Pain management consultant

[Stephanie6637]

Hello , I was told yesterday I have fibromyalgia , I also have severe Ankyolosing Spondylitis. My GP who is excellent said there is not really any treatment for it. I am on Adalimumab for the AS which doesn't really help. I ache all over have muscles that are too sore to touch and have severe fatigue. My Rheumatologist is not the best. I live in Northumberland and wondered if anyone could recommend a pain specialist here or in Newcastle upon Tyne. X

[desquinn Partner Volunteer FMAUK Trustee]

"My GP who is excellent said there is not really any treatment for it. "

There is no perfect treatment for it perhaps but that's not the same as any. Pregabalin, amitriptyline, duloxetine and CBT, activity as well as many other things, However, its a journey to find what works for you with many dead ends.

[Stephanie6637 in reply to desquinn]

Thank you for your reply. I am already on Amytriptyline and Gabapetin for the AS but they don't really help.

[desquinn Partner Volunteer FMAUK Trustee in reply to Stephanie6637]

medication reviews are worthwhile after giving things a try for a while. But some people will go through multiple meds before something that helps them. But, they may not reduce pain completely for example.

[Stephanie6637 in reply to desquinn]

I said to my Gp i am prepared to be in constant pain but I would like to get it down to a level where I could actually do things I find the fatigue hard to cope with its never ending.

[CopingwithEx]

Try acupuncture, gentle massages, Epsom salt baths and hot water bottles. Duloxetine seems to be really popular for Fibro treatment x

[boneyparts]

Hi Stephanie, I hope you have more luck than I did in the North West, I had 5 phone calls from Pain Management and some video clips ... the videos showed exercises that are impossible for me to do was told its an imaginary pain that no medication can help, it was inferred that I'm wasting my time and theirs.

Lets hope you get better help, I feel for you.

[boneyparts in reply to boneyparts]

Sorry I almost forgot about the the fact that they kept trying to convince me I must be anxious or suicidal.

[Polzovatel in reply to boneyparts]

Same service in the North West as well, I didn't even get video clips, just one printed page with basic exercises which took 2 months to arrive !

[Stephanie6637 in reply to Polzovatel]

My GP is excellent can't say the same for my Rheumatologist. She has referred me to a living well with pain unit so I will see what happens.

[Makie-Uppie in reply to boneyparts]

Yes you have to watch that, early on in this nonsense I had the head doctors trying to convince me I was suicidal because "it follows a logical course". They did more to make me suicidal with their insistence that I was than the F-word ever did.There is nothing nastier than a self-righteous semi trained expert. What you read in a book is theory, what happens in reality is sometimes quite different.

After saying repeatedly and quietly that as long as my kids were ok I didn't care and getting dismissive looks I eventually blew my top, the two experts (yes they hunt in pairs) then exchanged knowing looks and I excused myself apologising for my behaviour.

They sh*t themselves when about half an hour later I walked back in with a lawyer and the proof that their behaviour basically constituted torture.

Repeatedly not listening to someone is at best bullying and at worst torture in their own books.

I have had a similar experience with social workers whose opinion I had the temerity to disagree with and was even told once that if I did not behave my benefits would stop. What was I doing that was so bad, I accidently in conversation mentioned I paying for one of my kids to go to a skin clinic. out of said benefits. That also ended up with the lawyer.

Otherwise can not add much to the advice given to other members.

[Stephanie6637 in reply to boneyparts]

Hello , I live in Northumberland usually our hospitals etc are good. It's the fact they tell you that you have something but don't explain it to you. My Rheumatologist pushed a piece of paper towards me and said this is what you have , it said Ankyolosing Spondylitis, he then said ask the nurse for a leaflet on the way out.

[ChristineW18]

Ask your GP for a referral to a Pain Specialist ( ie Dr Bamigbade at Wansbeck) who can help with medication and may recommend referral to the Living Well with Pain Clinic. They run a joint psychological and Phyio clinic. I am in Northumberland and this is the route I am going down at the moment. I have advanced kidney disease so pain medication is a huge problem so I think the psychology/ physio is going to be my best option. My appt is not until the end of August but I will update then. Good luck with finding some help.

