Fibromyalgia Action UK
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Hi

I am newish here. I’m in my 30’s. I live in East Midlands, UK. I have multiple health issues, including severe fibromyalgia. I have most of the various symptoms one gets with fibromyalgia. Medication doesn’t work for me - only taking 5% off the problems. What I find worse about fibromyalgia (apart from the pain) is the fatigue, depression, muscle twitching and inability to loose weight. And I find there’s a lot of ignorance on this disabilities. Because we look normal and push ourselves, most people think we hypochondriacs or we look OK. But in reality and even on a good day, we still feel absolutely crap. I would like to meet other like minded people especially in the central part of East Midlands. Anyone like to talk openly.

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Hi Bluesummer and welcome to our happy little group. It's a club none of us particularly wish to be in. It's a safe place to have a rant, ask for a shoulder to cry on, ask a question - no question too silly because it would probably have been asked or thought about before ;) We also have a laugh and joke and general banter about our lives. There is usually someone around to offer some advice or thoughts on posts although weekends are sometimes a bit quieter than during the week.

Many contributors, including myself, like you cannot tolerate prescription meds. We make do with supplements, hot water bottles, tens machines, chiropractor, massage, gentle exercise,epsom salt baths, pain clinics, meditation and for myself hypnotherapy too.

I agree that we tend to push ourselves and it is difficult to get others to appreciate what it feels like but also families can find it difficult. I experienced this first hand when my other half had 2 heart attacks - it's devastating seeing someone you love suffer and there is nothing you can do about it - I felt totally useless. So having seen it from the other side I now am a little more tolerant of the other half when he "puts his foot in it". I think we have probably all seen someone park in a disabled spot and when they have got out of their car we think "umm they don't look disabled". As we say not all disabilities are visible but it's easy to jump to conclusions I just wish everyone could be more tolerant and be willing to do some research or listen to us without judging. I dream of a decent television documentary covering fibro but I guess I will be waiting a very long time!

Weight wise it is very very difficult but there is hope. I took the bull by the horns last summer and joined slimming world. Have to say very impressed with it. I can't always get there because of the fibro and other health problems I have but to date have managed to lose 3.5 stone. Probably easier for me because I don't take any of the prescription meds which can make us gain a considerable amount of weight.

Muscle twitches are infuriating I get them regularly in the rear end! and hands. I use epsom salts but I am sure others will have some ideas for you too.

It's hardly surprising that many of us suffer depression particularly when we are in so much pain.

I am not midlands but am sure some folk from your area will be along soon for a chat.

Take care

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I totally agree with you. I am from Northamptonshire xx

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Hi, I live in the East Midlands too x

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Thing is I don’t think there is a “good day “ - I think we just have days where it’s not as bad as yesterday and we have to get things done and we learn to cope with whatever thing it throws at you - we are spurred on by nesscessity , Bordem - external pressures , stubbornness and that belief that we don’t want to be seen as ill . I think the issue with others is they don’t see the struggle you have to go through to give them half an hour or so of normality - I had someone moan at me because I didn’t turn up to a one hour meeting - but it was the one hour travel time the walking from station etc and then the reverse (I did tell them in advance I wouldn’t be there) but I was on the phone when they rang.

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You should insist on a pain clinic referral and lidocaine infusion.

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Hi bluesummer17 I am in East Midlands x

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Hi, blue summer,

Just wondering if you have thought about joining a local fibromyalgia support group, where you can meet others in the same situation as you, and share ideas for coping with this condition. I believe there are support groups in Nottingham, Leicester, Daventry, derby, Lincoln, maybe there is one near you? Try "googling" fibromyalgia support groups and the area you live to find out. I also think you can find a list of groups and contacts on fmauk.org. hope this is helpful xxx

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Hi Bluesummer, I too live in the East Midlands. I have fibro, underactive thyroid, + others and I'm pleased to meet someone else living in the same area as me.

As I have underactive thyroid as well as fibro, it is virtually impossible for me to lose weight and I'm convinced I'd be a lot better if I could get rid of this 3.5 stone I've put on!

I get restless legs and that's very annoying, but the worse thing for me, besides the debilitating pain of a flare up, is the exhaustion and tiredness, people just don't understand what it takes to get out for a while, you always have to factor in the travel and walking to get to where you are going, the time you will be there and if it also had any walking and then the walking and travelling back, before you can decide whether you will be able to manage it or not. It isn't just the activity itself, everything has to be factored in. It'd exhaust me just thinking about all that I'd have to do never mind going! 😲

Where abouts in the Midlands are you? I'm in Leicester. Nice to meet you. 😊 Jen.

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