18 months ago when I thought I still had PMR Rheumie couldn't understand why I was still in pain and deathly faitigue while on I think 6 mg. I had a Pet scan...it showed no inflammation. Rheumie rung me up and asked if I had any relatives with Fibromyalgia..( who hasn't) yes my niece......he said that is what you have wrong with you now......he said to ring if necessary but GPs' deal with it..(like hell)......I have never had raised CRP....so can't see what I can prove either way.....just know this pain and fatigue is is unbearable....paracetamol dosen't help much. Another Rheumie probaby won't even see me if Fibro comes up on the screen....Thanks everyone for your replies.....if you still have suggestions like running round the garden screaming (oh forgot can hardly walk let alone run!)....
My background to explain last 18 months to you wo... - PMRGCAuk
My background to explain last 18 months to you wonderful people who replied me...
I really sympathise. I had the deadly fatigue at 5mg, I was like a wet blanket and had trouble lifting my arm to scratch my nose even I was so tired! In the end I did increase to 6mg and felt a lot better and stayed there for around three months. I do wish doctors knew a bit more about PMR and fibro. I have an orthopaedic surgeon friend who muddles them both up. I suspect he doesn’t actually know anything about either of them!
That's not good is it!....This is a ridiculous battle that we have to fight!...hope you keep staying better on 6 mg....
I'm sorry and I empathize.Trouble is that you can have both.
Fibro can be one of the stress triggers that led to PMR , and PMR and it's flares can eventually cause Fibro to develop as the body and nerves become more sensitive to pain stimuli and damage occurs.
Both conditions require different treatment.
Steroids and steroids soarers do not improve Fibro except for in some rare cases.
Neurological medications are required.
Both need to be controlled and managed properly if you have them at the same time because they are both Divas and when one flares up it will inevitably cause the other to scream for attention too.
You are right , in the UK it is virtually impossible to get seen by a Rheumatologist for Fibromyalgia, most refuse to see new patients whether they need to diagnose them or not. But, if you are already being treated for another Rheumatology condition by a Rheumatologist it is their responsibility to assess you properly and diagnose Fibro and they should also be recommending treatments for the Fibro to you and referring you to the Pain Clinic and Physiotherapy for Chronic Pain management rehab.
So a firm but polite reminder of these NHS treatment guidelines to your Rheumatologist is in order.
The Pain Clinic , Rheumatology or the GP should prescribe you appropriate neurological pain medications to try. These can take some time to be effective and should be started at low doses and titrated up. Often Fibro medications work better at low doses in combination alongside paracetamol and gentle exercise.
Unlike PMR, Fibro is usually a life time condition which requires long term pacing , self care management and medication .
You are seldom 100% pain free with Fibromyalgia.
85% pain managed whilst having quality of life doing well paced everyday activity is what is classed as successful.
Fibromyalgia can also cause lots of autonomic nervous system symptoms similar to those experienced with adrenal insufficiency or high dose steroids, including peripheral neuropathy, restless legs , fatigue , brain fog , poor temperature control, difficulty thinking, flushes , exercise intolerance, cardiac symptoms, digestive problems including malabsorption and vitamin insufficiency, headaches , mental health problems and complex pain.
Fibromyalgia is not given the attention or respect it deserves , sadly, It's a serious condition of the neurological system and breakdown of messaging between the body and brain.
Unfortunately if you have Fibromyalgia alongside PMR pain management is complex and pain can continue to worsen despite increases in steroids.
The Stress and Pain caused by Fibro can increase tension and inflammation and trigger a PMR flare
The intensity of the pain experienced during a PMR flare is also worse if the Fibromyalgia is not being treated because the neurological pain response is also triggered and heightened.
Sadly , people whom have both PMR and Fibro seldom have a day that is pain free or without stiffness, Keeping a daily diary , especially once you try Fibro treatments is really important to be able to learn the differences between the pain caused by each condition and which triggers to avoid to stop flares for them both. It also helps to have this to prove to your doctor or specialist that the pain flare you might need a medication increase for us PMR rather than Fibro or vice versa so you can get the the proper care you need from doctors whom are usually less knowledgeable about PMR or Fibro than you are.
After the PMR is in remission and you are steroid free you won't necessarily be free of Fibro even as your body recovers and that condition would still require medication and self care.
It's another big learning curve and will involve some battles and many deep breaths and bitten lips before you get what you need as memory serves, I feel for you as I can remember what it was like to be there , hugs , Bee
But the crackers point is that at 5mg she is practically comatose. At 7mg she can do things. But they aren't interested because pred is "so dangerous". They are treating an image - not the patient in front of them.
That's the thing that makes me wish we were allowed to go to appointments with a sledgehammer.If it's Fibro and PMR , common sense and some basic experience of treating the conditions would err on the side of making cautious treatment changes.
