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Fibromyalgia Action UK

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Fibrofog profile image
13 Replies

Hi everyone

How are you all doing?

Me,my legs are awful,lately they just ache all the time,and by the afternoon it's really bad,so my legs keep fidgeting, which means I can't totally relax.

I should've gone to the pain clinic last Wednesday. But when I got up,I felt awful,and as its Barts I had to get too,there was no way I could make it.

I was never the type of person who missed hospital appointments. That's all changed now!

Fibromyalagia is nasty. Yes it isn't life threatening, but it is life changing!

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Fibrofog profile image
Fibrofog
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13 Replies
Dizzytwo profile image
Dizzytwo

Hi, sorry you couldnt make your appointment. Yes I'm afraid chronic illness no matter what it maybe is life changing for all that suffer sadly.

Hope you could manage to rearrange your appointment 🤞

Arymretep profile image
Arymretep

Hi, I have awful leg pains too, I also have restless legs syndrome which makes it worse, I find magnesium spray helps. Hope you get another appointment soon.

Fibrofog profile image
Fibrofog in reply toArymretep

Don't think I will. As this isn't the first time I have missed an appointment (I did phone and cancel)The other time I couldn't get there, was because there was a train strike! Xx

Painny profile image
Painny

I’m no exception to leg and feet pain 🥲🥲🥲 however, where there is no quality of life I consider it as a gradual killer

I hope you get in touch with your GP or call 111 NHS, they are good advising you on the phone xx

CheetieCat profile image
CheetieCat

Hi, I can totally empathise, my leg pain is awful too, restless legs, foot pain & really tight muscles, especially calf muscles. I've resorted to the rather fetching support stockings or flight socks 🤮 they do help and I've actually got to the point I really don't care how anything looks anymore, whereas before I wouldn't have been seen dead in them! (Quite easy to hide them anyway, just keep your fingers crossed you don't end up in hospital for some reason 🫣😳)

I use my vibration plate most days, weighted blanket, magnesium lotion & sprays & epsom salts in the bath when I can manage one. Hope you find something that helps you soon x

Arymretep profile image
Arymretep in reply toCheetieCat

I found compression socks great for my leg pain, but un fortunately had to stop wearing them because of bad circulation , the same with my weighted blanket 👎

CheetieCat profile image
CheetieCat in reply toArymretep

Oh that's a shame 🫤 It's such a vicious circle at times isn't it? Find something that helps but affects something else you never even thought of 😩😩

Yassytina profile image
YassytinaFMA UK Volunteer

Yes fibro does change things as I have had too reschedule, appointments we don’t always know how we are going too feel on the morning do we , so that’s why I always say too people see how it is on the day and most close family/friends are pretty good at understanding now. Achy legs is uncomfortable, I try aim too soak mine in the bath at nite , or when I’m pacing get them up on the settee/bed. I try and give my calf muscles a rub with ibuprofen gel . Hope you get too your next appointment take care x

smiile profile image
smiile

I agree, fibro is nasty and yes, it’s so difficult to know how you are going to feel from day to day and knowing you have appointments, work, plans just adds to the stress. Could physio help? I’m finally getting physio for foot pain, my regular awful foot pain plus plantar fasciitis. My calves are tight with lots of myofascial TPs , ouch!

It’s never ending…..

Take care x

Masil profile image
Masil

Hi ff yes it's a nasty illness for sure you say you have to get to the appointments yourself ? Was it at a hospital as surely you could get hospital transport to pick you up ?? I get really bad tight cramp like sensations and was perscriped diazepam as a muscle relaxant and it does work really well most of the time but as always with this illness some days nothing helps and they are so painful I carnt even touch them , and I'm facing alot of stress at the moment with my primary career my husband being so ill aswell as he's not been well for quite some time and now we moved and got a new doctor we are finally getting answers he's had 2 mild heart attacks been diagnosed with prediabetes and now also rheumatoid arthritis in his spine left shoulder all his left ribs and his neck which is so painful for him and so we're struggling to cope with day to day life and hopefully social services are being involved to try and help make things easier for both of us so of course that makes my symptoms react and are worse then they have been for a while but we just try and laugh at it and get on with things the best we can I did manage to buy the book by bette brown but you dont look sickthat was suggested to us by someone on here and its a real eye opener so I would suggest any 1 that reads this post try and get itvas it explains alot and is for family and friends to read to help them understand the complexity of fibro and I found alot of things I didn't know and it answered alot of questions about other symptoms I've been having so i do recommend people to get hold of it and read it as its written by a fibro sufferer and she did alot of research and it has alot of information that you don't really get told about by your doctor I found my copy on amazon for £5.99 so it's very reasonably priced but I hope you get to your next appointment stay strong And keep us updated please on how your doing

Fibrofog profile image
Fibrofog in reply toMasil

Thank you. And sorry to hear about your husband. Sending lots of love

I have the same problem and recently have been to physiotherapist about this issue and other and she said she found it hard to believe that I am in constant pain just sounds like all other health professionals .

CheetieCat profile image
CheetieCat in reply to

I totally understand why they find it so hard to believe, because for the most part we "function", we put our game face on and do our utmost to appear "well" & usually on very little sleep.

Most people cannot imagine living with the amount of pain & lack of sleep that we do every day nevermind working, driving, walking, laughing & talking (even though it's sometimes gibberish Lol) therefore they cannot believe that we do!

Maybe it's our own fault that we constantly get "but you don't look sick!" or maybe it's just that they only ever see us with our game face on? 🤷 Who knows??

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