Chronic pain/Fibromyalgia?

C

Causeway

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Joined
Jun 25, 2018
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11
#1
Does anyone have any experience with this?

My GP refuses to settle on a diagnosis as I've been referred to the "pain team" - only I've got two months to wait until I see anyone there. They keep cancelling, moving appointments...

GP also refuses to give me any medication because "we've tried everything" - I've had naproxen and tramadol, neither were great. Initial appointment with pain clinic I was told they don't prescribe and I need to co back to GP. GP says that's wrong and I need to wait for my next appointment.

Ive heard the advice - eat well, sleep, get exercise... I haven't washed my hair in nearly a month because I can't lift my arms. I try to work on it but they're so painful. I tried stretching them but the pain was so bad the next day I couldn't go into work.

I feel bruised all over. My bones (not my joints) feel like they're constantly snapping. There's no stifness, but I'm not strong enough to do anything.

My partner is very kind and supportive and cooks good things, but I throw everything up. I can't tolerate... most things. Brown rice is ok. Usually ok with plain fish, but I can't chew meat any more. Most fruit "burns" my mouth and anything vegetable is either too hard to bite or so mushy I retch. I tried huel, but it's expensive and made me very very ill.

I don't know what else to do. The pain just gets so overwhelming that I can't do anything.

I'm at the point where I don't want to live in this state.

I tried to talk to the crisis team who put me through to something with an answering machine?

I don't know how long I can keep going like this.
 
SomersetScorpio

SomersetScorpio

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#2
Sorry to hear that you're struggling with chronic pain/possible fibromyalgia. :low:

I have fibromyalgia and the support I get is minimal.
I was referred to a rheumatologist who gave me the diagnosis. From the time I saw my GP to the time I got my appointment, it was about 6 months.
It's a long time to wait when your quality of life is being affected so badly.

At the moment I take pregablin, which was prescribed for pain and my anxiety.
It has helped me with my pain levels just enough to be able to make exercise possible, and i've slowly built up some strength.
Before I was on pregablin, I couldn't walk the whole way around a standard sized supermarket, and now it's not a problem.

So it may be that once you have a diagnosis, they could try other types of meds rather than bog standard pain killers.
Pregablin I think is a drug that was first used for epilepsy but has been shown to help nerve pain.

The only other things I can suggest that have helped from a pain management point of view is heat (hot water bottles) and magnesium spray. The spray I have also contains lavender oil, so it has the added soothing benefit too.

It's horrible being in pain and you just want it to stop, but slowly slowly, it is possible for it to get a little bit easier.
 
C

Causeway

Member
Joined
Jun 25, 2018
Messages
11
#3
It's so frustrating....

I'm already on topiramate for migraines (again, also used for seizures) but it doesn't stop the pain everywhere else. It's like permanent flu. Woke up at 4am feeling like every bone in my arms had been broken and had to be at work for 8.

Got a very supportive manager so doing half days for the rest of the week (taking time off would just make my mood crash) but it can't go on forever.
 
Mayflower7

Mayflower7

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England
#4
Hi,
I have fibromyalgia and inflammatory arthritis, I understand chronic pain.
I'm so sorry your going thru this, I got referred to a rheumatologist.
He prescribed fentanyl pain relieving patches, I have tried loads of drugs.
Gabapentin is quite good.
Here to listen anytime.
I was working but had to give up as I just couldn't sleep with the pain.
I felt terrible all the time.
Have you had any blood tests to rule out other conditions?
Such a long wait for pain clinics, might be quicker asking to see a rheumatologist.
Take care
 
PinkCandyFloss

PinkCandyFloss

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Feb 20, 2019
Messages
87
Location
Northern Ireland
#5
I have fibromyalgia myself, I was only diagnosed last year even though I have struggled with chronic pain, fatigue, insomnia, migraines, anxiety, depression and more for many many years.
One of the issues I have found is that there is many doctors out there that don’t believe in it as a diagnosis.
There is only certain GPs in my practise I can go to, as others say there is nothing wrong with me and want me off pretty much all my meds.

Things have gotten so bad that I have now been unable to work for over a year (fighting for government help at the moment still which isn’t helping)
The pain is excruciating and then there’s the mental health aspect, IBS, vertigo, fatigue etc etc.

Is it possible for you to see another GP?

I too have been referred to a pain clinic, I have only had an information meeting as waiting list is up to 18 months, and my understanding is they can prescribe but will try other options if possible. At least that is the case in Northern Ireland

I do have issues even with the good GPs when it comes to pain meds, they say I can’t posisbly still be in pain if on 30/500 co-codamol 4 times and day and 500 naproxen twice a day. But I am, my understanding is the issue is they are being encouraged in many places to avoid prescribing opiate based painkillers because of addiction reasons. But this then means those of us who need them are left still in pain (most days I struggle not to cry and feel nauseous, some days the pain is so bad it causes vertigo)

I may have missed this somewhere, but is it only pain clinic you have been referred to?
I have also been referred to rheumatologist, for a second opinion and to rule out arthritis as another factor. (Again I’ve been told once this is sorted I may be able to get stronger painkillers)

I’ve also be re-referred to mental health team to help with that side of it. I’ve also a referral to gynaecologist for things related there.

It’s a horrid condition, and if you’re anything like me you have tried to push your way through it and maybe even ignored it for years. Also for years I wasn’t believed about my pain and other issues (around 13 years to be exact)
Make sure to look after yourself, REST! If you feel you cannot do something, simple don’t do it. Try not to be ashamed of things you can’t do. I rarely go out, if I go out I need days to recover afterwards and also need time to mentally prepare myself to even go to in the first place.

I rely heavily on my fiancé to do all household chores (if he brings me the dry washing I can sit on the sofa and fold them in stages) He has had to help me dress and undress, tie my shoes, brush and clean my hair and more. As he works full time I do sometimes have to struggle to do these things myself, but that’s the case for many I am sure.

It just angers me so much how fibromyalgia can be ignored at times
 
Mayflower7

Mayflower7

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#6
Hi Pinkcandyfloss,
Sorry to hear about your experiences, even on Fentanyl the pain is still pretty bad.
It angers me to that patients with fibromyalgia are ignored.
Here to listen anytime.
Take care