Pain Management Clinic: Good afternoon... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Pain Management Clinic

Nell1 profile image
36 Replies

Good afternoon all and thank you for taking the time to read my post.

My Rheumatologist has recently booked me to a Pain Management Clinic. I have been diagnosed with Severe Fibromyalgia plus underlying issues namely disc Degenerative Disease/ tempormandular joint disorder/multiple white lesions to the brain/ inflammation to both feet. I have that much pain I sometimes wonder how my body is coping with all that’s going on. I have been taking for over a year amitryptalin 10mgx 5 daily plus Tramadol 50g every 4 hours. Nothing helps only makes me feel more zombiefied daily. Physio have said there is nothing they can do because the Fibro is affecting to many parts of the body.

My question is how can or what will this pain management clinic offer. I would appreciate anyones views who have also taken this path with pain.

Thanks for reading everyone now back to my Tens Machine. 🤦‍♀️

36 Replies
Painny profile image
Painny

I was referred to pain management clinic twice. For me they did not offer anything unless you are prepared to take medications. Apart from meds I’m not sure if they offer anything else

I hope they will be of help to you 💐

releasethemagic profile image
releasethemagic

You might have a really long wait for an appointment with the NHS. Certainly in South Wales, where I live now, the wait for a first appointment with Pain Management is 46 weeks and after that you wait again to be invited to join the course/programme. I did my own pain management course in Leicester and it was excellent. There is an online course that one NHS Trust has made available and it is worth looking at to see the sort of thing that the programmes cover. This link will take you to it pat.nhs.uk/pain-management-...

Painny profile image
Painny in reply to releasethemagic

Thank you for the great advice, I opened the link and plan to go through each of them when I’m able to. Hopefully tomorrow. 🙏🏻🙏🏻💐

Nell1 profile image
Nell1 in reply to releasethemagic

Thank you releasethemagic. I’m having my first appointment on 6th Sept. Glad I did not have the long wait. I am really struggling.

Thank you for the link. I will look through that tonight 😘

BlueTofu profile image
BlueTofu in reply to releasethemagic

Thank you so much for the link! I've been waiting nearly a year for an online course. I've done some work on pacing on my own which helped. But am now working my way through the course on the link!

fmlife profile image
fmlife

pain clinic had a ultra sound guided pain killer for the ultra sound guided steriod injection into joints, my next rhummy just went straight in with the steriod no messing with the pain killer or the electrics. all hurt was incapacitated next day.

*******************************************************************

each year have a injection of steriod in the backside for an allergy, due to world shortage of normal one this year was 'kenlog' it has a side effect that is very up and very down in mood felt all at odds.

The reason mention is it goes into every cell every joint. may help your fibro.

gentle hugs

Nell1 profile image
Nell1 in reply to fmlife

Thank you fmlife. The rheumatologist did give me a steroid injection on my last visit to him In early May. Said it would take 24 hours to take effect. Unfortunately no relief at all. Following my Facet block injection also in May 2022 and no relief surgeon has suggested Oblition of the nerves in my lumber. Whatever that means. Due Early Sept 😬 this Fibromyalgia has caused numerous underlying extra conditions apart from the normal pain. I am at my wits end with body pain. Don’t know what to blame the next pain on. I’m thinking the Pain Management team will think I’m a lost cause, and not knowing what if anything to attempt next. Thank you for the advice 🤦‍♀️

Whomovedmycoffee profile image
Whomovedmycoffee in reply to Nell1

Do you mean a denervation? I had it done on my neck after trying a nerve block. As I understand it they burn off the nerve so there is no pain signal, the nerve can regrow but it takes time. The procedure itself isn't that different to the nerve block you had. A denervation is longer lasting than the block. I hope that helps, although ask your specialist for details as I'm just a patient.

fmlife profile image
fmlife

hope they can find some relief for you.

may wish to research 'udder mint', it is designed to treat bovine udders, (slightly out of fibro box) however there are some interesting online claims, that may raise a smile.

Maz83 profile image
Maz83

I was referred to pain management, and I have acupuncture and lidocaine infusions through them. I have to say they have helped me no end.

