer wanted a report from them about my health and it was listed as one of the things. I have diabetes and also pernicious anaemia and glaucoma as well. But out of all the things I have fibro is the most debilitating.
I think it is a lottery. I live in Medway and NHS are poor in this area. When the rheumatologist diagnosed it he discharged me back into the care of my GP and that was it. I didn't even get a call from my GP to go and see them about it.
Dear Blueby, my husband used the same arguments for me. (I have spinal problems as well asfibro). But I explained to him that my mental wellbeing was very important in how I coped with this condition and particularly the pain and I was much more likely to attempt more exercise if I was feeling encouraged in other areas of life. So in the end he agreed and life has been so different after buying a scooter.My friends and family choose places for us to walk together where they know the paths are suitable and I can move a lot faster than any of them and that gives me time to take photos too. It's so lovely as well to go shopping on my own except that my husband takes me to the shops and then picks me up when I've finished - that's not the food shopping which we share- but means I can go and cloths shop for myself.
I bought a 3 wheeled scooter which is very manouverable in shops, with a D - ring control which, when I position the control shaft so that it almost sits in my lap, is not too wearing on the shoulders and arms. My hubby moans a bir about getting it in and out but when friends ask him if it's too much, he says it's no trouble at all! So I know the moaning is only so that I don't take him too much for granted - poor old man!
I hope you are soon able to persuade you husband, as your sense of wellbeing is so important. Blessings, Judy
Thanks so much for replying Judy, the advice about the scooter is just what I needed really because apart from having to persuade my husband, I also have to choose something suitable for me when the time comes. I am having a flare at the moment and haven't been out the house for 4 days - not even the garden. In fact I just went to the window to look out and fell over a box seat so now my back has a twist in it 
Take care X
i have a scooter and hoist in my car and a wheelchair for indoors. but im seriously thinking about using the wheelchair for when im out as keeping my arms on the handle of the scooter is getting harder and harder on the shoulders. all i can say is va va vroooooooooooooooom and weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee lol ya gotta laugh or youd cry
in reply to woopcushen
I darenot buy a car although I have been looking as I sometimes get cognitive impairment and so I am on shanksies pony, although I,m off the drugs that caused this I still get moments of serious fibro fog and would panic if another motorist got impatient- I,m sure we,ve all met with those drivers!
Hi love I have a powerchair I love it as I would be stuck in house I use it when I go out I still get funny looks did upset me at first and now I think if didnt have my chair I would never come out did start with a wheelchair but got fed up of my partner pushing me felt so guilty and also got my independence back now with my powerchair so anyone who thinking of using a chair go for it best thing that happened to me hugs jill xxx
Hi jellio114 , Welcome to our lovely site!! I too am from the US and found this site by being on the Internet just looking, and I wouldn't change a thing. I would like to say you are not alone as you will see here.Stick around and I'm sure you will learn a lot about this chronic illness as well as do much more. There is someone here 24/7 so you can always have someone to chat with that understands FM.Ive have always been treated with kindness from day one , now I feel right at home!! Take care, hope to see you around. Peck.🐤
When my back surgery didn't work I got myself a mobility scooter. It has given me my life and independence back.
Hi I'm 48 and l am bedbound most of the time and when not bedbound I'm housebound. I've had ME / CFS for over 20 years now & at first I was encouraged to push , push & push myself & just get on with it. Trying this for a couple of years.(I was very Active and athletic)and only getting worse and worse and spending more & more time being bedbound with less & less mobility.I felt I had let everyone down when I physically couldn't do it anymore & the pain was unbearable. I constantly fought to not have disability aids and adaptations in my home as I was embarrassed and ashamed of myself and what my condition has reduced me too,also I was still letting everyone down and couldn't walk let alone try what the DR's were wanting me to do . VERY Very long story cut short,if I knew then what I know now and I could do it all again I would grab with both hands and get everything I could adapted in my home to help me to be more independent for longer & to conserve a wee bit of energy.. This being said I' ve only let things being done in the last 4 years. I couldn't use a wheelchair or scooter as I'm in constant pain and have no energy or power , honestly if I could use a wheelchair now I don't think I could bring myself to use it but I desperately hope you could try it and embrace it.If the medical professionals understood our condition and all it implies i don't think I'd be as I'll as I am now , I'm under no illusions of grandeur this is it for me,not living and not even really getting by day by day .This condition strips us of our life,energy,relationships,energy,indapendence , confidence and even our memories and we're left as a. formal shell of ourselves that we don't even recognize as ourselves.People have to know this is cruel and relentless and the symptoms , pain & mobility are changing umpteen times a day. So, so so hard to explain and to put into words as sometimes i can't string two words together and I constantly forget what I'm trying to say!!! 
I don't think I'll ever be "well" again or even be independent again & this is what I can't come to terms with and this makes our condition worse, you simply cannot win........
Dear Orkney Fudge (what a wonderful name!), I too had CFS for over 11yrs and was very glad that I didn't have the pain but only the exhaustion, and I now have Fibromyalgia, Having come through the CFS a few years ago. I am so sorry that you were badly advised at the beginning because that just makes things much worse in my experience. There are different ways of fighting a chronic condition and sheer determination and willpower in driving your body to do what it can't do seems to make things worse. Other weapons need to be used and taking the road of being kind and supportive of your body's needs is often seen by others as giving in and being selfish. People who haven't experienced what you are going through, very rarely understand. There is a battle to fight and it begins with the battle of your opinion of yourself. You have not let anyone down. You did not choose to be ill and you have done your best to make yourself well but to no avail. You need to congratulate yourself on your good intentions and your stickability. You should feel proud of yourself for trying. The fact that you haven't triumphed yet is only down to the ferocity of the two beasts that you face.
