Pain for life

Annah

Hello all,
I was chatting to a neighbour today who has a diagnosis of fibromyalgia, but hers is not a simple case and she's got the doctors baffled with her severe joint problems and metabolic problems.

In the meantime, she's left as many of us are for the longest time, with a sort-of diagnosis (fibromyalgia), lots of statements from the doctors like "we've never had a patient like you before - I must tell my colleague" and a load of painkillers (most of which she's scared of taking due to her sensitivity to medication).

Whatever is wrong with her, they've found steroids help, and anti-inflammatory medication, while they think about their next move, test-wise. My friend doesn't know much about medicine so at least she isn't tempted to Google her symptoms and self-diagnose with rabies or beri-beri or something.

My neighbour's worst problem is the pain and the anxiety about what is causing the pain. "Will I be in pain for the rest of my life?" she asked me today. I told her its best not to think about anything as "the rest of your life", since things change, but to try to focus on the positive in the hear and now.

She is a great person who is devoted to local voluntary organisations, a mum and housewife, and in many respects she's coping fantastically, so I was surprised to hear her question. I answered it as best I could from my own experiences (2.5 years of tests followed by diagnosis of a rare form of a rare condition, and that purely by chance - I happened to see a doctor who'd worked in the clinic for the condition). But I wondered if the great hive mind of AC forum could come up with some comforting things to say to my neighbour?

valval

to be honest i have no idea we all differ and how we react to meds is so different but they can send her to pain clinic which will be a great help if all else fails just be there for her to let off steam val

dreamdaisy

I think pain (for most of us) is for life and we have to adjust our expectations of what we hoped life would be accordingly. I honestly don't know if there is anything comforting to say, all one can do is empathise. I reconciled myself to pain quite a while ago, after all it has been present in varying strengths since I began the arthritis in 1997, and it continues to boldly go where no pain bl**dy should but hey-ho that's my life with arthritis. It can be controlled to a certain extent with meds, pain management techniques and sheer bloody-mindedness but it takes time to learn what your personal strategies will be. What must be remembered is that one's person's untenable pain (no matter how small to us) is just that to them. It takes time to learn that arthritis doesn't govern us, we govern it, but that it is a hard lesson to learn. DD

Folara

I just accept that I will have pain of some sort or level for the rest of my life. My physio asked me today if I was happy for my Pain Consultant to nerve block my lumber region to give me relief and I basically told him I would try anything if it gave me less pain.

My main problem at the moment is getting my doctors (my lovely doc has just retired) to give me a diagnosis (fibromyalgia). They don't seem to want to commit themselves and it's driving me mad as they won't send me to a rheumatologist to get anything sorted. Apparently my pain is too generalized?

Fols x

phoenixoxo

Hi Annah,

My diagnosis of PsA came pretty swiftly, but I have experienced various members of the medical profession taking their time about other health concerns. This has caused me a great deal of worry, making the pain worse, then more anxiety… and so it goes on. It's difficult to provide an answer for your neighbour at this stage, simply because so much is unknown. I do agree with the others, though. I'd be inclined to suggest a referral to a pain management clinic as it may well help to let off steam. I went to one once and spent a lot of time talking about my anxiety re. lack of diagnosis. Suddenly the other docs got a bit more proactive, at last!

Best wishes,
Phoebe

bubbadog

Hi Annah, I had almost the same lines said to me when I was diagnoised with Fibromyalgia! But mine also came with 'you will never beable to work again!!' Which shocked me to the core! My G.P who I have a great relationship with is always calling me an Enigma because I baffle doctors!
It's amazing that alot of british G.P/Consultants don't know alot about Fibro, still when I'm asked about anyother medical conditions and I say Fibromyalgia the doctor will stare at me and say what is that? And I stare at them and say 'haven't you ever heard of it? It is a well known medical condition!'
And the way they try and treat Fibro is to dose you up with god knows how many different pain meds! I think I've been through a whole pharmacy of pain meds!! I have to make a joke out of it or I cry!!

barbara12

Hi Annah
I suppose like the others have said you do learn to adapt to the pain, and dont let it rule your life...and people are so different anyway..so do really well with there meds ...some not so well....hope this helps a little..xx