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Original poster

Fibromyalgia sufferers

65 replies

QueenandKingMum · 15/10/2012 18:13

Can you please describe what it is like for you? I have had 6 months of all over joints, muscular, tendon/ligament pain (feel like I have been run over every day). Saw a rheumatologist who declared I didn't have RA and discharged me back to GP. That was July, pain still excruciating and GP had done more blood taken but suggestion Fibro. I am so tired and sore I can't bear it.

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Original poster

QueenandKingMum · 17/10/2012 07:40

Today is a little better, yesterday was a nightmare. Thanks Groove will PM you for advice.

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inaworldofmyown · 17/10/2012 16:37

I've been wondering if I have fibromyalgia. For about a year now I have been in pain and it s gradually getting worse. It started off in my feet and has now spread to my elbows, shoulders, neck, ankles and legs. I have always been active and put it down to the fact that it was normal wear and tear and getting older. In the mornings I am so stiff I hobble around like a little old woman till I loosen up a bit. I am managing to do Zumba twice a week but my body completely seizes up after these sessions. I take painkillers every day but they don't really help that much. I have read up about it but the only places it actually hurts to touch are my elbows. I feel I will be laughed out of the doctor's surgery if I go as I am still managing to do things and look perfectly ok but most of the time I am in constant pain. Any clues?

ellargh · 17/10/2012 17:16

I am a sufferer. I noticed the problem in my early teens but was fobbed off for almost a decade before I got diagnosed two years ago. The diagnosis changed nothing but did give me a sense that I wasn't just lazy and a hypochondriac but that the condition affects so many others and is slowly becoming more recognised. DP struggles with it and sometimes my children do miss out which I feel awful about. I haven't worked in for years properly and every time I get a job outside of the home I'm fired before the end of my probationary period due to it. I was turned down by ESA as I failed their interview as I could walk into the room without assistance and got turned down by DLA so I'm expected to work like this. I have bi polar disorder too so paperwork and official things freak out my anxiety so applying and appealing can be hell depending on the day.

Original poster

QueenandKingMum · 17/10/2012 19:49

I'm not sure inaworld - I think GP is the way forward, no one should be in pain. It could be arthritis? Good for you for attempting Zumba!

ellargh - Poor poor you. There is a poster on this thread who has successfully applied for DLA perhaps PM her? I agree about the label, I feel a lot happier and at peace now that I know what it is. My partner struggled too, and my kids aren't happy but I've had to sit them down and explain. It's so so hard.

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ellargh · 17/10/2012 22:14

I think I will have to, Queen. I can't work although I desperately want to but I need the money from a job iyswim. DLA is so difficult to get for people who's problems are there all of the time let alone people like us where some days we can walk to the bus stop and carry some shopping and then the next we can't get up the stairs without crawling.

Original poster

QueenandKingMum · 20/10/2012 09:27

Dla will be impossible, and I've made the difficult decision to give up the baby I look after as she's going full time with me and I can't do it. Gutted. But until I get ahold if my problem work isn't going to happen. Ive been up an hour and the pain is excruciating already. Back to bed ASAP.

How's everyone?

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KatyMac · 20/10/2012 09:51

Bad day today; lots of pain & cotton wool

i get through the week & collapse at the weekends I think

Original poster

QueenandKingMum · 20/10/2012 10:10

Do you find cold makes it worse? The weather hurts me? My skin feels like it's been sandpapered.

Katy what do you do for pain?

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KatyMac · 20/10/2012 10:33

Co-codamol & hot baths mainly

The weather is odd, extremes (hot or cold) make it worse & do big fluctuations

Original poster

QueenandKingMum · 20/10/2012 11:16

I find that the only thing helping is cocodamol, I hate being dependent on it, I really do.

I love hot baths but it makes me dizzy and very tired. Helps immensely though.

I hate this so much, I had a very very big cry and pity party with my partner last night. I hate it so much.

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Saltire · 20/10/2012 11:27

The weather affects mine, and I am convinced I have reynauds as in the very cold days my finger tips go white and numb.

I also feel cold easily, even on hot days I can feel cold, but then I also get the opposite and can be wandering round in shortsleeves on a frosty day (indoors, not out)

queenandkingmum I think you have made a good choice in giving notice, although it prob doesn't feel like it. One of the reasons I stopped full time childminding was becasue I physically couldn't do it. I had a 3 year old and his 1 year old brother from 7.30am till 6.00pm Monday to friday and made myself ill

Original poster

QueenandKingMum · 20/10/2012 13:21

I feel very bad about this, as I only managed two weeks. Trouble was that I interviewed in the summer when I was slightly dormant, thought I had a handle on it. Now, I feel like the ultimate shit. I have really let them down. I haven't given them notice yet but I will do whatever it takes to make their transition to a new minder easy. And I adore their little girl. Again, vicious disease and it's not fair.

Saltire - I agree about the cold, it's agony. And the skin sensitivity is bloody awful. I'm sorry that's it affected your business too, so unfair when it's a job you love and can't do it. I think part time is the only way :(

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KentuckyFriedChildren · 20/10/2012 15:17

I started having symptoms after breaking my back 8 years ago but only got a firm diagnosis 3 years ago. At the moment I am feeling okayish but then its a day to day thing really isn't it. I haven't worked for 5 years now but have been refused dla despite my gps and consultants backing. I am currently pregnant with dc3 and dh has had to give up his offshore job to work close to home to look after me and the dcs as I can't cope on my own anymore. It's soul destroying feeling like this. And as hecate said its just a part of me now I don't actually remember the last time I wasn't in pain or bone crushingly tired. I also have thyroid issues and a liver condition which is getting worse at the moment. Fun times. I'm lucky to have a really supportive dh and mil.

Original poster

QueenandKingMum · 23/10/2012 11:52

Saw doc about increasing pregabalin, he mentioned to me that rheumy saw a slight positive for lupus but discounted it. He mentioned this to me when I said I felt like I am sunburnt the skin sensitivity is bloody awful. Also muscle enzymes were above normal range. My skin is so sensitive that its hurting to have kids touch me. What do you think? I see him in 3 weeks, I like him. I feel so slow like in a fog.

Anybody have any insight for me?

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mercibucket · 23/10/2012 12:10

For those of you with thyroid issues, have you checked your reverse t3 in case it is caused by the meds? And also of course checked t4 and t3 to make sure they are top of the range

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