Please help me :o( .... is this Fibromyligia ???? - LUPUS UK

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Please help me :o( .... is this Fibromyligia ????

weather66 profile image
10 Replies

The rhemy I saw in the beginning of Oct says that he thinks I have fibromyligia, when I saw him I was on a good day ... felt normal .. looked normal, no bad aches or pains, and I told him that had he had seen me 2 weeks previous I could barely drag myself out of bed!!

They have done more tests, and said if there was anything abnormal, they would call me, I havent heard anything, so I presume the tests are negative. I know the ANA test was negative.

I had 1 month of feeling normal and now I am back feeling like I have done 10 rounds with Mike Tyson!!!

I have no energy, feel so tired, aching arms, legs hips etc .... I feel like I am nearly dead!! I have a mouth full of ulcers and just feel absolutely horrible, I can' t think straight, let alone string a sentence together .....

Is this Fibromylgia??? ... I just dont know anymore and feel so helpless, can I go back to the doctor and ask her for more help ... I feel so crap, surely there must be something I can take to make me feel better.

I am currently taking amatripline and co-drydomol, but am still feeling rubbish, they are not making me feel any better

Sorry for moaning... just don't know what to do next as I am not due to see the rhemy for 4 months

Sue x

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weather66 profile image
weather66
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10 Replies
sunshine16 profile image
sunshine16

hi

sorry you're not feeling well and don't apologize ...try and ring the rheumatologist's secretary and see them while you are feeling poorly ..take care and be kind to yourself..i say to myself "this too will pass ".

best wishes

Thaddeus profile image
Thaddeus

Hello Weather

This all sounds horriblty familiar, Fybromyagia is a bit of a woolly term, and what you describe certainly comes within it.

Have you had a CPK test?

talula profile image
talula

O sue I so know what you are feeling, I agree with the others call your rummy and push for an appointment ASAP. I wish you well x

jennyhe profile image
jennyhe

Yes me to get an appointment with your rhumie and tell them just how you are feeling I have fibre as well as Lupus and it can make you feel very poorly ((((((hugs))))

NickyB profile image
NickyB

Hi :)

I have fibro aswell as lupus. My fibro is horrid & I was also on amitriptyline. How long you been on them? We do plateau with them.... It helped me get some sleep therefore had less pain next day. It was a good start for me to get me back to exercise. I no longer take it as GP put the dose up & I didn't like the side affects.

When you have both illnesses it's hard to tell the difference between the symptoms. Both are crippling pain. My hips suffer terribly. I get those days I get lost going to my mums & can't speak a sentence too. I'm sure it's fibro fog

weather66 profile image
weather66

I have tried ringing the rhemy secretary for 2 days now, without any reply, so I have sent her any email explaining how I am feeling now, hopefully she will ring me back and get me a sooner appointment.

He has said he wants to send me for hydro therapy, not sure if this is going to help me.

Does anyone take other tablets that help them, as being on amatripiline and co-drydomol is just not helping me at all.

The only good that they do is help me sleep at night.

Thank you everyone for coming back to me

Thaddeus profile image
Thaddeus

Hello Weather

I take 4 grms of Omacor ( concentrated omega ) for my triglycerides it has a side effect of being a very good anti-inflammatory for my muscles and joints. I get crampy and stiff if I come off it for more than a couple of days.

weather66 profile image
weather66

is that herbal or prescribed?

Thaddeus profile image
Thaddeus in reply toweather66

I get the omacor on prescription. It is classed as a dietary supplement.

I also take Hydroxychloroquine and a mild statin, both of these has a significant anti-inflammatory effect.

You may also fine co enzyme Q10 helpful for muscle cramps.

nanny4 profile image
nanny4

Hi, I take pregabalin for fibro,what a relief it had given me seriously ,it is prescribed by my doc,I take 75mg 3 times a day and I wish I had been given it years ago.My hips,knees,wrists,fingers, ankle and back have ached really bad for years,I take co codamol,amitriptyline 100mg at night ,I have tried anti inflammatory and tramadol,also morphine,but they never helped.Pregabalin is used for nerve pain,I think and I feel Soooooooo much better,I sleep loads better,and ache a lot less in the day,I have raynaulds and syjorgens, maybe ask your g.p to let you give it a try,good luck.Sandy

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