Fibromyalgia and therapy

All about caring
1

Sorry is this is in the wrong section, physical health and mental health issues.

One of my carees has long term Fibromyalgia receiving little treatment, not seeing any specialist, as there is nothing they can do, that’s what the hospital has says.
Along with diabetes 2 and arthritis, they are in pain ALL THE TIME, pain causes lack of sleep, lack of sleep leads to pain.
Basically tired depressed, in a very bad way.
The therapist who clearly has never had an ill day in her life thinks that my caree should be more positive and think of a better future, and shouldn’t be so negative all the time, staying in bed doesn’t help either.

Fibromyalgia is a chronic long term condition, you don’t get better, there is no cure, you can manage the symptoms with painkillers. But painkillers don’t resolve the pain issues, they wear off and you wake up in pain.
That my caree should get up more, stop moping about, get up see the world, my caree can barely manage to get around the house, let alone go shopping etc.

The therapist we have seen her just walk out the therapy centre, chuck her handbag in the back and drive off, obviously knows nothing about disability/mobility issues.

I took my caree to one of those dreadful, are you fit for work interviews, along with the anxiety, it took almost 15 minutes to get to the waiting room, my caree very slow uses sticks, walker frame, rollator thing with wheels, manual wheelchair or a scooter for the rare day out.
So if they were watching out the window, then they would see the mobility and anxiety issues.

My caree is very depressed, there are obvious links between ill health and depression, the frustration, the pain, bad sleep etc.
The therapist can’t see this and just doesn’t understand.

Honestly , there are some days when my caree has days she wants to end her life, she is on antidepressants and the therapy should be helping, it is not.

Should the therapist be trained about physical illness, the attitude isn’t very helpful, that my caree is wasting her life away stuck inside whereas she could and should be out enjoying herself.
How can you enjoy yourself when you are in pain all the time? you can’t

I too have fibromyalgia,am an unpaid carer, I suffer pain all the time although not as bad as my caree, I can walk, I can drive.
I drive the caree to the appointments as there is just no easy way of getting there and my caree shares the issues with me, i understand as i see the issues on a daily basis, the tiredness, the pain, the frustration, the depression, the therapist just doesn’t have a clue.

2

Hi Londonbound.

Fibromyalgia ?

On the radar of the FMA ( Fibromyalgia Action UK ) ?

http://www.fmauk.org/

Forums and a search facility for local support groups available through the main page.

As for the academics and suits out there , I would bounce their indifference off the FMA forum members.

3

Is fibromyalgia anything like PMR? Polymyalgia Rheumatica? My husband was recently diagnosed with this. He is being treated with Prednisalone(Steroids) and it’s having a truly amazingly positive effect.

4

I have had fibromyalgia almost 20 years now, at diagnosis I tried finding local support groups but just nothing too many false leads, yes there is one, no there isn’t.

I have looked at FMA , I think I was a member then, no local support group, nearest 20 miles away, another county, I just get directed to the support in that county but not my county.

I have looked at FMA, I have fibromyalgia AND I am an unpaid carer, there just isn’t much information about this.

I have heard of PMR, it can be resolved with steroids and medication.

Fibromyalgia, a lot of doctors just don’t believe in it and the links to chronic fatigue, there is little research and no cure.

I am on Pregablin, lyrica that reduces nerve pain but doesn’t cure fibromyalgia.

you have good days and bad days, people just don’t understand one day crippled with pain, the next you are gardening.

5

Londonbound, unfortunately I think it’s like caring - unless you have been their i.e. in constant pain with something - it’s hard to understand. I’m not saying this is right - professionals should WILLING to do their best to understand and those assessing others should be in full possession of the facts and recent research findings.

When my osteoarthritis was at its worse and I was often reduced to using crutches, shop-mobility etc I used to use the Spoon Theory to explain to others why sometimes I had good days and why they were usually followed by bad days. I think this explanation would be equally valid for fibromyalgia.

Melly1

6

Thanks haven’t heard of the spoons theory but very similar to mine, if you have say 20 units of energy a day, you can use 10 just getting out of bed dressed etc, if you then go out another 10 units, no units left, but you need a few to go to bed.
So you are then on a minus and exhausted, staying in the next day saves units.

So very similar.

The lack of knowledge and understanding to look at someone with fibromyalgia, you see nothing wrong, same with mental illness, an invisable illness.

And that one day you are walking fine, the next a flare up, and you can barely walk.

Someone looking fit and healthy simply won’t and don’t get the help and support.

Lady Ga Ga has fibromyalgia, so that helps with recognition of fibromyalgia.