Thanks for all the comments on my first post. It was very helpful.
So I put in an e consult to make an appointment with doc for review of my PMR and pred dosage. I arrived at the surgery and discovered that I actually had an appointment with the physio, not the doc. So much for AI! 🙄
Anyway, we had a chat about my knees, and he decided after examining me that it is unlikely to be directly related to the pred and thinks more likely it is from kicking when I do breast stroke in the pool and is akin to an RSI. Therefore, he says, have a break from swimming, and I have been prescribed some exercises to strengthen the knee area and walking in the pool, instead of swimming.
The physio also pronounced that my PMR has gone and that I am suffering residual pain. When I quizzed him as to why he thought the PMR had gone and I said that I am down to 3mg pred and I am the same as I was pre pred, he couldn't really answer that.😳 I think it is because my shoulder involvement is less than they would expect, but I reminded him that I have a lot of difficulty in getting out of a chair and getting up and down the stairs because the muscle tightness in the hips, thighs and lower back. He's already ruled out the hips being due to osteo, in the past. Anyway, at least he didn't mention fibro. He did mention that he sees a lot of people with PMR and has also recommended some of the gym machines that should help me with my lower half. He said to go back and see him if I have any further questions.
Then I had to speak to someone in reception and point out that e consult doesn't work when you don't have a routine complaint and that I really need to speak to a doctor, so she made the appointment for me. Now I have an appointment next Friday with the doc that I prefer. He is the one who thought it was PMR from the start and has never mentioned fibro, so I have fingers crossed that it will go well. I specified not the grumpy rheumatologist as it didn't go well last time. The receptionist didn't bat an eye lid. Heard that before, I guess.
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Three separate HCPs have said the same thing. I'm not sure how well they listen sometimes. Nothing that I have ever said would indicate that it has gone, and I have been pretty clear on it being only the pred that controls my symptoms.
Well, except that I've lived inside this body for the last 65 years and I know what it feels like. I'll avoid mentioning the dreaded confirmation bias. oops! Too late!
He must have borrowed it from the rheumy who told me a couple of Februarys ago to stop taking pred because my PMR had gone. I guess it’s pass the crystal ball month 🙄.
Glad to hear you have a face to face appointment, how they expect to make decisions on these things without the proper physical and manual tests is beyond me.It's still worth discussing the possibility of Fibromyalgia with your GP even if the Physio didn't mention, they probably wouldn't .
People including doctors and physios aren't that knowledgeable about Fibro and how it can cause such pain and stiffness, or that you can have PMR, Oestoarthritis , Inflammatory Arthritis or RA and have Fibro at the same time and that treating both with conditions is necessary to reduce flares and improve your recovery. Fibromyalgia being a Neurological Pain condition which seldom improves with Pred whilst the others are inflammatory. There could be Autoimmune issues at the root of both.
It's worth requesting for them to do the Fibro checks at the appointment, even if that only means you can rule out Fibro properly as a cause for making you feel worse.
Have a look at the information on Fibromyalgia UK , and it might be an idea to print off the Fibro test check list to take to the appointment and ask if the GP would be happy to do it for you as you can't get to see an NHS Rheumatologist to diagnose or rule out Fibro anymore. It literally takes five minutes to test your pain levels , ask which quadrants are affected and do some pain pressure scores.
As I say , you can have PMR and Fibro at once , it isn't just that the symptoms of each can be very similar, and Fibromyalgia isn't a brush off diagnosis as it's often implied, in fact it's severity can be such that it is classed as a Disability and you can be entitled to Disability Benefits because of it.
Hope things improve with the Aqua walking and exercise. You can also try using slower crawl stroke legs with breast stroke arms which I find I sometimes need to do when my knee pain in flaring. Good luck , Bee
Thank you, Bee. I did think that I would have to swim crawl going forward, but hadn't thought of combining the two strokes. Normally I alternate to minimise the repetition. I really don't think I have fibro. Anything I read about it, doesn't sound like me, at all. it was ruled out right at the beginning by the first doc, and the physio was quite certain that my issues are not neurological. Plus, I am extremely responsive to pred and quite a low dose controls it. The subject of fibro only ever comes up when we get onto the subject of getting me off pred and then it goes off on a red herring, which isn't very helpful when I have other questions to ask.
