Seem to have a flare up

[chasingmytail]

Ive been living with this for 20 odd years but last 10ish years had it generally under control but before Christmas (prob start of Covid) my symptoms have been creeping up again. Lots of energy drop out and that aching has started again. Last week been feeling awful (head issues)

Ive been Zooming with rhumatologist to see whether there was any other issues like sjorgens (dryness). Bloods come back good apart from low vit D and Calcium,

She is writing to GP to inform findings and what she recommends:

So I will have the following options; Hydroxychloroquine, pregabalin/gabapentin, amitriptyline/SNRIs.

I am taking Vit D (2000), K2 (7) magnesium Glycinate.

I am considering at B12 transdermal via patches (thoughts)

I am looking on feedback on options which you feel have helped you manage this condition. Without endless spending.

My head pressure is particularly bad at the mo. which in turn makes my mood completely floor.

Many thanks

 

[pattismith]

I 'm sure your doc will find out something to help you dealing with this flare.

I have similar 35 year old disease as yours.

With time, Dopamine brain circuit went worse and worse, with hypersomnia, head pressure and restless legs.

I too have dry eyes, and also polyenthesopathy and scalp/face seborrheic dermatitis, so I wonder if I may have Psoriasis or Sjogren. Nothing ever shows up in my blood, and my lip biopsy was not conclusive.

I had a flare this winter after a flu vaccine, so Psoriasis may be something to consider.

35% Fibro people showed polyenthesopathy at ultrasound, but enthesopathy leads to increased pain only if your central dopamine network is affected.

I got methylphenidate and got instant relief of pain/headache/fatigue/hypersomnia: it means that raising Dopamine in my brain is very potent in the short term.

High dose AINS can also help if you have polyenthesopathy, but it's not something to consider on a long term without kidneys damages. Low daily dose may be manageable on the long run to help.



Central Role of Dopamine in Fibromyalgia (practicalpainmanagement.com)

Assessment of enthesis in patients with psoriatic arthritis and fibromyalgia using clinical examination and ultrasound - PubMed (nih.gov)