Get the patient at the steroids dose that the PMR pain is managed during normal but sensibly paced activity.
Complete the Fibromyalgia assessment.
Then trial the Fibro medications and self care whilst the patient continued on the steroids dose that manages the PMR.
Observe which Fibro treatment brought more pain management and lower pain scores.
Then attempt the very slow reduction of the steroids potentially increasing the Fibro medications to reduce the risk of a Fibro flare to the change in body chemistry.
Each step down in steroids could require a short or long term increase in the Fibro medication.
If everything flares like crazy even without inflammatory markers whilst doing the same level of daily activity they should accept that the PMR is still active and stop the taper or consider biologic or steroids spares before trying the taper again.
Monitor other potential causes for the poor response to treatment like nutrient Insufficiency, poor absorption of medications , thyroid , adrenal Insufficiency to rule out things that are increasing problems in symptom improvement.
The trouble with having both of these conditions, or RA with PMR or Fibro, or OA with Fibro or PMR is that the causes and presentation of pain is complex. It's virtually impossible to be sure which thing is the dominant cause of the new pain flare and pain management needs to be carefully and slowly changed , There is no either this or that , black and white solution.
The trouble with most Rheumatologists I have ever met is that they can't cope with complex cases.
They seem incapable of understanding that these coexisting conditions don't always have an
A+B = Cure by n answer.
They only seem to be willing to look at the simplest patients and conditions with the simplest solutions and hate treating anybody that can't just be diagnosed or "cured" easily given standard treatments before being shoved out of the door.
Until Rheumatologists accept that it isn't a slight on their professionalism to admit that many of the conditions they treat may need lifetime care or ongoing treatment changes nobody is really going to get the care that best fits their needs.
Rheumatologists seem to be the worst Specialists from my experience for trying to shove patients back on a GPs books before a real treatment plan or complete diagnosis has been sorted out.
( And let's face it, now I'm also being seen by Urology I've basically had experience of being treated by every department in the hospital!)
Plus , you will never get the level of monitoring and supervision required until GPs receive better training to help manage these conditions between Rheumatology appointments on the NHS.
And going private isn't a guarantee for the right help either unless you are lucky enough to be able to see a doctor with real experience of treating these conditions, singularly, or in combination.
Money or time doesn't solve this situation without better knowledge .
Absolutely!!! It is called empiric titration - ignore the bloods and numbers. look at the patient in front of you and TREAT THEM!!!! The patient is almost certainly not going to be perfectly pain-free but they can get to a pretty good status compared with their worst. I must have one of the best rheumies - I need Actemra and 7mg pred and I'm stable. That is what he is interested in,
Hang on to your Rheumie!
My rheumy is the same. Keeps me on 7.5mg so I don't have a flare. I don't always agree with him but at least I don't have to fight him with regard to my steroid dosage. He has about 200 patients with auto immune issues and I bet he keeps them all on 7.5mg!! My mother had PMR, and then several years later she had Fibromyalgia which never did go away. As I seem to have inherited most of the health issues that she had, I'm really keeping my fingers crossed that I don't get Fibro.
Wow!!! 100% agree 👏👏👏👏xx
Spot on re rheumatologists only wanting to treat the easy clear cut cases, you would think the challenge of complex cases would appeal as finding a successful treatment regime would be a feather in their hat surely not mention the joy of providing better QOL to sufferers.
As soon as Rheumie said Fibromyalgia I was prescribed Duloxitine, Gabapenton, Pregabalin, couldn’t tolerate any of them. Have often read they are not tolerated by many people. . Was hoping they would be the answer and then eventually get off steroids, and battle on, but no. There is no pain free days but upping pred makes it manageable. Thanks for your input.
Were they all began at high doses? I couldn't tolerate any of them as a high dose but I take Duloxetine and Pregabablin at the lowest dose possible alongside paracetamol , I can tolerate it without becoming a zombie and it helps.
I take a daily antihistamine which is also helpful.
The majority of pain relief I get from Fibro is from pacing my activity carefully, avoiding triggers ( or adapting things to reduce their trigger effect) gentle isometric exercises , increasing my intake of vitamins and minerals and hydration, Hydrotherapy , medical manipulation massage, basically controlling my other health conditions ......so in your case getting enough medication to control your PMR pain would be a start!
What an amazing and brilliant assessment of fibromyalgia. My sister-in-law was a sufferer but sadly was mostly treated as fantasising. I feel even more sorry for her now.
