Hi

[Deblfc]

Hi ,this is my first post ,I suffer from a lot of illnesses ,but my fibromyalgia is a nightmare ,,I’ve got an appointment with the pain management clinic in broadgreen ,can anybody tell me what happens at these appointments thanks

[Hidden]

Hello newbie.. welcome. Sounds like u r not in the U.S..I have no clue where broadgreen is BUT..u came to the right place..and we look forward to reading more posts from ya.

[Deblfc in reply to Hidden]

Hi ,thanks for responding ,I’m in the uk 🇬🇧 Liverpool,,,,just tryin to get my head around all the symptoms of this ,,fybromyalgia think I,ll be here a long time 🤣🤣❤️❤️❤️

[Hidden in reply to Deblfc]

My mom has it, and my best friend has it.. its a brutal illness, and a lot of us get it... BUT.. we all got something going on here, so ur in the right place.

[Deblfc in reply to Hidden]

It will be good speaking to people who suffer the same pain ,,nobody understands what it’s like 🌺

[Hidden in reply to Deblfc]

Most people don't, because they don't live it daily....everyone here has there own stories to tell and we all seem to lend and ear or hold a hand to help out.

[Deblfc in reply to Hidden]

Rrrr that’s lovely 😊,,I’m just waiting for my appointment to come through for the pain management clinic already waited 3 months ,been on gabapenten 600mg a day and tramadol slow release 800mg a day ,,but it’s not touching the pain ,,I’m just hoping that the clinic can help m3 🤗

[Hidden in reply to Deblfc]

I wish u some relief

[JakeFromLondon in reply to Deblfc]

Hi. I’m in the UK too. Look, If you are really suffering, why are you not getting reasonable pain relief? Don’t struggle in pain. You are fortunate to have the NHS. I was struggling in pain for ages and only had tramadol. It covered some of the pain but not all of it. I had to print out a ‘pain scale’ chart (loads on google search) to show my DR I was at number 8 each day and was desperate. I didn’t know what a pain scale was, it just seemed like the only logical thing I could do to be taken seriously. Once my DR understood he was reasonable with better pain relief. I still take tramadol as it has SSRI properties for pain but I have something much stronger too. I’m also waiting for the pain clinic. 12 weeks so far. Hope you get the help you need. Jake.

[Deblfc in reply to JakeFromLondon]

Hi jake I’m on gabapentin and slow release tramadol ,nut there just not working ,,I’ve had to giv up work coz I just physically can’t do it,,my dr refereed me 2 nd April to the pain management clinic but if I’ve got to wait as long as you have ,I really dnt know what I,ll do ,,,my day consists of struggling and being in severe pain,all I can do is sit and watch the telly ,,I’ve put loads of weight on ,,I,m goin to c me gp on the 23 rd I might just bring it up see if there’s anything she can do ,she said she’s give me the strongest medication she’s allowed to ,,the next step is morphine ,,🥴🥴🥴

[Lulubee]

Hello 👋🏻UK person here. There is a Fibromyalgia UK site on here that might help. My experience of pain management (as opposed to pain clinic which I have yet to experience) is that it is the psychological side with some exercise etc thrown in.

[Deblfc in reply to Lulubee]

Rrrr thanks for getten I touch ,,that’s really helpful thanks x

[FRreedman in reply to Deblfc]

Hi, the pain clinic is normally run by a rheumatologist and an anaesthetist. Between them they will, hopefully, come up with a regimen of pain relief, which won't take away all the pain, but will greatly reduce it. Tbh, if you can, see an anaesthetic privately, ( about £200 in London), as the pain clinic can take up to 12 months to give you your first appointment. If you get referred to pain management, they will not offer any medication, not will they treat the cause of the pain. They will offer you alternative ways to cope with the pain. (in my opinion, a complete waste of time, money and resources). Good luck.

