Advice please

[Emk68]

Hi, I was diagnosed with fibromyalgia in June 2018, the rheumatologist told G.P to add medication and refer me to a pain management clinic, I’m still waiting. My pain just keeps getting worse to the point of ending up in tears it literally makes me feel sick and stops me in my tracks. I have basically given up on my G.P because I’m just getting nowhere, I’m on Amitriptyline and have been for about 2-3 years it doesn’t touch the pain I also take ibuprofen and paracetamol, I’ve been on gabapentin that didn’t work either. I’m on the clinically vulnerable list because of Covid-19. I need something to ease the pain any suggestions to what I can ask my g.p for? Thanks

[allanah]

Hi I posted a similar question last night, I hope we get some replies x

[Fizzwizz35]

I’m in a similar position, did the GP refer you to the rheumatologist? My GP is useless and like you I’m in so much pain and nothing is touching it, it’s getting worse not better.

[allanah in reply to Fizzwizz35]

Yes the rheumy said the bloods were only slightly high but thought it was fibro and would send her to a fibro clinic. Then covid hit and shes very sore and tired

[Emk68 in reply to Fizzwizz35]

My GP referred me

[Nelly_82]

Hi Emk, I was diagnosed with Fibro back in 2014, I have had similar problems regarding pain management. I take Tramadol, Paracetamol and Pregabalin and unfortunately they provide very little relief. I am in Greater Manchester and have been awaiting an appointment from the pain team for 2 years. My mum also has Fibromyalgia and when seen by the pain consultant was given steroid injections in several trigger points in her back. This did provide some relief for around 12 months. It would be important to find out where your worst pain is to try and support you a bit better.

[Lovecavatese]

Hi, yes I'm also waiting for the pain team and an injection in my neck, its been about 2 years. I am on a second antidepressant, it was paroxitine but today I've switched to duloxitine. I'm in alot of pain, everywhere, I think I'm losing use of my legs. So for your knowledge, im on 20mg Duloxetine, 600mg pregabalin, Amitriptiline 20mg . I can up my dose of Amitriptilinr by 10 more and double my dose of Duloxetine but I'm waiting for the Duloxetine to build up in my system. I also have Codydramol if I want it, but codeine is v bad for me. Sleep affects me massively. X

[Nelly_82 in reply to Lovecavatese]

Duloxetine can be increased to 120mg and It did help me. If the Duloxetine doesn't work ask your GP to increase it.

[Ani7 in reply to Nelly_82]

Hi Duloxetine did help for first few days. But then make me sick. They had increased the amount but it just gets worst. I am having 60ml back to original but still sick and get worse. I think I will stop it. After speak to my doctors.

[LoneEra]

Oh, this sounds horrid. You can go back to your original rheumatologist (email addresses of secretaries are usually available on the hospital’s website) and explain the situation. Say that your current meds are not working and you need something new. Ask them to liaise with your GP.

Or you can step things up with your GP. If you mention the impact on your mental health of living in constant pain, they sometimes pay more attention.

There are various other meds you could try - pregabalin, for example or trazodone. Tramadol can also be helpful, although some people have strong views about it. Personally, I find it invaluable. You can also ask your GP for a physiotherapy referral.

I will give a word of caution about the pain management clinic. When I went, I was prescribed capsaicin cream and 6 sessions of Tai Chi. It was hardly what I was expecting. I wanted life changing help - I didn’t get it there!! I came away in tears and felt so let down after such a long wait.

What are you doing at home to manage your pain yourself? Asking in case there are any other tips I can give! Xx

[stevebran in reply to LoneEra]

Hi LoneEra. I was diognosed with Chronic Lymphocytic Leukaemia in 2015 followed by a Fibromyalgia diagnosis. I have had a similar experience with the Pain Clinic down here in Dorset. A long wait for a telephone appointment ( no in person appointments due to the COVID-19) only to be told that Fibromyalgia excludes me from the clinic, and if I were to be admitted all they can offer is CBT by phone. So disappointed. In the mean time my stiffness and pain gets worse and has migrated down my body to the point that I struggle to walk and doing something as simple as tying my boots or picking something off the floor ( we have 2 dogs! ) is very painful. Often I will fall over when attempting this, most embarrassing, especially when getting things from the bottom shelf of the supermarket, and have to get up by going from sitting to kneeling and pushing myself up with arm strength as my hips/legs/knees/ankles have no strength and are very stiff and painful. It all started with neck stiffness about a year ago

My GP requested an appointment with Rheumatology as my pain is so much worse than when I was first diagnosed and affecting so much more of my life but this was triaged by the hospital and instead was offered an X-ray on my hips (nothing found) and an assessment of my spine by a physiotherapist later on this week which I again expect to be ruled out as a cause. Hopefully they will let me see the Rheumatologist then, although who knows what state I will be in then.