Hello, all of your comments have been so well detailed. I think I have fibromyalgia as well as polymyalgia. But when I mention this to a doctor they brush it aside and just say keep reducing the pred. I have decided to not bother to make appointments anymore and get on with it! I saw a rheumatologist quite a while ago who agreed it was polymyalgia but have been dismissed now from his patient list. On the outside I look very well, am very stoic and get on with things. I think that’s why he probably thought she’s ok. So I carry on going.. trying to reduce the pred, dealing with adrenal issues etc. I am extremely tender to touch, even some clothing can discomfort. ( my sister has fibromyalgia and has done for years.)…
Thanks so much for your comments again ☺️
Sorry to hear that.Unfortunately being brushed aside by a GP or Consultant for a Fibro assessment is disturbingly common so people can spend years suffering with the condition becoming more out of control because they can't get a diagnosis and the medical support they need.
It's even more common for doctors to dismiss Fibro if it develops after you are diagnosed with another long term illness and have had that for some time. Doctors are probably more guilty of putting the blame of all of our symptoms on the condition they are already treating you for rather than putting aside the time to be sure this is the case.
It also doesn't help that many doctors won't even recognise Fibromyalgia as a health condition, which also causes a lot of dismissiveness in patients if it is suggested by someone as a possibility if their doctors refuse to acknowledge it. The fact that it's been recognised since the 1990's and us actually one of the very few pain related conditions that is classed as a Disability seems to escape them.
Add on to that a complete lack of interest in learning the basics about the condition and it's diagnosis in a clinic setting and most patients are left struggling or end up getting the increased mental health issues that they are often accused of having when they come in with the multiple symptoms Fibro will cause.
GPs do have access to the information and a diagnostic tool kit to diagnose Fibromyalgia in a GP Surgery setting. They just don't like doing it if they have no experience of doing these tests and because it might require a patient to .......oooohh...... Have a double appointment slot!
The best thing to do if you think you have Fibro is learn a little more about it.
Then do a daily diary for a month, not just including things that could be Fibro related but things that happen each day that link with your other illnesses.
Write down what you eat , what you do , if you exercise.
If you have symptoms after particular things you can see a pattern forming.
After your diagnosis you can see from your diary what patterns are more common and that is proof of the triggers for your Fibro that you want to try to avoid.
If you get things that are visible take photos and create a file on a tablet rather than a phone to show at appointments that they can easily see, this addition was actually what helped me get properly diagnosed for all of my conditions.
My tablet has a medical photo that would put an 18+ horror film to shame.
Rashes, Bloating before and after , Ulcers , Flushing and swollen face, Purple feet and hands , Excessive sweating it's all on there dated.
Many a doctor has begun to raise an eyebrow, especially if I had done what we all do and rested so much to be able to attend the appointment that many of my symptoms weren't there on appointment day, but when the tablet came out they couldn't dispute the physical evidence on the screen , or my BP/ HR readings during events.
Eyebrows raised for a different reason they took things more seriously, it wasn't " in my head" and more action was taken.
When you've done your research and your diary go to your surgery.
If there is another GP request a double appointment with them .
Point out that you have PMR but you are also having the symptoms of Fibromyalgia and they are getting worse which you have been commenting on to the GP for months. Politely but firmly say that you need that appointment so that you can have yourself properly assessed for Fibromyalgia.
You can ask if there is a GP whom deals more with patients whom have Fibro or Chronic Pain they would be the best person to see.
It's often worth printing off the GP Fibro diagnosis toolkit. Basically a print out that you can find online , try a Fibromyalgia charity site to find it, tell them your symptoms again that you have PMR but believe you may have developed Fibro since , as many PMR patients do, and have come in for them to do the assessment, and let them know if they haven't got the assessment guide on hand you've brought one with you to save time.
If they refuse remind them that GPs can do the initial Fibromyalgia diagnosis then choose to treat the patient from that point and refer them to the Pain Clinic for pain management and Fibromyalgia confirmation. Point out it does not need to be diagnosed or confirmed by a Rheumatologist or Neurologist and that actually many Rheumatologists refuse to do the diagnosis or the delay for it is very long and your symptoms need management sooner rather than later.
The Pain Management Clinic also has a long wait but you will still be seen and they do repeat and confirm GO Fibromyalgia diagnosis. You can also request a referral to the Senior Rheumatology Physiotherapist to be assessed prior to physical therapy for Fibromyalgia, Chronic Pain and PMR.
If you get treated poorly or the GP continues to refuse you can again in a polite , positive tone say that you are sorry that they are making that decision and that you hope they will reconsider otherwise you won't have any choice but to put in a complaint to the Local Integrated Care Board because your needs as a patient are being ignored and it's causing an inappropriate delay in your diagnosis and treatment. 9 times out of 10 they don't want an external inquiry and choosecto do their job.
There is also the option of choosing to have an initial Private Consultation with a local Rheumatologist or Specialist whom is recommended as specialising in Fibromyalgia and Chronic Regional Pain . It's better if they also work in the NHS. A private appointment can also help if you feel you have not been diagnosed with Fibromyalgia because the doctor may have assessed you incorrectly.
If the private specialist diagnosed you with Fibro they can send a letter to your GP and NHS consultants as well as you getting your vital copy. You can also ask them to add on recommendations for initial medication and treatment going forward.
