Fibromyalgia specialist

[Africanmonkey]

Is there such thing as a fibromyalgia specialist as this is now keeping me awake at night. It comes in new places now and I am coming off my Codine as its stopped working for me

[ftorres18]

Yes, there are healthcare professionals who can help with fibromyalgia, but it’s important to note that there’s not always a single “fibromyalgia specialist” with that exact title. Instead, fibromyalgia is often managed by a team of professionals with experience in chronic pain and related conditions.

Who Can Help with Fibromyalgia?

1. Rheumatologists: They specialise in musculoskeletal and autoimmune conditions. While not all focus on fibromyalgia, they are often the first point of referral.

2. Pain Management Specialists: Doctors trained specifically to address chronic pain with a variety of approaches.

3. Neurologists: Since fibromyalgia involves nerve pain and sensitivity, neurologists can sometimes help, especially with medication management.

4. Physiotherapists: They can create exercise plans to help manage stiffness and pain.

5. General Practitioners (GPs): GPs with experience in chronic pain can coordinate treatment plans, including medication changes.

Your Current Situation:

It sounds like your pain is spreading to new areas, and the codeine has stopped working. This can be a sign that your current treatment plan needs adjusting, which is not unusual with fibromyalgia.

What You Can Do:

1. Ask your GP for a referral: Request to see a pain management clinic or a rheumatologist with experience in fibromyalgia.

2. Medication review: Since codeine has stopped working, discuss alternative medications, such as:

• Pregabalin or gabapentin: For nerve pain.

• Amitriptyline or duloxetine: To help with pain and improve sleep.

3. Lifestyle adjustments: Gentle activities like stretching, yoga, or swimming can help reduce pain over time.

4. Sleep hygiene: Prioritise sleep by creating a routine and a comfortable environment. Lack of sleep can make pain worse.

5. Look into support groups: Talking with others who understand fibromyalgia can help reduce stress and isolation.

Final reflection:

While there may not be a “fibromyalgia specialist” in every area, there are professionals trained to help you manage your symptoms. Speak to your GP to adjust your care plan and find the right support. If you’re struggling or need more guidance, share here—there’s always someone ready to listen and help.👍🙏💪

[Africanmonkey in reply to ftorres18]

Thanks for all the support and information I am just now changing from Codine to another drug begining with M my memory now is awful but see someone next week. Yes it is in new areas of my body

[Dizzytwo]

Hi there, yes there are fibromyalgia clinics. Our lovely member went to one I believe it was in Guys and St Thomas hospital. But you do need a GP referral.

I am sure Dinky would be happy to share her experience with you. Maybe you could send her a private message .

Momo

[Broken4715]

I’ve been living with fibromyalgia, CRPS, and diabetes for nearly a decade. These conditions are complex, but I’ve found that some basic factors can really help manage the symptoms:

Staying Hydrated: Dehydration can contribute to muscle pain, and often you might not even realize you’re dehydrated. For me, this is more noticeable due to my diabetes, as I tend to sweat more. Drinking enough water throughout the day is crucial.

Light Movement and Stretching: Gentle activity and stretching can help alleviate stiffness and reduce pain over time. It’s important not to overdo it—just focus on what feels comfortable.

Using Heat Therapy: Heat pads on the back and neck can be incredibly soothing for muscle tension and pain relief.

Rapid Eye Movement (REM) Exercise: I was recently introduced to a simple but effective technique for stress relief and relaxation. This involves mimicking the natural rapid eye movement that happens during sleep. To try it, simply relax as much as you can, and with your eyes open or closed, flick them side to side for as long as you feel comfortable. It’s a great way to refocus and ease stress.

[Africanmonkey in reply to Broken4715]

OK thanks so much appreciated I will try and see what I can do

[desquinn Partner Volunteer FMAUK Trustee]

There are a couple of people that are advertised as fibromyalgia specialists and there are doctors / consultants that see a lot of fibromyalgia patients. Some are private and some are withing NHS clinics. Bath and Guys are two NHS and thefibroclinic (Dr Chris Jenner) which is private. Going private means that some treatments that are not standard may be offered.

