Help please

Hi there

I have been on long term 4 years of steroids for inflammatory bowel disease.

This combined with other treatments has left my adrenal gland not working well.

I am on 3.5mg of prednisolone on a long taper.adrenals are kicking in which is great.

Once I got down to 8mg I started to get shoulders hurting and joints hurting.

Lower I gone worse it gets , every morning is a struggle to get up and everything Hurt's so much.

I saw a rheumatologist and was diagnosed fibromyalgia.

As I was Ill again with stomach I was told to take 20mg steroids for a couple of days.

Hey presto get up next day fibromyalgia gone miracle.

Spoke to rheumotologist who said I stick with my diagnosis.

Since then I have spoken to doctor and nurses who look after my adrenal glands.

They say prednisolone does not cure fibromyalgia.

Also my CRP and ESR at raised one week next week ESR only.

Any ideas I'm booked to see new rheumo and a. Basically crippled.

Sorry for long post .

Thanks

[Dizzytwo Moderator]

Hello and welcome to the group, I agree there is no evidence that steroids help fibro as fibro in not known to be an inflammatory illness. I hope your new rheumy can offer you some idea to what is going on. They must have found something other than fibro to have given you steroids in the first place. You would be best asking why they are now stopping them IMO.

I am sorry but no one here is medically qualified to answer your questions I am sorry. Only your GP or rheumatologist could advise you. I feel for you that your in so much pain. If they have told you that you have fibro you could also have other things going on at the same time. I would ask your GP about the medications and therapies they can offer you for fibro to try and alleviate some of your pain.

You may like to consider locking your post for privacy reasons if you do this link will show you how .

healthunlocked.com/fibromya...

Momo

[M0AL61 Moderator Volunteer]

Hi Hidden ,

I have just quickly scanned over your post (tiredness and a bit foggy, so apologies). I did see where you mentioned that someone had told you that prednisolone does not cure fibromyalgia. In fact there is no cure at all for fibromyalgia. Some medications can help reduce the pain etc, but there is no cure. x

[ShelWhitt]

Don't know whether this will be any help. Had fibro for 40 years, but only diagnosed 10 years ago. Prior to that just physio for a bad back and painkillers. Eventually, in desperation, I paid to see a rheumatologist, and after a year of consults, tests, x rays, etc. including sessions with a chiropractor, it was decided I had polymyalgia and I was put on steroids for a year. It then transpired it wasn't polymyalgia after all, but fibromyalgia . I was tapered off the steroids and referred back to GP, where I have been ever since. My problems have got much worse but at the moment I have ditched all medication except my levothyroxine and occasional paracetamols as all medications i have tried have numerous side effects and i feel much worse on them than off, definitely not any better.I am now suffering, once again with really bad digestive issues so would be grateful if anyone on here has any advice for this. I suppose like all of you, as well as the constant pain and sleep disruption i lurch from other internal problems, plus eyes, head pain, numbness, tingling and it goes on. My best friend is my ot water bottle.

[Hidden]

Hi Dizzy Mal and Shell.

Dizzy i was put on steroids for chrons originally.

Have tried to taper 3 times with no success this time slowest tapering ever seems to be doing the trick for the adrenal glands.they are stopping them as adrenal glands will complete atrophy and will be lifelong steroids also would have to carry an injection etc.

I would like to lock post for privacy I can't seem to do it from the link.

An idiot newbie guide would be appreciated 😁

Hi Mal

I appreciate there is no cure for fibromyalgia what I was trying to get at is I actually believe in my case they must have gotten the diagnosis wrong as if I pop 20mg of prednisolone down I'm 100 percent better within 24 hrs.

Soon as I stop I'm crippled.

If steroids did that for fibromyalgia you would all be on 20mg dancing in the street 😁

I don't want to carry on steroids and kill my adrenal glands and hide whatever it is that I really have.

If what I have is degenerative or leads to something else then I'd be in trouble.

Hi shell.

It's not nice what you gone through to find out it wasn't a correct diagnosis.

When you where on the steroids did you feel like you where 100 percent better.

As they say polymyagia is very responsive to steroids.?

Stomach issues are horrible I have chrons which is in remission at the moment 😁

I Never take tablets on empty stomach unless stated otherwise.

Sometimes I take a day off eating or go on rice apple Bana brown toast diet for a Day or two to settle stomach.

If it's a chrons flare up no diet or anything make's a difference.

Hope yours settles soon.

If I can't make posts private I will have to delete tomorrow as I hate data breaches and social media making money off people's conditions.

Thanks

[minka]

Long term pred is bad for bones take calsium also to combat this

[Hidden]

Hi Minka

I all ready take it unfortunately it still gave me osteoporosis and diabetes type 2 which I have beaten with diet.

Gone through the whole shebang cushions syndrome .

Definitely good idea to be on vitamin D and Calcium .