Finally , you can ask if it's possible for them to add you to their NHS list for any further tests and follow ups.
They will usually do this if they can . This helps you save money but also means that as the tests, recommendations or referral suggestions are done within the NHS system you aren't going to get stuck with your NHS doctors saying they must confirm the private results before they do anything .....or having your private diagnosis reversed.
This is a lot to take in so please feel free to private message me to ask any questions , especially if you find a problem.
You could also consider joining the FibromyalgiaUK forum to add posts about Fibro and get more advice from people coping with it. Gentle hugs , Bee
Sorry i have no solution, pretty much in the same boat, go from Billy to Jack horrendous fatigue, everything makes it worse, pain everywhere. Fibro too. Just really to send a hug!!
Hello dear Longtimer🌸What a distressing time for you.
I would recommend an appointment with Dr Hughes and see what he has to say.
I don't know how far away you are from Surrey and if it is an option.
Hoping you feel very much better soon.
💐x
Sadly I am in Norfolk, OH won't drive as far as Surrey....thank you anyway. Hope you are pa in free.
It is a trek for you. Norfolk sounds delightful 🙂
I'm not right but much better since taking prednisolone: thank you 😘
I hope you get all the help you need and things improve.
x
Norfolk is delightful, I feel very relaxed near water the broads are wonderful.
I would be happy to drive you to see Prof. Hughes. It would be worth it just because he would prescribe the right amount of Pred to keep you comfortable.
Maybe we should both go and see Hughes at the same time or rather day/consecutive appointments. We are both in Norfolk and I feel at a similar stalemate albeit without the fibromyalgia. Stuck at 4mg but still struggling to walk and not pain free. Not sure what is caused by OA in my knee though orthopaedic surgeon says it is not bad enough to benefit from a knee replacement. I feel stuck as my rheumie, maybe the same as yours? Had basically said just stay on 4mg forever. Though I seen to be playing side effect Bingo as recently diagnosed with osteoporosis now . Works feel happier about staying on pred if it meant I functioned normally
Maybe arrange to meet for a coffee sometime to chat and moan! Very kind of you to offer thank you!
Now there is an idea!!! Wonder if he gives a BOGOFF offer 
"Support group day trip to see expert"!!!!!
If I were in the UK I'd offer to take you too - for me that would be a day trip from yours providing the traffic played ball.
Brilliant idea. That is the main thing I struggle with, blurred vision on and off so don’t drive much. Have said many times my head doesn’t match my body! I’m out there doing things!
That sounds like a plan , he could have a full day support clinic with a bonus talk , I bet most of us would sign up to that.
Now there is a thought! Sarah was expressing concerns about people going for private sessions - really shows she has little idea how bad care has become I think. A session with a really good expert PMR consultant and a decent GP to implement it locally would be marvellous. I suggested to her there should be an online community of expert doctors aiming to improve PMR care and we did wonder how to make that possible and appealing.
Bet most of us would happily pay an affordable sum to sign up to a day clinic , set up like a flu clinic but with the specialist rheumie doing the clinical assessment being followed by local GPs and Rheumies so they can also learn how its done.It would actually be handy if they did similar Regional clinics like this for all the less common conditions , the improvement in both time for diagnosis and treatment would be huge.
Maybe time to get a select few who DO do it well to do some online sessions with some expert patients to discuss the black holes we keep experiencing. Until they know what we face repeatedly - not least this refusal to consider better management with 1 or 2mg extra pred. Maybe someone will die 3 years earlier after having that extra pred - but it won't be 3 years of disability and pain that make that 3 years of life so unbearable.
Someone may not end up developing Fibromyalgia with a more sensible steroid dosing approach and better lifestyle advice because their body has been dealing with flares of uncontrolled inflammation and associated pain for so long that they have triggered a neurological pain condition on top of what they already had.
I think so too - but why does that not seem to figure in their thinking? It is as if they are blind to the fact patients do work out how to improve their pain and disability but they then have a hissy fit because the patient has identified that a bit more pred makes a world of difference.
I'd get angry about it but I'm already struggling with orthostatic diastolic hypertension on standing to add to my list and currently sitting here fizzing away attached to a Holter.I'm meant to be going under general sedation at the end of the month so the timing couldn't be worse and they are still umming and ahhing about whether to do a new Echo beforehand......Erm, YES!
Goodness knows what they will be able to do about it. I have the Tachycardia Syndrome and POTs but I also get supine hypotension , so trying to increase the medication that can lower my blood pressure last weekend gave me a minor improvement in the day but left me having to walk around all night to get my BP above 89/48.
The medication that reduces my heart rate is meant to increase supine hypertension not cause a problem on standing but the diastolic is in the 100's even just standing up so I've had to stop that medication to see if it helps. It's helped very slightly but of course I'm now continually Tachycardic.
