Is it Fibromyalgia?

[Jomaur]

I was diagnosed with PMR in January 2021 and started taking Prednisolone. The following November I fractured my humerus and while I was recovering began to experience pain in my lower back and legs to the extent that walking was very painful. I had an X-ray of my lumbar region which showed degenerative changes, my Prednisolone was increased but this had no effect on the pain and my GP did not feel the pain was due to PMR. I then saw an Orthopaedic surgeon privately and suspecting Spinal Stenosis he had an MRI of my back done but this didn’t show anything to account for the pain. He recommended physio. I then saw a physio but this didn’t really make any difference and as the waiting list to see a rheumatologist in our area is long I paid privately to see one. His diagnosis was that my PMR was under control and to continue to reduce my steroids, my GP had sent him my last blood test results. He said I had Myofascial Trigger Points and told me I had Fibromyalgia. His main advice was to swim three times a week, this was in December and most public pools are not that well heated! He also said I could try taking 2 Paracetomol 3 times a day for a month to see if it helped with the pain. Paracetomol does not have any effect on my pain.

I am reluctant to return to the Rheumatologist as I cannot really afford to pay for more consultations and really didn’t find him very helpful. My GP has finally agreed to refer me to the Pain Management Clinic at our local hospital where the waiting list is 10 months,When I asked him about pain relief he said that he supposed I could take Duloxetine but I could get addicted to it. At this point I decided it would be best not to pursue the subject. I am now paying for weekly soft tissue massage which does give some relief for a while but wondered if there is a more accurate way of diagnosing Fibromyalgia and if anyone can advise a way forward. My walking is very limited and I need to walk either with a stick or if shopping I use a shopping trolley..

[1499]

Hi Jomaur I am sorry you are having such a hard time at the moment. I am not sure what PMR is so must look that one up.

It is a shame you have to go private help. I am on 2 x 50mg Tramadol along with 2 x paracetamols and it does help the Fibro and my spondylitis and my back pain especially the lower back, There is medication you can get to help Fibromyalgia i.e. Amitriptyline which is normally a first they try you on which helped me years ago, then eventually Pregabalin which I took side effects with, and I believe some take Gabapentin which I believe is similar to Pregabalin as the work mainly on the nervous system? Fibromyalgia doesn't show up in xrays or scans that seems to be the reason why many GP's didn't believe many patients were suffering so badly and family and friends also.

I have chronic pain every day, as I also have damage in my knees so can't even walk to the local shop now. It is so painful and I have used a walking stick for a few years now. It is very frustrating and hard to accept if you have been a very active person. I too was referred to the Pain Clinic in 2017 as things were getting worse, but to be honest I honestly feel they did nothing for me. The family were worried about me and made me see a GP here in 2019 (I really hate bothering the Drs ) as I had moved to this area in 2017 and hadn't seen a GP. He advised as I was under the Pain Clinic he could do nothing for me so that was that!

When the pains have flared and I have been at my wits end I have phoned the clinic an odd time and asked if the Consultant who is such a lovely man could advise if there was anything I could do meantime to help get me over this bad period. I then got a letter 4 months later to attend for an appointment another 3/4 months away. When you are in so much pain during flare-ups you really want help asap. I then would write to him but got no reply and was last seen there in 2018. My eldest son told me weeks ago to forget about the pain clinic. It wasn't them that had started me on Tramadol it was the hospital when I was in with another condition in 2017 so I have never been tried on any medication or any other therapy by them i.e. acupuncture, massage, hydrotherapy or pain patches which I have heard other people say they use.

My friend a retired nursing sister visited one day when I was struggling and she asked what meds I was taking. I had told her contacting the pain clinic was a waste of time and she told me to try paracetamol. They do nothing for me at all, but she advised to take them along with my tramadol as they boost them. It was the first time in about 3/4 days that the pains subsided a wee bit more and I was able to get a sleep. I couldn't believe that something as simple as this had helped me yet the pain clinic who are supposed to be the experts in pain relief had never mentioned this.

The family recently advised me to see another GP again as they know things have got so much worse. I am unable to get out unless they come by car for me. Even showering and getting ready to go out anywhere can be exhausting and painful and I tend to live in my pyjamas quite a lot. I had asked the pain clinic one time if they could x-ray my spine and hips just to see what is going on now, or send me back to the hospital physio whom I saw in 2017 to see if I had arthritis or if there was something else going on with me. The physio had advised back then he wasn't putting me through x rays at the time, I don't know why? MRI on my knees showed damage behind my knee caps and worn cartilage and no knee op would help or physio, only just pain relief. He saw how I was walking with the knee and lower back pain especially, and advised my posture was bad because of the knee pain and that the fibromyalgia wasn't helping. It seems to involve more the soft fibrous tissue, muscles, ligaments, and nerves I believe the "Invisible Enemy" as it is known!!!

