Fibromyalgia advice

ShelBell

Hi everyone,

This isn't dosh related, but I know there are a few fibro sufferers on here and couldn't think where else to ask.

My fibro is playing up a lot at the moment, particularly with extreme tenderness and soreness around the pressure points. As I also suffer with arthritis and SLE amongst other things, and have a spinal problem, I'm already taking tramadol and paracetemol daily. I can't take NSAIDs, and have not long had a course of steroids so can't have more of those.

What mess/techniques do you find work to relieve the pain associated with fibro?

I've trialled a few fibro meds recently, not sure I can remember the names, one was Lyrica, pregablin I think, the other I think was duloxetine, both had to be stopped as they made me zombied and I have an 11month old baby to care for.

Thanks,

Shelbell

mum-of-3

Have you been referred to a pain clinic yet?

ShelBell

Yes, been under one for a few years. As yet though they don't seem to actually do much. It's been my rheumatologist who has trialled the new meds. I'm back at pain clinic the week after next so will discuss it with them then but was hoping for some tips in the meantime for some temporary relief.

Penny-Pincher!!

Oramorph takes the edge off and have top up morphine injections when needed by my nurse. Also 4 lots of Tramadol daily. Along with SLE, FMS, Orstiaparosis (sp) I have other serious problems, so we sound quite similar.

What meds are you on to control the Lupus? I take Methotrexate and Prednisilone along with many others :-(

Are you breast feeding amd when was your last visit to see the Rhumy? Recently having a baby can totally mess your body up, so you should be being checked very regular ATM. You could contact your Rhumy nurse for advice and she may be able to send a script through to your pharmacist.

With your FMS flared currently, do you have anyone to take the baby for a few hours, so you can just sleep or do NOTHING? Pushing yourself through a flare is the worst thing to do, but having a little one will be tricky.

PM me with any questions.

Chin Up!

PP
xx

ShelBell

Thanks PP. Just come off the prednisoline, about to start on leflunomide in next 6 weeks (just waiting on some tests first). Saw my rheumo on Monday, but didn't realise the FM was flaring until afterwards. He is seeing me quite often at the moment. Not breastfeeding no, and he has 1 1/2 days at nursery per week to give me some rest time. Unfortunately hubby is working away sun-fri atm so things aren't easy on that front.

Any alternative therapies, or basics such as heat packs work for anyone?

mum-of-3

The same as penny-pincher! I have oramoprh here to take the edge of the pain and if I knock myself or have a sudden flare of a certain area! I also find amitriptiline great in the evenings!

ShelBell

Allergic to morphine and can't have the amytriptilline because it has a sedating effect and have to be able to get up to the baby.

Thanks anyway

mum-of-3

Have you tried gabapentin? The pain clinic prescribed it but it didn't do anything for me, yet a friend with fibro thinks its brilliant!

ShelBell

yup, it turned me into a walking zombie

Penny-Pincher!!

I personally find heat pads etc make my wrists/joints etc worse. I use special gloves and have to wear support stockings all day due to Hughes Syndrome. I am pretty much bed/house bound atm, but I have other ailments than the ones I listed but dont want to go into it IYKWIM. I use a body pillow support and have a special mattress that helps some of the pressure points so I dont get too many bed sores. Also have a pillow lift etc.

Do you have an OT? They have a catalogue with different aids you can buy including support gear and you should get them VAT free.

Ive never tried but know someone who has had accupuncture and it helped them. May be worth asking your Rhumy nurse for advice.

Also, I have read that a low protein diet can help auto-immune diseases and flare ups.

PP
xx

jenhug

i find reflexology and pilates have helped. i was terrified of the pilates causing more pain, but it hasn;t.