[Stephanie6637 in reply to ChristineW18]

Hello, my GP has referred me to the living well with pain clinic she said you have to go to a group session first then they tailor a programme for you. I live in Newbiggin by the Sea are you close to me ? I am a retired police officer I was looking forward to an active retirement but that won't happen now. X

[ChristineW18 in reply to Stephanie6637]

I'm in Amble so not far from you. I am on long term sick from my medical secretary job and I'm trying to get medically retired to access my NHS pension. I have issues with anxiety and depression mostly linked to the chronic pain I have and the lack of pain relief available to me. I exercise as much as possible to keep myself going but some days are very hard. The Living Well with Pain Clinic is my last my only option now. I have had my initial assessment so my next appt is for further input.

[Stephanie6637 in reply to ChristineW18]

Harry my dog and I were at Amble a few days ago but it was very busy so we didn't stop. My GP said she thinks I have become deconditioned due to shielding I said I wish I could get reconditioned. , I have depression and anxiety like you it's down to my chronic health issues. We should meet up for a coffee and talk about our journies.

[ChristineW18 in reply to Stephanie6637]

Amble is very busy at present with lots of tourists, I would imagine Newbiggen is probably the same. I live a couple of miles out the town and don't go there except to visit my mum. I went back to sheilding after "freedom day" as I didn't feel safe with all the people wearing masks. My dog has helped keep me sane too through all this she motivates me to get out for a walk as she is just young and a bit bonkers 😆

[Timmer79]

Hi Stephanie,

I've tried all the ones mentioned above with no luck- ive been diagnosed with fibro and osteo, with 'probable' spondylitis. I also have arthritus on both sides of L5 and fracture on Pars. I now get daily indigestion from all the tablets ive tried (i'm sure)

The only things that have helped me have been self-taught and built up over time. I'm no doctor, so what works for me might not for you (but not that they have been much use)

Have you tried Maximum paracetamol everyday (sounds daft- but just keeps my emotions a little in check)- at regular intervals alongside pregablin (sister drug to gabapentin) .

Try and balance what you have to do in the day- make a list and eeek it out- so its spread out over the week.

Use pregabalin before bed- so you sleep better.walk- everyday, as far as you can manage, but try to build up to around 6-8000 steps a day

Don't sit for longer than 1 hour at a time- just move about a bit. Im office bound- but i go and get a drink, walk for 10mins etc

I do zoom pilates, from a very good physio once a week (it really hurt the first at least 10 times)- i was on max zapain at the time-

ive now been doing reformer pilates once a week for the last 13 weeks (definately a killer the first 8 times)- but now i think this was the clincher for me/along with regular walks

I walk in the evenings, if i haven't done my 8000 steps

stretch wherever it hurts as often as you can- top of my back and SIJs are worst for me.

I've also changed from milk to oat milk, and reduced the red meat (because of the indigestion).

ALLL of this has been very gradual (using the 'fabulous' app to help me along the way) and I've done one thing at a time- once mastered and becomes routine, moved onto the next.

I was in agony- doctors were useless, pain clinic diagnosed me with fibro after one coversation!

had countless mri's, xrays, tablets, tears, struggles, but i now feel i am managing it the best i can.

Oh and most importantly- learn to say NO to those who always ask you to do things for them. You have to protect yourself and learn some sort of balance.

Hope this helps- if only a small part in that you're not alone xx

[Stephanie6637]

Hello, thank you very much for your helpful reply i will have a look at all of your suggestions. I was talking to my neighbour recently and he asked if I was ok before I could open my mouth another said of course she is. If she had the Pain I have even for a short maybe she would understand that not all conditions are visible I have an excellent Gp who is very supportive and helpful she said that they are doing research on pain killers that work in a totally different way to the ones we have now but they could be a few years down the line. I am on Gabapentin is pregabliin better?. Xx

[Timmer79 in reply to Stephanie6637]

I found pregabalin better for me, as gabapentin was stopping me thinking clearly and I was mixing my letters up on a page. And it was also making me really dry, I couldn't drink enough to keep up.After having the steroid injections in my back,I'm now reduced the proegabalin and on just paracetamol now (after reducing steps, jobs, work days etc to try and balance everything). Seems to be a moving target that I try and alter slightly as something new crops up.

But at least I'm not crying and emotional quite so often now and feel marginally more in control.

How are you feeling these days, the same?

I've found it's amazing how many people try and stop you from talking about your pain or fill your words in for you. I've pulled back from one friend because if it and now feel better for it.

Take care Stephanie xx

[priss58]

I live in Durham. I've had a very bad experience with the Rheumatologists here, so much so that my GP has referred me to Newcastle, which I hope is going to be good. My appointment is next February! Still, better than nothing, I've waited 18 months, so what's another 4! My GP really doesn't know anything about RA or Fibro, so I'm on no medication at all.