swings and roundabouts

All your fibromyalgia experiences, questions and answers.

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swings and roundabouts

Postby JDWench » Tue Mar 04, 2014 10:52 am

Yesterday I was suffering almost unbearable widespread pain and exhaustion after only three hours sleep, even my fingertips hurt! But I made it to college and then on to work where my customers who know about my condition said I should go home. One of the ladies told me of a hospital in Bath that her friend went to and now is "cured" of fibromyalgia, she's going to send me the name so I'll let you know if I get an appointment! The only hilarious thing to come out of it is me calling an umbrella an envelope and my eye my nose. After the horror that was yesterday I've woken up with my usual aching joints (usually due to jhs) but I feel so much better! I'm not saying it'll last all day but compared to how bad I felt yesterday this is fantastic. Is this the nature of the illness? One day I feel like I've been hit by a bus, the next I'm practically walking on air.
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Re: swings and roundabouts

Postby SchroedingersCat » Tue Mar 04, 2014 11:07 am

Sounds about right. Do keep us posted about this cure.
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Re: swings and roundabouts

Postby suesweeney02@aol.com » Tue Mar 04, 2014 11:44 am

Please keep all of us updated with that news. Im having a bad time at the moment, so much pain im so depressed....
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Re: swings and roundabouts

Postby Shazmy » Tue Mar 04, 2014 12:18 pm

I would love to know if you find out any information on the hospital in Bath ? I am quite new to this as well,even though i have had problems for years.I was told that the things i had wrong with me were due to my weight,but sadly they weren`t :( I had a Gastric Sleeve done 18 months ago and have lost 6 stone :-D I still have some weight to loose,but feel worse now than i did when i was bigger :cry: I vary from day to day,like most of us. It took me until 3pm yesterday to get up and dressed and go and do some shopping,i was just so drained it was un-believable :cry: So i hope your not having a bad day today,im better than yesterday :-) Please add me on Facebook,it would be nice to have friends that know what i am going through :-) I wait for your response :-) Thanx Sharon Myers xx
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Re: swings and roundabouts

Postby Librarychick » Tue Mar 04, 2014 12:30 pm

Hiya. I too have been living in hell for a while now. It was the pain Clinic that mentioned Bath to me. It wasn't suggested as a cure but as somewhere to go for respite. At the time I was really bad an d everything was getting on top of me. I didn't go but am posting this because I didn't want you getting your hopes up that this place cures fibromyalgia. My understanding is that it is a bit like a detox place for people on drugs,or alcohol in the sense that there are people who will help you learn to live with fibro and that you will be able to rest and recuperate. My specialist who told me said there isn't a cure.

Sorry I can't help.
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Re: swings and roundabouts

Postby FluppyPuffy » Tue Mar 04, 2014 1:33 pm

There is the Royal National Hospital For Rheumatic Diseases in Bath which has a long standing reputation for these kinds of conditions. If you clicky on the linky, it will take you to their site. From what I understand, it can take a long time to be seen there if they accept your referral from your GP/specialist.

As for the lady who said
JDWench wrote:her friend went to and now is "cured" of fibromyalgia

Please keep your mind as open as possible about such claims as, so far, there isn't a cure for FM, the best we can do is manage the condition. Some are able to pretty much lead a normal life due to finding the right cocktail of meds/supplements/therapies/treatments for them, and for a few, the condition can go into a remission/dormant~like state, but there is always a possibility that things could start flaring up again at any point along the way.

Having things fluctuating day~by~day, even hour~by~hour and minute~by~minute, is the nature of the beast where FM is concerned, which is why it is so difficult to manage. I've had a few days where all the motorway traffic in the country has been driving over me, last night was extremely disturbed, to the point where I would have sold my soul and the doglet for the 3 hrs sleep you had the other night, yet this morning I have got up, soaked in the bath for a while, and things are a little more manageable.
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Re: swings and roundabouts

Postby atko64 » Tue Mar 04, 2014 2:46 pm

Sounds about right to me.
Yesterday I was in so much pain and so exhausted I could not move off the sofa. Even getting to the toilet left me out of breath with exhaustion and pain. It's such a bizarre illness. I take each day as it comes.
I had to give up work because of the CFS/ Fibro My line of work was just was just impossible to do with all the symptoms ie Brain fog etc.
Please keep us posted about the hospital in Bath. I think I can say we are all so desperate for a cure.
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Re: swings and roundabouts