I am currently on 30mg Amitriptyline nightly and co-codemol for when the pain is too much which I am wary of as my Dad became addicted to them with his long term illness so only use as a last resort.

Good luck with your health journey and I hope you can find a way to reduce your symptoms and live a proper fulfilling life, free from pain.

Love and strength

Steve

[LoneEra in reply to stevebran]

Oh, Steve. Sounds like you are being put through the wringer with all that. My heart goes out to you. Can't believe you've had such a run around with the pain clinic and the rheumatologist either. It's really depressing when you're pushed from pillar to post and there are such long waiting lists in between.

I've just signed up for a research study (on the FMA website) into 'spirituality and Fibro pain' - it's more about 'wellbeing' through mediation and doing things you love than actual 'spirituality'. But I thought it might be good for me. Here's the link if you fancy giving it a go:

fmauk.org/latest-news-mainm...

Lots of love to you too xx

P.S. What kind if dogs do you have? I'm forever picking things up off the floor after my border collie x standard poodle. He's a whirlwind!

[stevebran in reply to LoneEra]

Hi LoneEra. Thanks so much for your kind words. Sadly I don’t think my experience is that unusual as you probably know yourself.

Thanks also for the link I shall definitely have a look. I have got out of the habit of meditation and feel it would help a lot.

We have 2 dogs, a Jack Russell x Beagle 11 yrs old and a Pug 7 yrs ish. Both a handful but they do get you out.

Love, Steve xx

[Moana26 in reply to stevebran]

Hello

I am new to this page but your post could be my post and although I have zero advice I wanted to say I sympathise .

I am awaiting a neurology appointment

this week as in the last year but more so last 4 months, gone from being a fit mid 40 something who walked at least an hour a day to hardly able to move limbs and if I do it’s so painful. I put off the doctors for a while putting it down to older age, lockdown and not doing as much but when the final push. To do something was when I dropped something on the floor, managed to get down but had no strength in my legs to get back up so had to go on all fours and pull myself up. Which hurt so much. It was scary

I also have had neck pain/ right shoulder pain for many years due to tensions/ bad posture but never has it affected whole Body.

I have no answers and hoping to get some this week. I googled pain all over and loss of strength in legs and this page is what it led to. I never guessed or really knew much about fibro..

I hope you get the right treatment

[redmaple-5]

Hi, I am under my pain management team and was given a Tens machine to use. I have found it another useful tool to have in my arsenal of pain relievers. 😊

[Hidden]

Hi, I found amitriptyline only helped me to sleep a bit better. I have tried duloxetine twice and they didn't help at all.

I currently take naproxen but these can be harsh on the stomach so I take omeprazole with them. I find naproxen does ease the pain and it reduces inflammation too.

I also take diazepam for chronic anxiety. It helps muscles relax and also helps with my pain. Most GP’S won’t prescribe this as you can become addicted but I would definitely ask your doctor about them. I use these as a PRN so I do only take them when I’m extremely anxious but I have noticed when I do take a couple my pain is less severe. I am starting to believe muscle relaxers really help fibromyalgia pain.

Pain management i would find the number and give them a call. I wasn’t waiting long before I got a call. I haven’t been seen yet. I have to attend 3 virtual meetings first then I will get a face to face appointment.

[Thatsewingbird]

I'm prescribed dihydrocodeine as well as Gabapentin. Obviously, dihydrocodeine is not really something you take long term as it's addictive but it helps greatly. I just take it when I can't bear the pain anymore.

[Ani7]

Hi, you are right I have same things nothing works. None of that medicine work at all. I am having deloxiten 60ml it did at first few days and stop. Pain is different and time to time increase in my different part of body. Some time my one hand is doesn’t work as well as both legs. Some time both hands and legs. Completely paralysed. I always ask my daughter to sit on my different part of the body to release at least some pain. Some time specialty middle of night time I have pain then she put lawnmower on my legs with extra blanket for 3/4 hours it does help a bit. And sometimes I asked her to walk on my full body it does reduce pain for at least little while. I think I will give up meds. Because it’s no point to having them. Specially when I know that none of the meds work . Even though I was hospitalised for moth they gave me Morphine for more than 8 months. It’s make me dizzy but didn’t work at all. I have lots of nasty discharge from my both feet too. Just had surgery. Hope it will help. Hope we all get better soon love.Take good care and look after yourself hun

[spzgirl51]

Hello Emk68 ,I have fibro and rheumatoid arthritis and other health issues. I can't work out how to stop this post being underlined either. Sorry!