I wonder if it would be helpful to you to think of them as two separate conditions. Perhaps there might be some relief for your pain if the Fibromyalgia is treated separately. And as for the fatigue - I sometimes used to think of it as being in massive debt. I could save a tiny bit of money but if I spent it all, I would never clear the debt. So Better to spend a very little and save a little, though the debt will still feel enormous for a very long time and it will seem an age before the deficit in energy will be cleared - but you know all about being persistent over a long period of time!
The other way I used to think about it, particularly when I was feeling angry about it is imagine buying a very sharp axe with a twofold purpose, firstly to chop up any task I had to do into tiny bits so that I could maybe manage just one bit at a time (or even tinier bits if necessary). And secondly to kill off any implied criticism from others, or any imagined criticism or any self criticism on my part of my conduct or my state of mind. There was plenty of work for the axe to do as far as my own view of myself was concerned but then it is important every so often to attach a flag to the handle of the axe and wave it to congratulate myself on the work I have done to boost my self confidence! Hurrah!! Hurrah!!
Hope that helps, it grieves me too hear you talk about yourself in the way that you do. May the coming days contain many things to encourage you. Judy
I think use of a wheelchair should be seen as a last resort. It's better to keep mobile as much as possible which has certainly been the advice I have been given by a number of neuro surgeons follow each operation I have endured. If the medical advice is overwhelming in favour of using one then follow that advice but Very often I have spoken to people who have used them because it makes life easier and not for any medical or safety benefit.
I agree a wheelchair really should be a last resort but if you need one get it 😃
You are not alone, I would use a wheel chair but my arms hurt too much. I try and go to stores that have electric carts, sometimes I can't even walk to the store entrance so my son gets the cart for me. I also have handicap sign so I can park closest to the entrance. But there are a lot of days that I just can not get out of the house because of so much pain. Oh, and I also use a cane. Have you thought of getting an electric wheel chair or an electric cart?
But no, you are not alone!!! Have a blessed day.
I use my wheelchair as the pain in my hips is horrendous I can move around the house by stopping and starting. We went to Cyprus last year and they rented 3 wheel scooters that the older kids used they looked great but couldn't find them anywhere to buy when we got home, they were not mobility scooters so looked great
Hi I ended up buying a mobility scooter last summer as although I can walk around the house most of the time I have a nerve like pain in my thighs, really painful sometimes like toothache in my legs, if I walk any distance my legs stiffen up like planks and I feel dreadful I often get very hot and weak at the same time. So I got the scooter so that I can get to the shops and it has really helped me to carry on getting out sometimes, I only go when my husband is with me but after an op I was in a wheelchair that he pushed me about in for a couple of weeks and I hated it, I wanted to still be in control which the scooter allows. I still get really tired after being out but at least I can still go out sometimes. I hope you find the best thing to help you as we are all different and it has to do with who we are as individuals as well because although we may share a similar complaint/illness it seems to effect us all differently. x
Hello Everyone,
I am coming to terms with having fibromyalgia I always was so independent going where I wanted to go doing the things I wanted to do now its always a thought of can I hold my pocketbook how many that I can put in my pocketbook are feet and legs going to hurt and my whole body swelling up if I move to fast or will I be able to go work today or tomorrow is it to much stress on my body, how is my body going to react will be able to work a whole day. My job is not to hard I can do this I am only a receptionist all I do is sit answer the phone greet people coming into the store, why is this so hard to do now! Why is my feet and legs hurt so bad when all I do is sit, why is my necking hurting so bad when I have to use a scarf to rap around it to take pressure off so my eyes don't hurt so bad that I have to shut for minutes on and co-workers thinking that I about to fell asleep! And sometimes I wake up and feel like I was in a fight or up all night partying and haven't slept for days. I had to call out of work due to my legs and feet was hurting and the pain medication wasn't working , what will my job think! I always thinking if I get up earlier and pace my self and rest a little in between I can make it to work on time. I tried so many things to try to keep working but it's getting harder and harder to go to work and everyone tells me at work you look like your in a lot of pain and I am but I try not to let it show, I even bought a mirror to watch my facial expression so no one will see! My mouth is hurting and my jaws feel like someone hit me and I keep going back to the doctor and keep saying that's part of the illness, it seems like it getting worse! I have to have a shopping bag now as pocketbook because I can't bear to have anything on my back but I still try carry a pocketbook just to hold my wallet it seems like everything weights a ton, now I had to buy risk band and gloves to keep my hands warm. It's seems like no one understands what I am going through because my outside look like nothing wrong until my body starts hurting and I pass out because of the pain and have to rushed to the emergency room and that has happened or someone is telling you shouldn't take pain medication because you can get addicted, rather take the pain medication than be rushed to the hospital. I don't think I am going to be working soon because of this illness it can be depressing but I don't have time for depression I want to find out a way to fight this and I looking to know more about this illness and what it does to others that's going through the same thing. I don't know what else to do it seems like I finding out more that what my body is going through is because of the illness, I always in pain and some days it's manageable and some days I have to just stay in bed and not move to much and take more medicine.😯
You're definitely not the only one X I too used a wheelchair for the first time in my life. ...its a great help but I did have to swallow my pride as I felt guilty using it as most days I walk okay . ridiculous to worry about others opinions when I am the one in need!
Best wishes X
Why do people have to be so judgmental not all disabilities are visible x
I’m considering it too the pain some days is unbearable but I still want to go out and play with my grandson.... it’s hard but stay strong 💪 x
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