I was diagnosed with PMR 5.5 years ago. My rheumatologist has never believed it was PMR even though I responded to steroids and had all the classic symptoms.
I can taper down to 4.5mgs (which I have done several times) but if I try to get any lower I have a flare and I usually end up going back to 10 (or 15) mgs steroids.
A new doctor at my GP Practice has suggested it may be fibromyalgia....
Anyone else had this suggestion???
Do the symptoms still go away with pred? That is the crucial difference: PMR is inflammatory and responds to pred. Fibro is a fault in the perception of pain and non-inflammatory so will not respond to pred.
Just because you have had it for a few years doesn't mean it isn't PMR - the median duration of management with pred is 5.9 years. All what is happening means is that the underlying cause of PMR is still active and creating inflammation. You have achieved the objective and identified the lowest dose that manages the inflammation and, therefore, the symptoms. Once you get stuck at the same place more than a couple of times that is your body saying stop, enough. If you react quickly when another step down is a step too far, then you won't have to go back to 15mg, adding 5mg for a week is usually enough and you can go straight back to the last dose you were good at.
Hi wenhaz, you can have both. I have had fibro/chronic pain for 20 years and took tramadol and amitryipline. Then I got pmr pain which the pain killers would not touch. Dr dx pmr and pred and pain controlled. As pmrpro indicates... That's the acid test. If pain killers work, not pmr... If pred works not fibro.
As a sufferer if Fibromyalgia , I know that having both conditions can cause confusion , not just for the Patient but for the Doctors involved in diagnosis and the treatments involved.
Fibromyalgia , is a hypersensitivity response in the minor / micro nerves to triggers of Pain and Pressure which can also affect internal nerves involved in digestion , sleep , brain activity and temperature regulation as well as causing Chronic Pain in nerve endings at any of 13 specific Pain points around the body . To be diagnosed with Fibro , the Pain needs to be Chronic , and affect at least 5 out of the 13 main Pain Points around the body every month ( not necessarily every day ) over a period of 6 months with no other causes for the Pain.
Unfortunately , Doctors quite often fall into the trap of believing Chronic Pain Conditions fall into an " Either / Or" situation.
Well , after years of suffering from , Fibro and Chronic Pain Syndrome linked to Ehlers Danlos Syndrome / Hypermobility Syndrome before GCA , and only recently being fully diagnosed after 20+ of Pain, I can say from experience that it is very common to have more than one condition at once. Many of my EDS friends have Fibro , many of my Fibro friends have Arthritis or Heart Issues , some of us have three or four things going on at once .
And , if more than one condition is occurring at once , each of the illnesses can aggravate the other if one of them isn't being treated and managed properly.
Although , Steroids can be used to help manage Fibro , it's usually done in the form of short term therapies or injections into Pain sites , and is usually a choice of treatment that is used after other Nerve Medications and Treatments have not been successful. Long term Nerve Medications are the first line in drug management and usually continued alongside steroid treatment. Without something that specifically targets nerve pain , both Drugs and Physio and Lifestyle Therapies Fibromyalgia can continue to be uncontrolled.
If you have another condition like PMR, GCA or a type of Arthritis , the Fibro Pain can build Pain Tension in the body and put more of a burden on the body triggering the Joint Pain and Inflammation too. If you have a Flare of your other conditions that triggers a Fibro Pain increase. It becomes a Vicious Circle , each aggravating the other unless you are treated for both conditions at once.
If you Doctor thinks there is the possibility that you have Fibro it is worth going to speak to them again and asking politely the question , " Could this be both PMR and Fibro and would being treated for both issues at once help me get my Pain under control ?"
If they aren't sure , you need a Specialist Referral back to Rheumatology , but ask them to include the fact that you have PMR as well as suspected Fibro in their letter and request for the possibility of seeing a Consultant with experience of both . A referral to the Pain Management Clinic and Physio with a Chronic Pain Physio whom also treats Rheumatology at the same time is worth a firm request . The PMC are more used to creating better Pain Medication Combinations and organising add on therapies that your GP or other Specialists may not know about ( or try to avoid because of expense or lack of knowledge).
In the meantime , if your GP suspects you have Fibro they can prescribe the first line Nerve Medication to you without Specialist approval , at a minimum dose at first rising to what works , to see if you get an improvement in your daily Pain levels. There can be a period of trial and error as you find the Nerve Medication that gives you relief and it doesn't have the same quick reduction in Pain of Steroids for PMR , the effect needs to build up and you do need to work out what triggers more pain and avoid it .
Meds include , Convulsants like Carbmazepine ( not reliable , really ) but you can request to try Garbepentin , which is used by many Fibro sufferers . Many people are trialled on Tramadol as a first option too. They can be taken at the same time as your Steroids , each Medication targeting the Pain it's needed to deal with. Both Treatments help you get your Pain in control to help your recovery and eventually make Tapering more successful. Many people also use Paracetamol through the day for Short Term Pain and a firm of Sleep Medication like Amytriptyline or Antihistamines.
Although , PMR can be a Chronic Condition that can limit itself and go in years , Fibromyalgia is a Chronic Condition that stays , you will need long term treatment and may never be 100% Pain Free .
You can be positively Pain Managed though and still able to do your Every Day Activities and most things you did before as long as you avoid your own Pain Triggers by Adapting the way you do things and Pacing yourself. Fibro Pain can also be brought under control quicker after a Flare with Rest and a Temporary increase in Medications .
Good luck and if you need more help or advice as you go along feel free to PM me , and if diagnosed also join the Fibro group on HU for more support and advice .
