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Fibromyalgia Action UK

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Hello

regthebarber profile image
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Hi Everyone, just introducing myself. I am Reg, 60yr old male. I have had Fibromyalgia about 8 yrs. I have noticed in the last 2 yrs how quickly it has progressed. I think the worst for me is "Restless Leg" it drives me insane. It must be the worst feeling in the world and there is no words to discribe it. People look at me and apart from looking a bit tired they see nothing and think everything is ok. The most anoying thing is seeing someone you have not seen in a while and the first comment is " Your looking well" Aaahh, it drives me nuts. If they could only see the pain I am in and for the last 48 hours I have been pacing the floor because my legs and arms have been twitching stopping me from sleeping due to restless leg. Even the name "Restless Leg" does not sound that bad, if only I could explain the impact it has on my (none existant) life. Well enough moaning,,, just thought I would say Hello.

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regthebarber
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8 Replies
n_raines profile image
n_raines

Hi Reg. Restless leg is blooming awful. Sometimes caffeine can make this worse? Hope you find some relief with it.

Hi Reg. I'm new to HealthUnlocked (joined 3 days ago) and have already learned loads about the state I'm in and how to cope with it! If you haven't yet, it might be worth joining the RLS group too for the support and understanding of what you're going through (not all of them have fibromyalgia on top, but many have multiple problems that nobody would wish on their enemy...). Be kind to yourself - and tell yourself that when people say you look well, they mean it as a compliment (usually?!), whatever it really feels like! ;-)

Tortoise

"It's not my face that's ill." That's a good'un for those who are clearly trying to belittle us 😂👍

pugwash80 profile image
pugwash80

Hope the group is as support to you as it is me Xx

rosewine profile image
rosewine

Welcome Reg. I think the very first sign I had fibro was RLS mine were burning and twitching. I have to say both symptoms appear to have been helped by Pregablin and doing stretching exercises. Freeze gel also seems to work. Some people have said Magnesium oil spray has also helped. You definitely have our sympathy.

I agree that there is nothing worse when we are feeling like rubbish to be told how well we look. It is definitely an invisible illness.x

Been-there done itNo how you feel

Beachcomber53 profile image
Beachcomber53

Hi Reg and welcome to our exclusive club that no one wants to join 😉!

Pregabalin really helped my restless legs but I have to say when I gave up caffeine it made it 10 times worse so I went back to my normal consumption then started on pregabalin and it’s so much better 😏.

I managed to walk my dog today 😊, I was wrapped up to keep draughts off my neck and wearing fingerless grey compression gloves as my osteo arthritis is VERY painful at present. As I was sitting training my dog to be at ease around loud noises I noticed 3 people watching me and obviously commenting on my gloves and scarf as it was a warm day. Instead of being embarrassed I started to think up slogan to put on my gloves: “It’s a fibro thing!”, “Rocks on your Joints = Osteo Arthritis!”, “98% train wreck 2% healthy!”, “Keith Lemon Fanclub”, “what’s your problem? mines fibro” or “JUST ASK ME!” Sometimes it would just be great to explain without all the stupid looks! Hey ho - my slogans did make me chuckle and my dog fell asleep so I enjoyed my walk! When I got home the dog and I slept for 4 hours and I woke up feeling stiff and grumpy but that’s fibro for you 🤨.

Welcome to the group and sorry for the rant 😘

Hawk480 profile image
Hawk480

I take oxycodone for my pain. Only thing that works. It is an opoid. Mine is aspirin fee because of my liver. I also take Lyrica for my diabetic neuropathy pain. Hope this helps.

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