Local cardio doesn't really know anything about Dysautonomia but follows my suggestions to a degree but I'm totally lost as to what to do or what I could take now so I'm feeling a bit stuck and a bit more stressed than usual in these circumstances.
I think a private clinic is the only way to go now but it's not going to give me a solution to this immediate problem and I don't fancy ending up in A and E because if they give me the usual emergency treatment it could cause me some serious problems. Sorry , not relevant to the current discussion but I really needed to get it off my chest.
Take care , Bee
Well it IS relevant because it is all about our needs not being met because of blinkering or inability to think our of the box to see us as individuals with one very large wideranging autoimmune problem rather than several individual disorders, each of which has its own management but which requires a different approach when it is a component of a bigger picture.
Or maybe they will actually live longer with extra Pred and it has a protective effect? This possibility was speculated in the Quick and Kirwen paper but as far as I now never researched
The management of chronic inflammation MUST have some benefits surely?
Exactly! Maybe good for the heart and circulation? According to Dr Google, Uncontrolled inflammation can lead to cardiovascular disease, possibly some cancers, inflammatory forms of arthritis, asthma, COPD, fatigue, possible links to dementia .... Low dose steroids are not necessarily a bad thing IMHO and the benefits might outweigh the risks
So sorry and sorry I cannot add to the brilliant advice but would like to send sympathy and hugs if they don't hurt too much. X
Yes, don’t squeeze too hard please! That’s another thing Rheumie asked me, is it painful if someone touches you?….. yes, that’s Allodynia he said which is a Fibromyalgia symptom.
Yep, it's a well known thing for Fibro folk to take a deep breath in before they have a hug. We all want the comfort but we can't handle the contact itself.
Yes, painful to be touched!
I have seen the detailed and useful information and support you have been given. I would like to add a positive note. I have a friend who has had fibromyalgia for decades. She has adapted to the pacing and discovered that cranial physiotherapy is the one therapy that helps. I had never heard of it! She is active and fulfilled in spite of the setbacks. and the low times. You will feel better in your mind with the support you get here and that helps too. Thank goodness for this Forum. The very best of luck. I do feel for you! ❤️
Thank you would try anything, will look into it.
So sorry you’re suffering badly , I don’t understand why your Rheumatologist doesn’t increase your Pred .
I’m not disputing you may have Fibromyalgia, , which sounds awful, but i know for sure when I’m suffering like this, increasing the Pred is heavenly.
My bloods never show raised inflammatory markers , they never have..
I recently had a TIA , was in agony with my hips sitting in A&E all night, the doctor was waiting for my ESR result . It was low , CPR was 4 despite the pain.
I can’t get below 7.5 mg Longtimer , I was going to request Actmara but this recent additional health issue has put that on the back burner .
What I do know is Pred relieves all the pain and fatigue. Last year my son took me out to Hitchen to see the Lavender and Sunflower fields . I was dreading the 100 drive there , i didn’t want to be a stick in the mud , so took a big dose of steroids. I don’t advocate this nor advise it for others.
My goodness when we arrived, I saw the fields , as beautiful as they were my heart sank at the uphill fields upon fields . I couldn’t believe it , I must have walked miles up and down gathering lavender until sunset, without pain and with boundless energy. It was a joy to feel normal.
One could argue it’s little wonder I can’t get below 7.5 mg , but I’m not going the steroid sparer route and will attempt tapering again when this current stress has lessened.
I too was given Gabapentin and Dermovate ointment for Lichen Sclerosis., affiliated with Fibromyalgia. I didn’t use either, the Dermatologist remarked how well everything was . I’d used topical Oestrogen faithfully, having put it on the back burner while caring for my mum . We always put ourselves at the bottom.
We all want to stop taking Pred , I’ve gotten down to 2/3 mg in the past. For now it is what it is.
I do wish you could get a second opinion. We’re not a tick box exercise, we’re human beings, all different and unique.
In the meantime take care and think on . Sending hugs x
Hope you are feeling better now, what I wish was possible is more blood tests to show other possibilities other than PMR or Fibro!
I understand, do you have your doubts about PMR ?
I remember having every possible Blood Test , instigated by a super German GP when my regular doctor was off sick .
I have wondered at times, but every test was negative . It’s particularly difficult for those of us who don’t get raised inflammatory markers, My dear Mum had untreated PMR and GCA for this very reason, it wasn’t investigated until it was too late.
Have you had relief from higher doses of Pred ? My rheumatologist was quite knowledgeable, told me 20% of patients don’t get any change in the blood results.
My Mum didn’t get a fever with Sepsis or any blood pressure changes either. We’re all different and present differently Longtimer . I too wish there were other definitive tests for PMR and Fibromyalgia.