I am in the UK. I found lots of information on fibromyalgia pain management and control online at university of Michigan fibromyalgia pages.

They said they also run seminars for patients and families with chronic pain condition which are available on youtube?

I haven't watched any of those myself?

They say information is power?

So you might be able to find different avenues to help yourself "self manage " your pain and feel more enabled.?

For myself, I try the distraction method? Which has its limits? And weirdly, stress and sudden weather change can ramp up my fibromyalgia pain volume control.

It seems counter intuitive, but pain medications may not be as effective as we expect them to be?

I am definitely no expert but to me fibromyalgia is such an individual thing? There is no one size fits all approach. Try and find something that makes you happy and try not to worry?

( But what do I know as I can't yet switch off the underlying feature?)

Best wishes

You should consider asking for a telephone referral with your GP as it in humane to be left in pain without support. You need this especially in the current climate and covid restrictions as added stress can equate to more pain ?

(I managed to turn off the underscore feature. I am very clumsy with a touch screen .... So it may not last. Lol!)

Take care xx

[Janpan7]

I've found the thing that helps me most is heat. I've bought a wrap around wheat pack for my neck, and another for my back if I need to stand up in the kitchen for a while. I also take hot water bottle and cushion everywhere I go, including pubs when they are open.😂 if the pain starts to get very bad, Always sit down, even if you are outside, find a bench or a wall. Pacing is very important, and it does help once you get the correct mindset. I hope you find some relief.xx

[Paulainpoole]

Hi sorry to hear you're having problems with you GP I have had a nightmare with mine she took my tramadol down from 8 per day to 1 a day and tried to stop my pregablin I am now on 4 Tramadol pd and lower dose of pregablin I ended up having to put a complaint in at the surgery and also sent my GP some research and information on fibro hoping she would at least understand more - she doesn't though I also take amitryptiline but she cut that from 75 to 25 so don't get any help from that anymore i have also waited 2 years for the pain clinic to contact me and now they cannot deal with me due to coving My GP did say she put the referral into the pain clinic 2 years ago but speaking on the phone to the they hadn't received anything till last month sorry I'm dragging this on but if it helps its worth it I also take Duloxetine which I find helpful good luck be strong and stand your ground

[spzgirl51]

Hello again Emk68 ,Do you have a good relationship with your GP? Is there another doctor at your practice that may have better listening skills? Each doctor has their preferred treatment paths and some are more flexible and willing to engaged than others?

Good luck x

[Emk68 in reply to spzgirl51]

Hi spzgirl51, when I first started to go to my doctors in relation to fibromyalgia I had young student doctors all female that were really good but in less than 2 years I had seen about 5 as they left the practice. The doctor I see now is ok ish but I’ve only seen him a couple of times and since covid made an appearance I havnt been once it has settled down I will see how I get on with him x

[Emk68]

Thank you all for your comments, I keep reading through them to take the information in. X

[Liseeloo12]

Good morning emk, I hope you dont mind me jumping in on this chat?...Iv been struggling myself with fibro for over 2yrs now

😪 I was a care free workaholic fit young lady, and over the course of a few months found doing normal things a real struggle...every day I would wake up and be in excruciating pain. I really couldn't understand and still dont understand why.I suffer with pain in my knees and hips, pain in between my shoulder blades and continuous stiff whip lash pain in my neck. And the chest pain is so horrible I feel like iv been stamped on..

At first i was going to the doctor's and i was sure she was looking at me like are you for real, can one person have all these issues at the same time..

And i was constantly fobbed off to another doctor or another hospital appointment, I was finally told I have fibromyalgia.. I thought get a diagnosis would actually help me and get the treatment I needed, but actually I feel worse now knowing than not..

I have had everything from codeine, to dolixitien, gabapentin and morphine to swallowing paracetamols like there smarties, and still I'm in constant pain, I'm awaiting the pain clinic but due to the pandemic which I'm so understanding off I have been on the list for a yr,

I have found haveing this so hard, as it's an invisible ilness and dont know anyone that can relate to the way I'm feeling, I guess I'm just reaching out for maybe to talk to others in the same position, as I feel so alone, for advice, help on anything that may help my condition I'm just willing to try anything, to get myself and my life back on track..

I hope people dont mind me commenting on here, I would be so greatful for any feedback.