Struggle to get help for Fibro

[Jomaur]

I was diagnosed with Polymyalgia Rheumatica just over two years ago and am still taking steroids. In November 2021 I tripped and fell and fractured my humerus in 3 places and when I started Physio for this a few months later I noticed I was getting pain in my back. This pain grew worse over the next few months and gradually affected my legs as far down as my knees. I then found walking or standing for more than a few minutes painful. Firstly I thought it was my PMR but increasing my steroids didn’t help. I eventually managed to persuade my GP to send me for an XRay which didn’t show anything that wasn’t expected for my age, I am 75. I then saw a Physio with no improvement and a Chiropractor who tortured me! Receiving no help from my GP I saw an Orthopaedic consultant privately who was sure it was Spinal Stenosis as I could walk easier when I was pushing a shopping trolley but there was no sign of it on an MRI. He recommended physio and exercise such as Pilates. I started with a Physio but really wanted to know what my pain was as I was not getting better..The waiting list to see a Rheumatologist on the NHS where I live is at least 6 months so again I paid to see a Rheumatologist who said that I had Myofascial Triggers Points and that it was Fibromyalgia although he said it is now grouped under Chronic Pain Syndrome. He advised swimming and exercise. I have now joined a weekly Pilates classs run by a very experienced Physio and Pilates teacher who I have seen one to one for a few appointments and has told me to just join in as much as I feel able as she is aware of my problems. Yesterday I asked my GP about pain relief and his reply was that he coukd give me 2mg of Pregablin twice a day but to be careful as I could become addicted. When I asked about referral to a Pain Management Ckinic he was quite dismissive and said he woukd speak to them. I have contacted them and for routine appts there is a 10 month wait.

What I would like to ask and I apologise for the length of this post is how have other people accessed help with Fibro. I am in the Nirth West of England so probably only UKreplies would be relevant, I have read the NICE guidelines and there are recommended drugs and treatments- has everyone else found it so difficult?

[Cat00]

I was diagnosed essentially by myself, which was then later confirmed by the GP. It was over 10 years before they gave me any meds for it, none of which worked sadly. About 15 years later in I went to a pain clinic who at least believed me but every time I went each doctor disagreed with the diagnosis and gave me different suggestions for treatment.Long story short the doctors have mostly been terrible and none of the meds work so I find my own methods for "dealing" with it. My story is not uncommon sadly, but some people are very lucky and find helpful GPs. 10 month wait for a Rheumatologist isn't bad actually by current standards so it might be worth hanging on til then.

Part of the reason fibromyalgia is a chronic pain condition is because it doesn't really respond to pain medication. Incidentally my mother developed Polymyalgia which has now developed into fibromyalgia, she still on methotrexate.

[Jomaur in reply to Cat00]

Thank you for your reply. Incidentally it is a 10month wait for a Pain Management Clinic appt I saw the Rheumatologist privately but can’t really afford to continue with him. The main reason for seeing him was to get a diagnosis of my pain as I still wasn’t sure whether or not it was due to my PMR. I would rather not go on medication for Fibro if there are other ways of dealing with the pain. I have started a Pilates class, my walking is very limited due to the pain but I am attempting short walks albeit with a walking stick and when the weather warns up I aim to start swimming.Indoor pools in the UK are never that warm! Any other tips would be really welcome.

[Cat00 in reply to Jomaur]

Part of the problem with Polymyalgia is the meds are necessary but also bad for you. My mother and I both have Osteoporosis and Osteopenia and the various meds for Polymyalgia are bad for that too so it's not ideal.I do a lot of exercise, it's the only thing that helps me. Swimming keeps me sane....relatively sane at least.

I'm hypermobile and I don't have good proprioception so I do kung fu three times a week, or you could take dance classes. I've broken my ankles wrists a few times. The pain clinic really encouraged me to do as much exercise as I could, especially since I'm I can't take painkillers more than 8 days a month bc I have chronic migraines. Generally they will suggest mindfulness and exercise, maybe antidepressants and discourage the use of opiods and painkillers.

[Jomaur in reply to Cat00]

Yes I know the steroids do as much or more harm than the PMR but are a necessary evil. I am now down to 5.5mg daily and am reducing .5 every 4 weeks. I have recently had a Dexa scan and am in the normal range. I am glad you find exercise helps as although in pain I would rather try and be as active as possible and really want to able to walk more as this is the main problem with my pain. I occasionally take paracetomol as because of my high BP I can’t take Ibuprofen but tbh they don’t really have any effect. This is such a strange condition and it seems you have to work out your own way of managing as you have done as there is really no “one size fits all” solution.

[Cat00 in reply to Jomaur]

The doctors told my mum the inflammation itself was damaging her tissues. Then of course Covid comes along and she is immuno suppressed, so we all worried about her all the time.Do you know I can do HIT classes and tough cardio classes but going up and down stairs cripples me! My legs get very stiff and sore, I'm usually in a lot of pain during the warm-up and it's only when all the blood is moving that I can feel almost normal. Often I'm good for a couple of hours at least before everything starts to tighten up again. I'm very dependant on the gym emotionally, it feels good to not be loosing strength and preserving my bone density too. I go during the day so I'm not with the mega young mega fit people bc they're all at work.

[lesley2015]

Hi,

I have PMR/GCA but was diagnosed with fibromyalgia about 4 years ago.

I take Amitriptyline- 30 mgs. Helps with my sleeping too. I started on 5mg and gradually built up, it helps me function physically but it can make me a bit sleepy if taken too late in the evening.

Hope you find something that helps. Best wishes.