From PMR to Rheumatoid Arthritis to Fibromyalgia

[Jax1962]

Hello 🤗 I've been on this inflammatory road since the end of 2018. Was diagnosed with PMR initially but with treatment failing and crap consultants, after making a complaint, I saw a wonderful consultant who diagnosed Rheumatoid Arthritis and finally found an injection that reduced my inflammatory markers from over 100 to almost 0....You would hope that closes my story but it didn't. Even though I no longer have inflammation, my body is wracked with pain every day. My rheumatology nurse gave me a leaflet on fibromyalgia in November to read and I tick all the symptoms. I haven't been officially diagnosed other than my GP mentioning fibromyalgia when discussing my pain. I don't need to tell you how awful it feels as you all suffer the same. I take the maximum dose 30mg cocodamol and watch the clock for the 4 hours to be up so I can take more. I generally go to sleep at about 4am and wake at about 11am sometimes midday! I've joined the group to find out about your pain relief? and feel that I'm not alone in feeling lazy, overweight, older than my years and generally shut off from the world...going out gives pain, driving gives pain, walking gives pain ....other than that I'm fine 🤣 Merry Christmas everyone 🎄

[Badbessie]

I have a number of problems and like you my fibromyalgia was diagnosed after other conditions could not be responsible for my pain.Medications can help but a more holistic approach is often needed for pain issues. My advice would be to ask your GP for a referral to the pain clinic with the hope of getting on a pain management program.

I attended one for one day a week for 10 weeks which included one assessment day and a follow up assessment day a few months after the course.

The various specialists looked at everything from my medications and how I used them to exercises I could manage and changing my mindset on how I managed various pain related problems.

People told me my medications would be reduced etc but I actually came off the program with a stronger and longer acting medications.

[Jax1962 in reply to Badbessie]

Thank you 😊.....I will talk to my GP about being referred to a pain clinic. Sounds like a great idea. I would love a long soak in the bath but once in I can't get out. Need to lose weight that's another target for 2024. Take care xx

[Yassytina FMA UK Volunteer]

Hello, yes living with pain day too day is beyond wearing 🙁like Badbessie has said ask your doctor too refer you too a pain clinic, but in the meantime it sounds like you are in need of your doctor too trial you on something that will dull your awful pain,(we do say here trial and error until we find something that works for the individual. The only thing that relaxes my my body is a soak for at least 20 mins in my bath, I use Epsom salts as they say the magnesium helps. Pacing is key and sometimes if you doze off for some much needed sleep go with it. For some of us the winter months seem too cause more pain and I do find I spend a lot of time at home for this reason , I have arthritis as well , very common and what with Fibro the two together can be very painful. I have a heavier quilt on my bed at the moment and the extra weight and warmth is helping me with sleep. Take care .

[Jax1962 in reply to Yassytina]

Thank you 😊. I've just written to Badbessie saying I would love a soak in the bath but once in I can't get out. I will see my GP in the new Year and discuss pain relief and the pain clinic. I've been on tramadol, morphine patches and now cocodamol but looking on here there are definitely others to explore. Take care xx

[oldwomaninpain in reply to Jax1962]

I bought something like this for my mother ages ago, it gets up to top of bath level so she could sit and swivel her legs into bath and vice versa getting out livingmadeeasy.org.uk/produ...

not cheap but a life saver for me and her other carers

[Moonstonebrightpoet in reply to oldwomaninpain]

I’ve got a bath cushion with a compressor that does that so you raise it to the level of the top of the bath, swivel yourself around and lower yourself into the water and then at the end bring yourself up to the top of the bath bargain it’s brilliant!

In the new year call social services and ask to have a home assessment with an OT )Occupational therapy) and they will assess where you need help on the home like handrails, bath cushions, riser recliner chairs etc and then they can get them for you.

LGood luck !

[Jax1962 in reply to oldwomaninpain]

Thank you 😊 x

[Jax1962 in reply to oldwomaninpain]

Thank you 😊 xx

[CheetieCat]

Same for me, I struggle getting out the bath, don't have enough strength in my hands and wrists! Have always managed it but the thought of being stuck puts you right off doesn't it. I have this image in my head of rescue services trying to prize me out! Noo... Thank You! 😳

I swear by magnesium spray, lotion or oil, find it really helps my muscles. Unfortunately it doesn't work for everyone but I think it's always worth a try. Hot & Cold sprays. Weighted blankets, heated blankets + throws.

Movement is a big one, for me anyway. Simple stretching exercises little & often throughout the day, a few before you even attempt getting out of bed can make a big difference. There's loads freely available online.

I would suggest you speak to your GP regarding your current pain relief. There is probably more that they could offer you. It is a bit of trial & error to get the 'cocktail' that works for you.

[Jax1962 in reply to CheetieCat]

Thank you 😊 x

[Sunshine-Smile]

I feel like I’m in a very similar situation to you, but a little further along my journey. I’m about to start my course with the pain management clinic and I’m hopeful about it due to hearing only good things. I’m also in a position where I wouldn’t even consider getting in the bath as I don’t think I’d be able to get out again and I also have a plan to lose weight next year. In fact, reading your posts does make me feel that they could have been written by me!

The thing I find most helpful is my heated blanket. It is awesome. It makes the stretches I do in bed easier and reduces my pain to quite tolerable levels. I also do mindfulness and positive thinking exercises which help me keep focused on the things I can do and enjoy rather than getting sucked into the pit of what I’ve lost.

I hope you find something that helps you.

Merry Christmas. x

[Jax1962 in reply to Sunshine-Smile]

Thank you 😊 xx

[angien70]

Same here ha.

[Whiteclouds]

hello so sorry to hear you are in pain I too have been told ihave fibromyalgia after all other routes of diagnoses had been exhausted and the pain clinic was constantly in the GP conversation but never happened instead I was given a leaflet to read and sent to a chat group which I attended but did not help as on returning home I was in such pain I had to stay in bed feeling like my entire body was exploding in pain. I take magnesium strong pain killers and rub voltarol into the painful areas I also take Epsom salt baths. I wish you success with your treatment as I know this condition is not well understood by the medical profession and needs more research. Merry Christmas and a happy new year x

[Mooster]

I relate to a lot of what you said, Jax. I feel older than my years and shut off from the world. Am wondering how much longer I will be able to drive. At 54, my life is already so limited. I also have a similar sleep pattern to you, PMR means I don't even get started until the afternoon. I do wonder sometimes how I will cope if this is now just how life will be for me. I try to meditate, be thankful etc but life is so different for me now compared to how it once was. Anyway, just saying hello.

[fibo]

Hi, best thing I find is rest, Meditation, regular sleep and wake time, it takes a long time to work, I sorted my sleep out back in 2020 with being in lockdown I was sleeping in most of the day and not getting dressed and then not being able to sleep at night and being in so much pain. So I put an alarm clock on and set in for a bit earlier, bit earlier till I got back to waking up at a sensible time which is 9am for me, so the alarm go off every day at 9am and I gradually get myself together go down for breakfast at 10ish.

I don't take a lot of pain medication I use a Tens machine, I don't go out much, but not in a lot of pain as a rule take care hope that makes sense