I held off from starting Pred for months until I literally couldn’t dress , move and yelped with pain. The Prednisilone was like a miracle. I wish you could see a different Rheumatologist. Sending hugs x
Thank you for that. Hope you are coping now…and pain has eased.
Thank you for sharing, Greensleeves😘
Ah thank you, I didn’t want to make it about me but feel so sorry for Longtimer so thought I’d share my experience. 😘 xx
What a lovely son, what a soul boosting trip. These things help so much. 🪻🌻
Thank you Jane he is a lovely boy, the girls are golden too . We still have the overwhelming urge to protect our children, they obviously feel the same for their mum’s . I made some gorgeous little lavender filled drawstring bags to put in draws . They’re still scented now 😍. It was a beautiful day and one i won’t forget.
Take care 🌻 💕 xx
There have been some brilliant responses here, but I also wanted to add that if you were on pred at the time of the PET CT then it may not have shown the true picture. My 2nd PET CT they made a note that due to steroid medication it couldn't be accurate.
I was on 5 mg at the time but didn’t take pred before having it done. Thank you
I am sorry for your suffering Longtimer. You have inspired a wonderfully wise thread. If only doctors would develop this wisdom and knowledge.
In some ways I am in a worse condition than when I was first diagnosed and my life has become very limited. I clearly need to look out of the box. I am either in remission from PMR GCA and suffering from a myriad of side effects. Causing a permanent cold, possibly long Covid. Severe gut symptoms, nausea and vomiting, diahorrea and constipation to a lesser extent, lower abdominal pain, extreme exhaustion, difficulty walking or getting comfortable, days of awful pain, itching skin, breathlessness. Or if I am not in remission and the whole saga has begun again. I am stuck on 4.5 mgs of Pred. Any attempt to reduce causes an increase in pain and fatigue. Possibly increasing by 10 mgs would afford some relief of pain but I am reluctant to risk this. My very good Rheumatologist seems stumped, as if I am just one of the unlucky ones. Fibromyalgia hasn’t been mentioned but it fits ( not much benefit in a diagnosis, me thinks). My latest GP dreads me but seems to have a weary determination to help. She has ordered a raft of tests and referred me to a Long Covid Clinic. My symptoms have all worsened since a bout of Covid in January ( I have had 7 vaccines). I am stuck in a box labelled “ we don’t know”. My husband comes to all my appointments because he has a very good receptive brain and can remind me of what they say. He’s getting tired though, everybody is, especially me. X
Oh dear Jane, these posts are choking me up! We have battled all this for so long! Maybe many people do move onto Fibromyalgia from PMR, it’s the lack of knowledge that gets to me! “We don’t know” isn’t good enough! It’s the waking up every day the same that gets to me. Wish I had a suggestion to make to help you. Do you still plan to move abroad? If so check out the health service! Keep us posted
I'm not sure it becomes fibro - but the immune system and the body do both "learn" and try to hold on to effects in terms of malfunction and pain. Unfortunately, someone coined the diagnosis "fibromyalgia" which covers a lot of what we experience in some PMR and it is an easy get-out for many doctors, rather than admit like Sarah Mackie does that she doesn't know, The irony is that the guy who "invented" fibro has said he wished afterwards he HADN'T described it as it has been so misused.
Misused is an understatement!
It should be banned!!!
Not really , Fibromyalgia wasn't "invented" it was discovered and a lot of research since has confirmed it as a health condition distinct from others. I can understand why the original Fibromyalgia researchers became frustrated though , it's the resistance and misuse of it in the medical community that causes it to get a poor reputation which it really does not deserve and makes life a lot more difficult for people whom have to live with it.Fibromyalgia just shouldn't be misused by Consultants to avoid testing and doctors should do their jobs properly and learn how to properly assess patients and distinguish between the two.
Often the difference between having Fibro at the beginning of these health issues rather than developing it afterwards is that it causes pain in many different locations to PMR. Often a person with Fibro has many other non pain related symptoms that people with PMR don't typically have at initial presentation , basically Fibro feels like PMR with Severe Menopause , IBS , hives and CFS all together.
Or like people do when they first get diagnosed with PMR and start high dose steroids.
Fibro also gets worse as the day progresses rather than the pain being more intense in the morning.
Dear Sheffield Jane sending a hug and best wishes. I hope you get a diagnosis and help. It sounds awful for you 💐x
Just wondered if you could apply sick day rules and add an extra 5mg pred?
Actually, if there is a possibility that you have Fibromyalgia it's definitely worth getting it confirmed on your medical notes and in a doctor's letter.For one, you can start getting the treatment and support to help manage it and by finding a suitable Fibro medication you can find it easier to cope on lower doses of steroids , and find it easier to taper.
Secondly, it's really useful if you are still of working age or find travel difficult.
Fibromyalgia is one of the few pain related conditions that is classed as a Disability in the UK.
At the very least you can get a Blue Badge and help with car tax.