Postby painprincess1 » Tue Mar 04, 2014 4:34 pm

Yes yes and yes again I have offen gone to bed on my hand and knees lay there with legs and arms a dead weight to tired to even move have a crappy nights sleep and get up feeling better the next day.as pp said there is no cure maybe this lady is having a good few weeks or months but I'd be surprised if it don't come back one day.and I'm sure if they could cure it most dr would no if it, still I'd love nothing more then to be proved wrong xx
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Re: swings and roundabouts

Postby FluppyPuffy » Tue Mar 04, 2014 4:40 pm

painprincess1 wrote:as pp said there is no cure maybe this lady is having a good few weeks or months but I'd be surprised if it don't come back one day.and I'm sure if they could cure it most dr would no if it, still I'd love nothing more then to be proved wrong xx

Me too. Rather than going :too-upset: :scream-1: :pull-hair: :face-slap: at someone for telling me that what I had said was wrong, I'd given them :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: and ask them where I needed to go for it :penguin: :penguin: :penguin: :penguin: :penguin:
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Re: swings and roundabouts

Postby JDWench » Tue Mar 04, 2014 11:38 pm

I don't believe for a second that she was cured, all the lady said was she went and hasn't mentioned any symptoms since. Maybe they taught her amazing coping skills?
I know I certainly have to look as happy and well as possible even if I feel that I may collapse at any moment. Either way it's nice to know research is continuing. I hope everyone has support around them when they need it. My Mum had been wonderful but I lie to my boyfriend when it's really bad because he's bored of my moaning and doesn't know how to deal with it. He's put up with it for the last few years and now all the symptoms have a name I think he believes I'm using it as an excuse. He gets frustrated when I have low mood and really don't feel able to go out because we've always been very sociable.
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Re: swings and roundabouts

Postby zappa20 » Wed Mar 05, 2014 3:33 am

Perhaps the lady saying she was cured was a slight misnomer then. But I'm pretty sure if you asked her if not being 'technically cured' made a difference to her she'd say No. As long as her symptoms aren't affecting her and it has no impact on her life I'm sure she's not too bothered whether she's cured or not.

Fibromyalgia is a name given to a condition representing a group of common symptoms. Just as the name cold is given to a range of viruses which cause the same. There's no cure for the common cold virus either. Seems to me saying fibro is 'incurable' has no real meaning or relevance to anyone who has it. But the fluctuating symptoms, variabliltiy and coping mechanisms are relevant.
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Re: swings and roundabouts

Postby MikH-D » Wed Mar 05, 2014 7:40 am

Strangely enough I heard someone with fb/me cured, her started from a trigger of glandeur fever as most me people I know do, they took her tonsils out 10 years down the line and apparently feels 1000 x better


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Re: swings and roundabouts

Postby zappa20 » Thu Mar 06, 2014 4:33 am

Just thinking the woman mentioned in original post might have been the young lady with severe fibro symptoms who tried a course in a private pain clinic paid for by NHS funding . Think the first 2 weeks were residential, the weekly follow up appoinments. After a few months to a year, she was free of sympotms and in training to climb Killimanjaro. Albeit I think she was from Wales.

Was on a TV documentary aired last year. The programme questioned GP's tedancy as a quick fix , to over prescribe strong painkillers in chronic pain conditons and also questioned their effectiveness in controlling pain.

I've been free of all fibro symptoms for over 5 years now, so it is defintiely possible.
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Re: swings and roundabouts

Postby denys » Fri Mar 07, 2014 12:44 am

Its also possible that people who say they are 'cured' of FM have been wrongly diagnosed in the first place, my old GP told me that FM almost became fashionable and it was being used as a diagnosis far too quickly and too often.

As Zappa has said it is possible to have a 'remission' of symptoms and be able to manage the condition very successfully for periods of time whether it be days, months or years.

Others manage to work full time and bring up a family together with running a home, whilst others become more disabled with the condition daily. What I'm trying to say is we are all different and FM affects us all in varying degrees, so if this lady has found a way to manage better or found that she is now symptom free, then long may it last and I hope many more people who genuinely have the correct diagnosis follow in her footsteps :-D :-D :-D
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