I hope they are able to help you find some relief x

Nell1 profile image
Nell1 in reply to Maz83

Thanks Maz83

Hev2 profile image
Hev2

I had sessions with a psychologist- we looked at breathing techniques for pain and mindfulness.Some of which I have found very helpful when things are too much

I’m in a similar situation to you apart from leisons.

I stopped taking all the meds a few years ago, as I was constantly putting more weight on.

Some of the breathing really help me, when the pain has taken over again.

Well worth it if that’s what is offered near you.

Good luck

Nell1 profile image
Nell1 in reply to Hev2

Thanks Hev2

Chloeblue profile image
Chloeblue

HiI have just had a steroid injection at the pain clinic into my back as I suffer like you. It’s early days but seems to have really helped as I feel my muscles were stuck in spasm. I’ve waited a long time and eventually feel I’m getting somewhere. It’s amazing how when back pain is relieved, the pain elsewhere seems to too. I also take pregabalin

Nell1 profile image
Nell1 in reply to Chloeblue

Thanks Chloeblue. Really hope your injections work.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I’ve never been too a pain clinic but I see you have had some good replies from members, you have alot too contend with on a daily basis so I do hope you get the help you need. xx

Nell1 profile image
Nell1 in reply to Yassytina

Thanks Yassytina. Like us all I’ll just have to plod on.

Yassytina profile image
YassytinaFMA UK Volunteer in reply to Nell1

I know it’s horrid but good to chat here and let off frustration , I can differently share with you.

Mrdiagnosis profile image
Mrdiagnosis

Hi Nell1 Pain management is more about your state of mind and how YOU manage your day to day routine. It is very personal journey and everyone is different. Along with drugs trying different medications they offer support and non invasive treatment.

I've had 3 different types of pain management over the years and the only one that made a difference was the way I think about pain.

Yes I'm in pain daily , but it now doesn't define who I am . I know I'm going to be in pain but it is what it is . I'm lucky to be alive what with the story of the young child who's life support was turned off by the medial profession I feel lucky to be alive and the pain reminds me I'm still alive .

I hope that you find some way whatever that may be to help you live a better life .

Take care of yourself.

Nell1 profile image
Nell1 in reply to Mrdiagnosis

Thank you Mrdiagnosis.

Confused01 profile image
Confused01

Wow..you got an appointment fast 👍🏻😀. Looking at 26 weeks before even assessment for.In my area there is Community Pain Clinic and Hosoital pain clinic. From Community Clinic experience it felt like a waste of time and money fob off. Chat, chat, chat and nothing more. Waste of resources. They have no actual ability to do anything, just refer on . Wastes a lot of time tbh and leaves the pain!

Hosoital Pain Clinic ??they can/will do appropriate procedures and generally get to this one if Consultant refers.

Depending on what’s causing pain they can offer, steroid injections, denervation etc.

Some have said that Pain Clinics can try and teach people how to ‘cope’ with pain 😡😡😡. Obviously they don’t have the pain! So hard to live with.

Meds…being zombies up with meds isn’t the answer (I get have to when no choice). However, meds concoctions have been known to actually do no good as they create further body toxins, especially long term.

I do hope you get help and please update on here.

Xx

Nell1 profile image
Nell1 in reply to Confused01

Thank you confused01. I will keep everyone updated. 😘

Maria31 profile image
Maria31

I managed to see a pain manager very fast as it just so happened that a local private hospital was picking up NHS referrals. I’ve had steroid injections to back and a lidocaine infusion, and I’m going in for pulsed radiofrequency ablation this week. She is lovely but unfortunately nothing has really helped so far. I have pain all over with good and bad days. If you haven’t tried already look into the Curable app and the mind body approach to pain. As others have said, it’s about how you look at the pain that can make a difference. Good luck x

Nell1 profile image
Nell1 in reply to Maria31

Thank you Maria31. I will defo look into it. X

Phonix2 profile image
Phonix2

Hi I have been to pain clinic they suggested talking therapy group meeting, basically didn’t help. I tryed steroid injections it helps short term for me, acupuncture helps slightly but costly. I was told you just have to live with it.