You can also get discounted bus and train travel for yourself and a carer/ partner if you need one when you go out.
You are entitled to apply for PIP and enhanced unemployment allowances which allow you to get benefits but with DWP exemption to be actively seeking work while your condition is active.
You can also get additional help and special chairs , flexible working hours etc in your workplace by getting Occupational assessment either in work or from a government work assessment.
You can also get help from the Chronic Pain clinic with CBT training and a 12 week Group Pain Management course , you request referral on to one which is led by a CP doctor , Physiotherapist and Psychologist.
Getting a referral to NHS based Occupational Health can also bring you a personal and home assessment werecthey will establish if you would benefit from various gadgets, wheelchairs and rails and supports which are then provided for free.
All of this can be a big lifeline after you have been struggling for years with the pain and symptoms of other conditions as well , it can certainly make doing the everyday things a bit easier.
I feel for you because you are such a lovely person and I feel like you do know how awful it all is at times. Hugs , Bee
So sorry to read this Jane . My health took a serious downturn after contracting Covid the first time in 2020 .
I had adrenal crisis from S&D , Tachycardia and a gastric bleed as well as the usual unpleasant breathing symptoms.
I was hospitalised and soon settled on IV Dexamethasone, I was on a very low dose of pred at the time , almost off it .
Two weeks after recovery and having to go back up to the starting Pred dose yet again, I began having strange horrible symptoms that have never gone.
This was prior to the vaccine but I’ve also had 7 of those since . I’m reluctant to have another after the TIA.
I lost my voice for a year, I developed Asthma, I started horrendous burning ,not unlike Thrush and haven’t gone a single week without taking antibiotics for UTI’s , my stomach has been horrendous, it bloats up like balloon , motility is slow, food will sit in my stomach or I’ll projectile vomit , I have SIBO or IBS C , potentially gastroparasis.
Exhaustion is off the scale. I’m not living a normal life like before, I’m too tired to get the vacuum out and polish . I make sure I shower every morning and bleach the kitchen and the toilets . Put on the painted smile for the children , grandchildren and friends.
I’d love a cleaner, but most of all I’d like to be me again. I’d like us all to be us again.
I was told it was long Covid , but nothing has come from the diagnosis. I’ve bought vagus nerve stimulators and have Hepa filters in every room. At least they’re hopefully drawing the dust in .
My girls come and clean, I tell them I’m okay and I’ll manage. Changing the bed every week is the most challenging job .
I don’t believe they know enough about Covid, if it’s a vascular virus and we have a vascular condition, it’s surely going to affect some of us badly. I can honestly say Covid was more life changing regarding my health than the PMR . Although you wouldn’t wish either on your worst enemy.
I’m even wondering about this TIA now .
Take care Jane and know you’re not alone. Sending hugs 🤗 xx
I'm so sorry to hear how much you are suffering. Sending a big hug🤗x
A dear one in my family was thought to have long covid when it was a rare vasculitis instead. Could you ask to be checked again just to make sure?
Ah thank you, yes I will ask the GP about this , particularly after reading it can start after a virus.
I am sorry one of your loved one’s is suffering from a form of this horrible condition. I hope it’s under control for them. It’s one thing after another, I feel so guilty for complaining when my younger brother has Huntington’s disease and see the challenges he faces.
Thank you for thoughtfulness, Take care xx🤗
Sharing your health challenges isn't complaining🌸🤗😘Your poor brother 😔 How very difficult for him. That's so very sad.
This forum is a great meeting place and the care and support is such a blessing.
Best wishes
x
It is the best forum with people who understand. It is indeed a blessing, so grateful to those who make it happen.
PMRpro and DL are such fountains of knowledge. I look on everyone here as friends but i suppose because of my brother, i don’t post much about myself unless im really concerned. I’ve had this for so many years now .
Take care and best wishes xx
I admire your strength. Like you and others on here had the problems so long, but we don’t give up on the battle. We are forceful friends in this struggle. I just like answers, but the right ones!
Ditto ,we want the right answers , we need to see the right people.
Very frustrating at times , but we don’t give up. xx
I still think Long Covid isn't one entity - it just triggers some rare and not so rare autoimmune disorders. So there will be no single answer to it.
It’s a crazy conundrum Longtimer , we don’t even know where it originated from or what’s in it xx
I agree PMRpro , people have such a wide range of symptoms. Different treatments for different variants . xx
I do too. For some people it triggers what looks like Lyme disease. A friend has it and I can't understand why they don't trial a few weeks of steroids
Many doctors adhere to the myth that PMR routinely shows up on FDG-PET/CT scans; and if the scan's clear, 'your PMR is gone'. None of the many peer-reviewed articles I have read say this is true. The strong link between GCA and PMR (and the differing dose of steroids required to control them) suggests PMR is caused by milder, more diffuse inflammation of the blood vessels serving the larger muscles. Only in extreme cases (probably better classed as another form of vasculitis) does it reveal itself. The scanner technology is remarkable, but not magical, whatever the doctors think. Taking scans during or after steroid treatment, without an abnormal pre-diagnosis scan to compare it to, seems crazy.
