Searching for Medication

[ButterflyWine]

Hi All! I was diagnosed with Fibromyalgia in late 2020 following a burnout in late 2019. A GP diagnosed me as my local Rheumatology team 'don't deal with Fibromyalgia'...Anyway, I have tried various meds (Amitriptyline, Pregabalin, Gabapentin, Nefopam, Celebrex, Tramadol, Codeine, Co-codamol), and nothing works. Last September I ended up in hospital and got diagnosed with Pancreatitis and was treated with oral morphine and ALL of my pain was resolved. I believe that my pain doesn't respond to typical Fibro meds because it's not Fibro; the pain is not somatic, however my GP will not prescribe anything stronger than the Buprenorphine patches that I'm on (10mcg, which also don't help). I'm currently on long term sick leave and have gone through 4 jobs since the end of 2019 due to the amount of sick leave I've had to take.

So...does anyone have any ideas as to what I can ask for, or what I can do going forward???

[fmlife]

hi 👋

have they tried a steroid injection in bottom,

cocodomol never worked for me,

or sulpherzalazine,

amptripaline

nortripline

clozepam,

am sure was another cold turkey one zop something any how licra, a

d med and n also caused ibs there has been so many.

meptid and paracetamol was on for some time before internals reacted to meptid ibs

now on paracetamol and a magnetic bracelet pacing using tools,

gluten free lacto free eat wraps instead of bread, and salad salad salad without the nightshade family

here is an interesting thing the less i do, the less i weigh, when do my weight increases🙄 so does the pain so must be inflammation,

took promethazine for sleep its an drowsy anti histamine

gentle hugs

[ButterflyWine in reply to fmlife]

Hi there!

I've not had a steroid injection there! I've had several in my shoulders and elbows though (to no avail).

It's being considered that I might have Lupus due to some other symptoms that fit with that diagnosis plus my CRP and ESR levels have been consistently raised for many years and I have been told that Fibro isn't inflammatory?

I have a Pain Consultant so is it worth asking to try a steroid injection?

[Lovecavatese in reply to ButterflyWine]

Hi , how long did you try Pregabalin for? It takes time to build up an effective dose and is not just for muscle pain it’s for nerve pain and helps a great deal as I have 7 slipped discs as well as fibro, the usual codine pills don’t work for me so , no tramadol, or muscle relaxants that is quite usual for fibromyalgia I believe, our pleasure receptors decline apparently. Infections and inflammatory arthritis raises CRP levels I became ill the same time as you but I think they believe I had early Covid as I was exhausted and had a type of flu. Duloxetine worked to give me energy as it increases adrenaline levels not just serotonin. The docs do not like giving morphine analogues as this is reserved for cancer patients and doesn’t serve to benefit fibromyalgia patients, according to NICE guidelines. Hope this helps

[ButterflyWine in reply to Lovecavatese]

I was on Pregabalin for about 3 years. My pain isn't somatic and I do respond to morphine, therefore my new GP also thinks I don't have Fibromyalgia. It's possible that I actually have SLE due to my actual symptoms, and this is finally being looked into by Rheumatology.

I can't take any antidepressants as I also have bipolar disorder and they can trigger mania unfortunately, so duloxetine is out.

I do also have a condition called MBL, which is the precursor to a type of Leukaemia. I have a very complex medical history sadly but I was wondering what else I could try or ask for in relation to the symptoms. I have considered alternative therapies and have also heard about Low Dose Naltrexone. Any opinions on that?

[fmlife in reply to ButterflyWine]

a depo steriod the rhummy was the first to try it in my health journey. its old school. read, research, decide for your situation.

mentioned because it was not listed. you sounded like everything else had been done

have a discussion on the positives negatives v side effects.

my furr has for years been given a steroid injection by the vet for every ailment had. interestingly their bowels control their immune system,

so thats why looked into what was eating asked doc opinion its been a long journey