Which is another good reason for requesting them to do the checks once and for all, if they rule out you can stamp them down when they bring it up again.They also seem to forget that even if your PMR has gone into remission that you might have also developed another condition like Reactive / Inflammatory Arthritis, or Severe types of Arthalgia that also respond to Pred and can be treated with it long term without doctors constantly trying to force patients to come off steroids entirely.
What fibro checks did they do, please? I’m interested to know, as an individual with fibro, PMR, osteoarthritis & the Dr thinks I have inflammatory arthritis! It sounds as if you gave a lot of pain which remains untreated…sounds just like my fibro (though I recently found a painkiller that offers me some relief)! I’ve never been offered physio for fibro, so I wouldn’t expect a physio to mention it!!
The painkiller I’m taking now isn’t prescribed for fibromyalgia…well, it wasn’t given to me for the years when it was my sole medical issue!! I suffer from Polymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Osteo Arthritis, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration, Plantar Fasciitis. I’ve also had 4 car crashes. So my pain relief is different from those offered for fibro. I was offered Pregabalin & Gabapentin for fibro pain relief. I believe you commented on my warning about side effects from these drugs. These drugs are taken safely by probably thousands of patients without a problem. I just feel people should be warned so they can look for signs of trouble & contact their doctor. I think you’ve had fibro for many years so you should have tried these, but your bio is incomplete & gives no history? You don’t mention fibro in your interests? I am lucky as my current pain patches are helping take the edge off my fibro problems, but they were not prescribed for it!! It doesn’t help with the fatigue or stiffness, though!! Suggest you visit your doctor & ask for an appointment at a pain clinic….of the Dr may prescribe some?? Good luck, it’s not a fun combination!
Thanks for your detailed reply, Pixix. I must update my bio! Have had FM for 14 years but always told nothing was available in the past. Will mention Pregabalin and Gabapentin when go for medicine review Friday. Fibro really is a different pain, isn't it! And the wretched thing moves around. All the best!
I need to update mine, too! But it’s really useful if you go to and answer a post, you can see what the person you are replying to, suffers from!! I think fibro is worse than PMR myself. People moan about pred every day…but for fibro there is no drug like it. Noth8ng gives you your life back, or stops the pain (unless you can tolerate Gabapentin, Pregabalin etc). The other drug I do find useful is amitryptylline. It’s an old fashioned anti depressant, but people take it at a completely different dosage & it helps relax muscles, & relieve pain that way. I take it at about 7pm, & it helps me to get off to sleep…yes, I know, it’s not perfect as I wake it pain 4 hours later! But that’s 4bhours sleep I didn’t get before I tried it! Consultant said I should double the dose, but I would have been too drousy to get up until lunchtime! People take it for other things, too, I’ve seen it mentioned here! Good luck, S x
Thank you, Jane. I've had so much contradictory advice and my last thread helped me get my thoughts straight and that helps. I feel a lot more confident in being able to keep the conversation on track now. The chat with the physio was helpful, at least.
honestly I think that it’s hard to find and answer when the blood test are normal , but your body is saying it feels bad . I don’t think they really have an explanation. It would appear that fibromyalgia is a reasonable explanation for those of us that continue with problems years on. What what to do about the prednisone when your body can’t cope without it !
I’m just starting to recover from what my physio believes to be knee bursitis. Very painful & quite debilitating for 10 weeks. Massage helped. I’m currently reducing from 7 to 6.5 after being on 7 for approx 4 months. It’s my 2nd attempt at reducing & I’ll be taking it very slowly. The bursitis was in both knees, very painful around the lower inside of each & also at the back. I read where 100% of PMR suffered bursitis at some point - reassuring as many gps seem to think PMR is a joint issue rather than a connective tissues problem.
I would be very cautious about a physio’s advice regarding PMR. It is such a sneaky condition and with careful use of prednisone you should have minimal pain and stiffness. I am taking my prednisone at night and have no pain or stiffness at all. It’s quite remarkable.
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