However, the variable in this is always the patient. We come with our own random symptom generator unfortunately and it can be hard for our doctors to find something that helps.

Further thing, a doctor not being able to help us is not always a mark of their lack of experience, professionalism or ability. Sometimes the treatment cupboard is bare for us but may have options for others. This is why I am always keen to tell people not not refuse a treatment due to other peoples information or that it is in a particular class i.e. anti depressants. It may work for you where it did not for others.

[Africanmonkey]

Thanks for all that, so it gives me something to look ahead

[misspicky82]

As you start to wean down on the codeine you will start to feel it working more again as your tolerance has built up but as you wean down, your tolerance reduces. Then it starts to work again. Unless you want off this completely anyway

[Africanmonkey in reply to misspicky82]

My Dr and the pain clinic want me off it altogether as I was getting addicted to it

[misspicky82 in reply to Africanmonkey]

Ah I see, sorry. My GP started weaning me down bcoz they wanted me off it, just bcoz they are being pushed into getting patients off opiates, however my pain clinic wrote to my GP and said bcoz it is helping me t that they are happy for me to stay on it so I'm now not being weaned down any longer. I know about weaning down for a bit then getting my tolerance weakened again to be able to move back up on bad days and I think bcoz the pain clinic knew I understood how it works etc they agreed that I was able to manage. Don't get me wrong though, it's hard and I don't always manage to wean down much but I can do it enough to have those extra 2 again but I've never been able to move past 2 as it's very addictive and I've been on it a very long time. I think it's about knowing what to do/say and your end goal of if you want off it altogether. I just know that once you're completely off, you will have no chance of getting it again but unfortunately for me, it's the only thing that's ever really worked enough for me. Where are you up to with the weaning down and do you, yourself want to be off it altogether?

[Africanmonkey in reply to misspicky82]

Well I think I need it as a backup as Naproxen doesn't work that well for me. I was on 4 a day now down to 1 in the morning so I can get up and go to work as a carer. Sometimes I have to take 1 at night but that's for the osteoarthritis in my knees.

[misspicky82 in reply to Africanmonkey]

I can't take Naproxen or any other anti-inflammatory medicines and that's how I ended up on opiates. Mine was originally for lumbar spondylitis but it helps with the pains from Fibromyalgia. I was on 8 a day, my script is now 6 a day. Alot I know but I've been on it for many years, back at before they said opiates are no good for long term pain. If they are helping, if I was you I would just say to the pain clinic that now you've managed to step down, they are now working when you take an extra one and this helps you manage your pain to a point where it helps you do more around the house etc. They should only be taking you off them if they are not working. My pain clinic actually worked out what the amount of dihydrocodeine converts to actual morphine in the body and it's not a lot and that was their justification for keeping me on them. If you want to stay on them, this is that I would say and just make them aware that you understand the risks of addiction and you can manage to only take 1 a day on your better days, but that you have that room to manoeuvre on your worst days. Also explain how this is the only medication (codeine in your case) that has helped with your pain to enable you to manage day to day activities.

[Africanmonkey in reply to misspicky82]

Thanks I will take that on board

[MaggieSylvie]

One of the symptoms of FM is that the pain tends to move around.

[HyacinthBouquet1]

Hi. I am so sorry you have additional pain. I know how horrible the continually moving pain is as I am a fybro sufferer also. Ref. A Specialist. It depends where you live. There are two in London of which I am acquainted. One at Great Ormond Street and one at Dt Thomas's hospital.

I only found those quite by accident from the NHS website. It might be worth looking there to see if there is anything in your area. My GP is very happy to refer but has no ideas apart from the agreed medication.

Good luck finding somewhere.

[Africanmonkey in reply to HyacinthBouquet1]

OK thanks

[Hollygreen]

Hi, Am, this is a quick message. A prescribing MSK person is the best person to see for Fibromyalgia in my experience. Muscular Skeletal is known as MSK.