Nell1 profile image
Nell1 in reply to Phonix2

Thank you Phonix2.

KateMaguire profile image
KateMaguire

Sorry you're in so much pain. I found my pain clinic to be helpful. They hold a series of classes which helps you to understand how fibromyalgia affects you and lots of ideas and suggestions on how to make it more manageable. Obviously every case is different but I learned a few things and just the fact of being with a few other people in the same boat was nice,I felt less isolated and I kept in touch with a lady living nearby . I would give them a chance, you might be pleasantly surprised xx

Nell1 profile image
Nell1 in reply to KateMaguire

Thank you Kate. I’ll try anything at this stage 😘

Bakery40 profile image
Bakery40

Hi Nell1 , I had pain clinic within few weeks because someone cancelled and I was on the waiting list. The pain clinic I went on lasted for 3 weeks, every working day 9am - 4 pm . Very intense and they want you to come if you have a flare up or not so they see how you actually are. We could lye down when we needed, rest as long as we attended. We did mindful movements every day, but we did as much we could on that day. We had physiotherapist, psychologist and nurse there. They all had their sessions with us and also 1:1 with us. Once we completed it we had graduation. It was only group of 9 people. I enjoyed it and find it useful. Definitely take it if it's offered to you, I think as you have nothing to lose. Take care 🙂. X

Nell1 profile image
Nell1 in reply to Bakery40

Thank you Bakery40. I’ll look forward to anything that works. 😘

rosewine profile image
rosewine

I asked to be referred and waited about 6 months and it was a zoom appointment with a qualified physio who had trained in pain management. I was offered hydrotherapy but there is over a years waiting list. He also offered acupuncture with Tens attached, mindfulness etc and said I would wait about 3 months for that. The appointment was in January and about two months later I had a letter from the hospital saying due to the back log because of Covid they would have no appointments in the forseable future. He did say if the pain got unbearable in a certain area of my back to contact them about having a pain killing injection but due to the above I am not overly optimistic. He did tell me to use lidocaine patches every night in that very painful area rather than wait until the pain was at its peak. Such a shame about the lack of appointments as I was thrilled I had been listened to and was looking forward to trying the treatments.

From what I have heard from people what is offered seems to vary from region to region, I do hope they can offer something to help you. Good luck.x

Nell1 profile image
Nell1 in reply to rosewine

Thank you Rosewine x

blackphoenix profile image
blackphoenix

Hi, I am under the pain management clinic at my local hospital and my consultant is fantastic. I have trigger point injections every 4 months and will also be having a supra scapula nerve block with my next appointment. Sadly though this only treats the pain in my neck and shoulder from my Myasthenia and Arthritis. I have fibro pain and “burning” in other areas of my body that is just treated with daily pain meds. I am on Gabapentin for my fibromyalgia, Celecoxib and Methotrexate for my arthritis and the pain from my Myasthenia is treated with morphine patches and oral morphine for those days that are extra bad (actually it’s usually nights that I have to take it rather than during the day). TBH, I am never totally free from pain and have had to just live with it as best I can because I really don’t want to be taking any more pain medication.

Nell1 profile image
Nell1 in reply to blackphoenix

Thank you blackphoenix. This info is so good. Im hoping to be offered some sort of pain patches for relief as meds are not touching the pain at all 😘

blackphoenix profile image
blackphoenix in reply to Nell1

Glad it helps, fingers crossed that you get the option of patches. They are very versatile because you can change the dosage depending on how much pain you are feeling. After my trigger point injections, I can usually cope with 10mg but as my pain gradually increases again I can increase to 15mg and then up to 20mg if I really need to. If they don’t automatically offer the option of patches, don’t be afraid to mention that you would like to give them a go ☺️👍🏼

Nell1 profile image
Nell1 in reply to blackphoenix

Definitely want to try. I’ve spent the last 15 months increasing the dosage of meds with little or no relief. Plus Facet block and steroid injections. It’s the first request I’ll be making when I get there 🤞

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