[Deblfc in reply to FRreedman]

Dya know what I had a feeling it was gunna be a waste of time,,,but I’ve been asking my dr for more pain relief and she says that I’m on the highest that she can prescribe me I’m on gabapentin 300mg twice a day ,,and slow release tramadol 200mg twice a day,and tbh it’s just not doin anything ,I’d say they start taken effect about 30 mins after takin them then after an hour n a bit I’m in proper pain again ,,so I’m dreading waiting for this appointment to come through especially if it’s gunna be a year and a waste of time ,,Thankyou for answering me

[Christinecove in reply to Deblfc]

Hi I’m in the UK too and I’ve been seeing a pain management Dr who has tried me on loads but nothing is touching me either. I had back surgery it damaged a nerve and I have no use of my left leg now. Ok I could accept that but it’s the nerve pain it’s so bad and the nerves come to life at night it’s dreadful. At the moment I’m on Gabapentin 1200 a day building up but I cannot keep on they are not touching it, so now I’ve got to slowly come off them. I also was on Tramadol, I’ve been on so much. I have now started myself on CBD oil from health shop and going to build that up something must help soon I’m so desperate. Mine is Neauopraxia. I’ll let you know how the CBD oil goes. Loads of people have said it’s good for them so I’ve got to give it a ago. The pain Dr just chats listens and tries to find what’s suitable for you that’s all.

Thanks Chrissy

[Deblfc in reply to Christinecove]

Rrrrr I know how you feel with the pain ,,I’m exactly the same ,,please keep me up to date on how your doing x

[Christinecove in reply to Deblfc]

Will do, thanks

[Lolort1000 in reply to Deblfc]

You are not on the highest dose of Gabapentin. I take 900 mgs three times a day.

[Christinecove in reply to Lolort1000]

Oh yes I know that but I feel this is not helping at all, so I doubt very much if a few more mg’s are going to help. I just feel I need to start easing it down. None of these do your brain any good anyway, yet alone my pain. I feel I’m having trouble concentrating sometimes and I know it’s due to the tablets. I could cope with all these side effects if they were helping the pain.

[FRreedman in reply to Deblfc]

I would suggest you ask your GP if she would try you on Slow Release stuff like Zomorph (Morphine) and back it up at night with Nortriptyline. You could then use the Tramadol or Oramorph (Morphine) for breakthrough pain. This regime won't stop the pain, but may reduce it enough to make it manageable.

[Deblfc in reply to FRreedman]

She said that she can’t prescribe it,,that’s why she’s sent me the pain clinic ,but from what I’ve read about that it seems like a waste of time ,,it’s really difficult for me to get out of the house,,I’ve tried to explain this to her but she just keeps saying that I’m on the highest dose she can prescribe it’s really frustrating 🤬🤬🤬🤬

[annie0261]

The problem is taking high doses of Gabapentin and Tramadol, brings other problems like; forgetfulness, the shakes, anxiety, mood swings, depression. I was so bad with forgetfulness I thought I had Alzheimer's and had a CT scan. I may be ill and the medication helps in some ways but damages in others. Even on high doses, the pain still doesn't go away. I don't want to forget all my memories, or have all my emotions staved - so choose your options very carefully.

[Deblfc in reply to annie0261]

I know ,,I’m on so much medication,,I’ve got bipolar with acute depression and anxiety,also got arthritis in my knees ,so aswell as the fibromyalgia I’m just constantly in pain,,I can’t sleep at night I always wake up with severing pain in my spine n legs it’s a nightmare. Xx

[greekqueen]

I found taking Gabapentin at full dose is one of the only things that HAS worked and basically saved my life, yes I have memory problems but it is a small price to pay for not having nerve pain 👌

[Milton2328]

Hey I've been to pain clinic i was very disheartened i had waited a long time to see them suffering really bad with pain in the meantime basically the advice from the pain clinic was diet exercise and meditation. I was so upset as i had already completely changed my diet 2yrs previous had tried to exercise but that just caused a flare up so that just left meditation which i had tried to do once before but wasn't for me so i never went back to the clinic after that. I would definitely go back to docs maybe ask to see another doctor I've seen over 10 different GPs in the last 4 plus yrs i do however know your GP can give you stronger meds they just don't like to i take pregabalin, naproxen, dihydrocodeine, paracetamol, and fentanyl patches you really have to stand your ground with them maybe do a bit of research into what they can and can't prescribe print off and take to your next GP appointment. I hope you get some relief soon 😁

[Deblfc in reply to Milton2328]

I had a feeling that it was just gunna be all that nonsense ,,I’m back at my go Tuesday ,,,I’m not goin all the way down there ( it’s miles away ) just to be told something that I already know ,,I’m quite sure there’s a much better way of spending our nhs money than on these clinics that don’t offer you anything you haven’t already tried ,,,,thankyou for gettin back to me