The only advise I got from the pain clinic was to - pace pace and pace myself. I think you are very wise getting regular massage. I bought a massager and use a tens machine at times, and hot water bottles I find help especially when I am in bed so much these days in pain, and especially during flare-ups which can be horrendous. I am a non swimmer but they say even getting into the water can really help? I think most of us Fibro patients have a cupboard at home like a chemist shop because we have bought and tried so many things from heat pads, CBD oil and all sorts of lotions and potions.

I finally phoned for a GP appointment and was told I would get a call at home 2 weeks later. I gave this young lady Dr chapter and verse about how I had no response over the years from the pain clinic regarding my condition getting worse. The GP spoke about the types of pains I have experienced over the years and the flare-ups and I felt she understood. All she could advise was I take 2 x Brufen anti-inflammatories 2 hours before going out anywhere along with my pain meds, and it may make me feel a bit more comfortable. Pain meds quite often don't touch fibromyalgia pain she advised which I knew about, and I think that is how many are on the 3 Fibro type meds I mentioned ,as it is mainly nerve pain.

I believe I have had Fibromyalgia since my late 30's as was getting electric shock pains in various places not knowing what was wrong with me and lots of muscle pain in various places having to take to bed and just buying over the counter cocodamols to get me through each day. It wasn't until 2010 I finally went to the GP and was diagnosed with fibro and chronic fatigue, I had no knee damage back then. We are all so different, some people can't take certain medications , so it is trial and error, and I hope if you get to the pain clinic which is a terribly long wait away for you, that something can be done to give you some relief.

Oddly enough I broke my humerous in 2012 but it healed fine after 4 months in a sling. There is the Fibro UK magazine you can buy or read online and various books on Fibromyalgia which may help you to understand the condition a bit more. Sorry for such a lengthy reply I feel I have given you my life story lol! I do hope you find the right treatment to make life a bit more comfortable for you. Many on this webpage will be able to give you more helpful advice I am sure as they understand what you are experiencing and have been a great help to me over the years when I have been at a low ebb. I have found that most Fibro sufferers also seem to have many other conditions like osteo arthritis etc. Maybe you should see a different GP meantime ,10 months is a long time to wait. I wish you well and hope you get some relief. Sending healing hugs x

[Jomaur in reply to 1499]

Thank you so much for your reply. It is awful that you have suffered so long and that you did not get any help from the pain clinic. This does seem to be a common story with a lot of PMR and Fibromyalgia sufferers. The GPs don’t always seem to know a lot about either condition yet are reluctant to refer you to someone who does and then when you see them they don’t seem to be a lot of help. I have just come home from having a massage which was very painful but has definitely loosened up my muscles to the extent that at the moment I have very little pain. I have been told to get back in touch with my GP if I haven’t heard from the Pain Clinic by 13th May so if that happens I will stand my ground and ask them what they are going to do to help me in the meantime.We are made to feel that we are asking them for the earth when all we are really asking for is the chance to live a less painful life. I do hope you can get help with your pain and with your knees and thank you again for replying.xx

[1499 in reply to Jomaur]

You are very welcome and I am pleased you will see the GP if you don't get word soon from the Pain Clinic. Who knows, maybe the one you will attend will be a great help to you? I said to my GP even touching my thighs arms top of chest etc., feels as if it black and blue with sore lumpy fibrous nodules been like this for years and she said that was fibro. I also suffer from the horrible restless arms and legs at times if I have overdone things and been on my legs a bit longer than normal but thankfully if I feel it happening I take my Tramadol right away, if not it can keep me away all night and my bed looks as if ten men have been fighting in it by morning lol!!! I forget to use my electric massager at times, it is a "Reviber Zen Physio" I got it from Amazon a couple of years ago. It is a bit heavy but it allows me to hold right down my spine area and I use on my thighs and the places where I have pain and tightness. It can be painful (just like having a proper massage) when it hits the knots or the nodules but it does help and I feel it definately helps to make the areas much less tender and more relaxed.

It may be worth having a wee look on amazon if they still sell them if you are interested though we all have different things that work for us, as fibro is such a weird condition. I read a book by a Dr Jacob Teitelbaum "Fatigue to Fantastic" years ago, who discovered he had fibromyalgia himself and had to leave studying at University for a long time not knowing like the rest of us what was causing the exhaustion and the weird pains and symptoms all over, but he was able to return eventually. Keep in touch and let me know how you get on, fingers crossed good luck x

[ANJI-UK in reply to 1499]

GABAPENTIN i take for nerve pain. It rips thru me like fire... i tried morphin patches different strength for pain but i just couldnt hack the pain and begged to go back on TRAMADOL i still had pain on it but at least it kept my pain 'steady' most the time. Antidepressants can help with muscle pain as they can relax muscles.

