New diagnosis

[Linda3009]

Hello again.

I had a meeting with my Rheumatologist yesterday. It's now six weeks since I stopped taking prednisolone.

My latest esr and crp were both normal, and based on this, the diagnosis had now switched to fibromyalgia with a bit of osteoarthritis thrown in.

The consultant says that there's nothing to be done, I just have to find a way to live with it.

I have an appointment with a neurologist on Sunday which he advised me to cancel as they won't be able to do anything for me either.

I'm not sure whether to cancel or not and if appreciate any opinions and/or advice.

[PMRpro Ambassador]

What are your symptoms now?

[Linda3009]

Still very tired. Aching muscles, joint pain and very tender spot on my scalp.

[Hidden in reply to Linda3009]

Where on your scalp? If it is the back/base area then that is a fibro trigger/tender point. Here is a diagram.

images.app.goo.gl/VzWBP5Hk4...

[Hidden]

Hi linda3009, well it's a windy road for you isn't it?!!! I am glad it's not GCA but sad if its fibromyalgia......

Regarding fibromyalgia....your Dr is misinformed about the treatment of fibro. You can seek pain relief, meds for nerve pain and you can use exercise and diet to help. It's the same mantra though...rest but keep as active as you can....I have had fibro for around 18years or so (it could be longer but I forget!). It has its ups and downs but you do learn to manage them. However first you need a referral to a pain clinic. They were really helpful for me years ago. For the moment I will direct you to the following links. Pm me if you need any help....there is a fibro forum, just search in the communities. Best wishes. 🌻

medicalnewstoday.com/articl...

healthline.com/health/fibro...

[Linda3009]

Thanks. That's a really useful article.

Perhaps unsurprisingly, I've got most of the tender spots, plus a few new ones of my own!

Scalp is very sore to touch on the crown, and very tender points below my armpits (initially I thought my underworked bra was the culprit)

Do you think that the neurologist might be helpful?

[Hidden in reply to Linda3009]

To be honest I would go if only to get assessed by one and hopefully get some pain meds. After all the basis of the pain you are having is a result of the central nervous system and the brain constantly being in a state of high alert. There is no injury that would normally send the pain signals, the gate is just left open so the brain interprets it as pain (that's my simple way of looking at it).

If it is fibro...On the good news side is that if you can do exercise/ activity it is unlikely to hurt your actual body. It will hurt but the meds help you so you can still function. On the bad news side there is a lot of fatigue during flares. Try some co-codamol from the pharmacy to help you at the moment. I did have some morphine for a while at first, but then got tramadol and amitriptyline. Once you get it controlled you might be a lucky customer who doesn't flare again. I pushed myself to drive 200 miles a day and worked 12 to 14hrs a day for 5 years so Ive never really recovered from that. So take care of yourself.🌻

[Linda3009]

Thanks very much for your time and encouragement 😊