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Autoimmune disease


4 replies

Therewere5inthebed · 28/01/2019 14:51

I’ve had severe pain for four years, joint pain and stiffness, muscle tightness, and I’ve always had very over extending joints.

Despite many, many visits to my GP I’ve always been dismissed and have often left in tears, of frustration and the dread of more pain without any help.

This changed in October, after having a raised RA factor in my last blood test my GP put me on prednisolone which stopped the symptoms within 18 hrs. I felt like me again.

I developed clicking in all of my previously painful joints though, a new symptom but one I could live with as I didn’t hurt anymore.

She also referred me to a Rheumatologist who I finally saw today.

I explained all of my symptoms and that I had a total knee replacement 2 years ago which is healing badly. (age 43)

The outcome today was that she thinks it’s Fibromyalgia, she checked pressure points, they were all tender and I ticked many of the boxes for the other Fibro symptoms.

I need to wait for the blood results but from the pain I had in my hands I assumed there would be damage to the joints on the x-rays but there was none visible.

The first step is to stop the prednisolone so the Rheumatologist can see active disease however I’m so worried that my symptoms are going to come back with a vengeance with the total tailoring off of the prednisolone as when I tailored off before Christmas and got from 30 to 15mg daily the symptoms came back immediately and then I’ll be no better off than I was previously so at the advice of my GP increased to 20mg daily. The thought of zero pred is horrible.

I really can’t bear the thought of hurting so much again and it’s making me feel really tearful.

OP posts:
KinkyDoritowithsparkleson · 02/02/2019 08:48

That's tough and it's awful to have to do this when you know you have something that works for you. But I would stay focused on that - you do have a medication that helps you and you will be taking it again.

If it starts to get bad, you want to see GP for urgent apt with the Rheumatologist, or contact them directly, rather than having to wait when you are struggling?

Dodie66 · 02/02/2019 09:23

The blood test results won’t show if you have fibromyalgia. I have it and the only way it was diagnosed was by ruling out other conditions and seeing a Rheumatologist who then did the pressure test like yours did and said I have fibromyalgia.
They will also be concerned about the long term use of prednisolone. I hope you can get some help. I just take painkillers daily.

Therewere5inthebed · 06/02/2019 20:11

Thanks for your replies, i’ve Weaned down to 15mg of pred and woke up in pain for the first time in months this morning.

Thankfully my GP has received the letter from the rheumatologist and they’ve prescribed me Gabapentin, I collected it today and have really frightened myself reading the leaflet in the box (the pharmacist emphasised that I really should read it as I usually wouldn’t unless I had an issue)

I’m really hoping it works for me and I don’t have the possible side effects -more than 1 in 10 get fevers and infections inc pneumonia- seems risky to me...

OP posts:
BlueSatsuma · 09/02/2019 21:14

I have rheumatoid Arthritis and fibromyalgia, it’s awful. I’m on methotrexate for the RA and tramadol for the Fibromyalgia.

The pain and fatigue are constantly there.

You should look into PIP. I’m severely affected so qualified straightaway.

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