[Loobielu]

Gosh Jomaur you've been on a rollercoaster of diagnosis after diagnosis (some I've never even heard of!). Your head must be spinning. I've just seen a Pain Management Consultant privately (had to wait a whole 24hrs for an appointment! Unbelievably quick but then money talks hey 😏). He prescribed me Duloxetine. Ive been taking for 3 weeks now. It's helping with sleep and anxiety but not my pain. Maybe dose isn't high enough or I've not been taking them long enough - who knows, this all seems like witchcraft sometimes, not science 😏. He also recommended 3 prebiotics, a list of vitamins, daily walks and yoga X

[Jomaur in reply to Loobielu]

Thank you for your reply Loobielu. You are absolutely right I do feel my head is in a spin. Sometimes I doubt the rheumatologist’s diagnosis and think this must all be due to me Polymyalgia Rheumatica but if it was it woukd have been helped by increasing my steroids and that had no effect. This morning I had a massage, I didn’t have one last week as my massage therapist was away, so my first for a fortnight. It was really painful particularly when she massaged my arms but afterwards felt so much better. She is brilliant as she also is a qualified herbalist and takes a very holistic approach to all conditions. You are right when you say it’s more like witchcraft than science as there are so many weird and wonderful theories on what causes it and how to treat it. I have been told to contact my GP if I haven’t heard from the Pain Clinic by 13th May and that’s what I will do. The drs at our Practice have not offered any pain relief or even asked me how the pain is affecting my life and I feel it’s time I put my foot down and insisted they do something.

[Loobielu in reply to Jomaur]

I had the same experience re GP. Rhyumatologist diagnosed fibro rather too quickly for my liking. Discharged me with 10mg amitriptyline. I tried for 3 months but couldn't tolerate side effects. So I said to GP what else can I try and she said nothing hence me going private. I think they simply don't know hence the fumbling about and the many theories but this doesn't help us. The pain consultant said I have too much bone pain. My vit D test has come back at 65. Adequate is 50 and over 🤷. He's ringing me tomorrow about this result and next steps. I already take 1400ic vit D. Recommended 600 I think but consultant says you can take up to 3000 a day. Yep, got to be persistent with these Drs, be your own advocate and put your foot down but gosh it's exhausting 😏. Best of luck 🤞🤞

[Midori]

I wish there were a more accurate method of diagnosing Fibro too, but to the best of my knowledge there isn't.

It has so many crossovers with other conditions that it can be easily mistaken for one of the others, and there are still many GPs who still insist there is no such thing. Even Covid mimics it now, long Covid.

I'm beginning to think that ME/CFS, Fibro, Long Covid, and to an extent, MS, are all part of the same syndrome, but as I'm not a doctor I can't diagnose

Also, there is still no effective treatment, and we are just hung out to dry.

Cheers, Midori

[Saisa]

Hi Jomaur, I am so sorry that you are experiencing the horrible pain with fibromyalgia. Duloxetine helped me but unfortunately affects my blood pressure.

I have tried Pregabalin which helped me but after one year the side effects were horrible, I gained weight, I was getting depressed so no more that one. Also I tried ultracet but I could not stand the side effects. I don’t know if you have access to CBD. CBDthc 2:1 has saved my life. Now I am able to sleep, I am not so rigid, I am not depressed and the pain has decreased from 7-8 to 2-3 and sometimes no pain at all. Here in USA under the law with 0.34 thc is legal. Please let me know if you have any questions. Take care!☺️

[Karenwelshx]

Hi, I was diagnosed with pmr and then put on steriods (prednisolone) for 18th months then rheumatologist said its not pmr it fibromyalgia so I was put on duloxetine 30mg to start then 60mg now on 90mg plus 15/500 0f co cordimol 4x day. I think the 90mg definitely make pain ease but not gone. Some days are worse that others. I been on duloxetine since March 22 and they said it was the newest drug that been approved. It is anti dependent but also help with fibromyalgia. Side effects for me are not that bad for the first few months I felt sick,stomach cramps, headaches were worse than before but now I get the migraines and dry mouth but that comes and goes but that better than the awful pain of fibromyalgia without it duloxetine. Don't get me wrong there is still lots of daily things I struggle to do and won't probably do again.Q

[150120]

Hi Jomaur,

I trully understand what you are going through. I was also in too much pain for almost 20 years and now my Rheumatologis diagose me with fibromyalgia. Im on duloxetine (120mg) to be taken in the Morning and Amytripline (20mg) to be taken at night. Im still in alot of pain and Im taking co-codamol 30/500 and applying voltoral gel ( from my GP) practically all over my body. I tend to go for walks when the weather is good. The pain increases during cold weather . I tend to keep myself occupied and Im working full time even though I have inpingment of shoulders and pain around my neck and shoulder. Keeping myself busy help me to take my mind of the pain. Evenings I indulge myself with gardening or cooking. Its not worth the time seeing GP's as they will advise you that you have to live with it. After almost waiting for 6 years only now, Im with the pain Management. I know its a long waiting time. Its better to have a face to face appointments with them.