Great informative post thank you.
Mine showed up on the PET CT scan, classic areas of shoulders and hips. Agree they could be hit and miss though especially if you're already on steroids
Here's an image gleaned from the internet. This GCA patient shows severe inflammation in the neck and shoulders. To be classed as inflamed, the blood vessels must appear darker than the liver. Any vessel lighter than the liver is classed as not inflamed, even though mild, diffuse inflammation may be present. This limitation in sensitivity arises from the way FDG-PET/CT scans work. What they actually show is which tissues are consuming glucose quickest: that's why the brain, heart muscle and kidneys appear black, and the liver dark grey. Healthy blood vessels should appear pale. However, if they are lined with millions of busy, hungry autoimmune cells, they turn darker. The contrast on the image is adjusted and then the colour of the liver is used as the deciding criterion.
Thanks that's really interesting
Thanks for starting this conversation, Longtimer. Rheumy and GPs not interested in my fibro, which predates my GCAPMR diagnosis by 13 years. Now wondering whether to push for one of the meds for fibro you mention. Perhaps it would alleviate my other conditions, or at least allow me to distinguish between them. Blearyeyed's suggested sequence sounds sensible - will give it a go when have recovered from horrendous head cold. All the best!
Yes, try the meds they may suit you and prove something surprised you haven’t been offered the meds already. good luck!
Your post and the replies make extraordinary reading and many echo my despair at my current situation with increasing pain everywhere, depressing fatigue and complete blank from Rheumatologist and GP. There is some hormone/ age related osteo arthritis in small joints (and no! I can't have HRT at 72 apparently) The very ' long' pain and stiffness - shoulders/arms /legs feel like a PMR but I'm wondering now if the intensely painful smaller areas - shoulders,arms could be 'fibro'? useful insofar as another treatment might work - but how to convey any of this to a GP who informed me a moth ago that it's now all Osteo, take codeine, reduce Pred. (on 4.5 - I did increase to 7mgs 🙊🙊when I had a challenging work day!💃)I've just been asked to repeat a blood test as it shows inflammation! Yipee! by which I conclude it's reached a level They consider to be inflammation which as is often pointed out here, may bear no relation to one's inflammatory pain at measurably lower levels. Wondering how this will be explained but as trying to fight your corner with a pain flare and a desperate desire to sleep as everyone here will know, isn't easy. I just want to print out all the contributions here and make the GP read everyone's informed, and well articulated experiences of extreme pain etc. as we try to navigate these conditions which for some of us are then met with incomprehension and scepticism. I hope we hear things improve for you - that you can get to see someone who can help and you can feel better.🌈xk
If I've understood this correctly, the position you are in now is that you have been told you don't have PMR any more because it doesn't show in bloods or on the PET CT scan. You have been told therefore it must be fibromyalgia. However, you get relief when you take 7mg of Pred and as fibromyalgia doesn't respond to steroids the steroids must be working on something steroids work on, PMR or an other inflammatory illness. I assume your adrenals have been tested and deemed to be working OK or that is another possibility, that the steroids are making up for lack of cortisol. If you have something that responds to steroids then surely you should still be under the care of rheumatology?
That’s correct what you have said. I do feel better on 7 mg, and yes, I can ring the Rheumie if necessary! Most don’t want to know about Fibromyalgia simply because in my opinion they don’t have any answers! How are you coping with the back brace?
The fibromyalgia is only PART of what you've got going on then, not the whole answer
Well, when PET scan showed no inflammation it was deemed it must now be Fibro, which isn’t supposed to respond to steroids, well it does for me….if I up 5 to 7mg enough to let me leave the house at least.
"if I up 5 to 7mg enough to let me leave the house at least."
And you have to get someone to hear you saying that.
You were on 5mg pred when they did the PET- it could well not be reliable.
I agree, I didn’t take pred on the day of the scan. Told my GP yesterday how different I feel on 7 mg, she said yes, but when you have to lower again you will be feeling just as bad. I think she thinks I use pred as a painkiller. I don’t understand why Rheumies don’t try steroids on patients with Fibromyalgia, especially patients like myself and others on here who can’t tolerate the other Fibromyalgia meds.
how absolutely infuriating.. so sorry to hear this. hope you get relief
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Update ... flare has nicely abated...not on methotrexate YET! what do I do when medical insurance stops my cover for PMR?
Further to difficulty tapering post
GCA SYMPTOMS RETURN AFTER REDUCING PRED 60 TO 55 MG
Is it back? 🙈
Asking for yet more expert advice from you wonderful people
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