Newly diagnosed fibromyalgia

[AutumnLeavesSeptember]

My DH has been diagnosed with fibromyalgia after a long mis-diagnosis with another AI condition. He's been suffering for years and are both of us are finding it difficult to cope--DH with the terrible pain and fatigue, me with the additional housework, little kids care work and emotional load. We're both sad and scared as the fibromyalgia treatment options seem limited and prognosis bleak (in that remission seems pretty rare). Any words of wisdom?

Anybody?

Hi OP. I was recently diagnosed (in the summer) and given Gabapentin for the pain and referred to pain clinic. Sadly Gabapentin seems to have stopped working and I developed a nasty bout of flu a month ago which I am struggling to get over. Pain clinic waiting list is up to 9 months so haven’t seen them yet. Have an appointment early Dec with a senior GP at my practice to discuss as I can’t go on like this. Who diagnosed your husband and is he on any drugs? So sorry to hear your troubles, it’s a shit illness.

Hi OP,

I'm so sorry to hear about your husband's diagnosis. I was diagnosed eight years ago and lost my entire life to medication, every remedy under the sun & only now in the last two years am I starting to build up a relatively 'normal' life with this illness. I have hEDS too (collagen issue with the joints) but my main concern is always the fibromyalgia pain and fatigue that prevents me from living the life I've always wanted and imagined.

Has he been put on any medication so far? Amitryptaline combined with Gabapentin and co-codamol helped for a while but eventually they do stop working as effectively for some people (like me). Pain clinics here won't take us with fibromyalgia as it's a long term condition but I know other people have had luck in their NHS Trust areas so it's definitely worth looking into.

If you can wait (or afford it privately), counselling REALLY helps. CBT, especially.

Thanks so much for the posts ReggieKray and IStole.

He's going to the pain clinic at the moment which has been super helpful. It is really shit that neither of you have been able to access the pain clinic in your region. I'm so sorry. It's drastically underfunded here but it's helped him a lot. I wish they included couples counselling, that would be amazing.

He's been through a ton of medications for the previously misdiagnosed AI illness (which all had pretty substantial side effects). They didn't help in any way, but maybe that's because they were treating the wrong thing. I think he's going to start Amitryptyline soon.

It's exactly like you say Istole the big difficulty is coming to terms with having a totally different life than either of us had envisaged. This "new normal" is hard for both of us for very different reasons. I think we're feeling a bit lost.