Take care , Be Calm , knowing is half of the battle , xx
Thank you for such a comprehensive report. I really do appreciate it. I will phone my doctor tomorrow, but know that I will have to wait a minimum of 3 weeks for an appointment. Hopefully I can keep my pain under control until then. Once again thank you.
During those three weeks it might be worth starting on a Pain and Symptoms Diary so that you can discuss what you discover for yourself about whether certain things cause more Pain or not , if your Pain and Symptoms responds to things like Paracetamol , if it improves during the day or gets worse at certain points.
Also , including other symptoms you may not think are related like Sleep , Sudden Headaches , Tingling on activity or Pressure. If you feel itchy or get rashes or pain from wearing certain things or in certain temperatures. Fibro , can also include a lot of Fatigue , Brain Fog especially on busy days , Palpitations , Night Sweats , Allergy and Intolerance reactions and Digestive changes . All bringing added Pain to your usual Pain Spots.
Keeping a food and symptoms diary for a year led me to the conclusion that I have histamine intolerance, which causes all sorts of reactions like swelling in face and neck, racing heart, digestive problems, skin rashes, overactive bladder, sudden overwhelming fatigue etc etc. Since I put myself on a low histamine diet things are more under control. Unfortunately there isn't a pathway in the NHS for diagnosing or managing tit so I have to self-manage through diet and avoiding smells lke perfume, air fresheners, cleaning products etc.
Yes, there is definitely need for the NHS to catch up on doing more to diagnose and work with patients on histamine intolerances , hypersensitivity and allergy responses . These issues and their symptoms are commonly linked to people with Fibromyalgia , Ehlers Danlos and many of the Autoimmune/ autoinflammatory related conditions.
I am intolerant to many drugs I have been trialled on over the years and some of the ones I do take I can only use at lower doses because I have more side effects .
The Diary was essential as Neuralgic Pain can be helped in part by avoiding many different , sometimes unusual triggers not always related to histamines , so working out when the pain is triggered and the type of added symptoms helps you create your own individual form of Self Care to reduce some Pain Load .
In Fibro , temperature , sounds , light , weather and pressure can all play a part in how intense your symptoms can become too.
I'd just like to say that some of the fibro trigger points coincide with those in myofascial pain syndrome - just to muddy the waters even more!
Myofascial pain syndrome is due to inflammation of the fascia, the transparent skin you see around some muscle groups in joints of meat and poultry. The inflammation is due to the same cytokines as in PMR so it will often respond to higher doses of pred. The trigger points are felt as knots of inflamed and hardened muscle fibres, mostly in pairs on either side of the spine, in the shoulder muscles, about rib level in the latissmus dorsi muscles (or thereabouts) and in the low back in the piriformis muscle about where the baby's dimples are. All positions can irritate the rest of the muscle causing it to become tight and even go into spasm to protect itself or irritate nearby nerves leading to referred pain in the regions they supply: in the shoulders into the upper arms and neck, at rib level into the ribs at the side and front and in the low back into the regions supplied by the sciatic nerve.
I think you have just described how I feel!....at all those points....
I am on day 4 of 15mg pred (upped from 10 which had no affect)….how much longer do I stay at this, no ease as yet, or do I go up? Perhaps our bodies get used to pred and need more? Thank you
It may well not be the PMR - and myofascial pain syndrome can take quite a while on oral pred to calm down. Have you tried sitting with a hot water bottle over the sore bits? I find it relaxes the muscles and relives the pain - but I'm talking about a few hours or more a day over several days to really get it improved. Targeted therapies work faster.
Yes, sitting now with heat pad across my back , certainly helps.....the reason I have been puzzled by it is because of the fatigue with it, hasn't lifted, didn't think it would accompany myocardial syndrome. I struggle here in Norwich to get a physio that will treat the above...they all seen to think they might set off a flare. I have had acupuncture in the past, but only got an expensive good night's sleep!....Bowen helped, but not much....but never felt as bad as I do now....
Suspect x-ray on Friday will only show if there is a disc problem...
You are so knowledgeable! Glad I now have access to your posts.
I have just read a medical paper which says that symptoms of PMR have a circadian rhythm ie: they are worse in the morning and often go by 4pm. The symptoms in fibro do not display this rhythm. I don't have fibro so I can't judge, but together with the other points raised may be of help?
Many times I’ve wondered what this actually is...sometimes fibromyalgia seems spot on, most of the time PMR fits the bill...I suppose a visit to big time health center like Mayo’s would “maybe” clear things up...as for now I’m feeling pretty good, tomorrow....1 1/2mg!!! See how it goes! Going on three years down from 20mg...I only taper when I feel relatively well, usually stick at a dose for 4 or 5 weeks...
Is there really so much difference in the overall symptoms? While I was on my search the trigger points thing really muddied the water for me - if you gave me a list and I ticked boxes the overlap was enormous. The clue eventually was the response to 15mg pred - that wouldn't have happened in fibro.
That's the thing isn't it , because Fibromyalgia as a Chronic Condition rather than Fibromyalgic Pain as an acute symptom of another issue can affect so many pain points common to other Conditions it becomes very confusing to know which Pain is playing up more as a Patient . It is possibly the reason that Fibro as a Syndrome doesn't get considered by a Specialist until other options have been excluded , and the response to treatment of what you definitely have , like PMR or RA , proves to act inappropriately , and they prefer it to present in more than one area of the body .
It does take a Rheumy or Neurologist that really understands the Syndrome and how the Pain presents to diagnose it , as it's the type of Pain and reaction time , plus the difference in activity triggers of Fibro Pain , from what I am learning so far , that differs from the Nerve Pain from other Conditions or types of Neuropathy. It's also why it can take them longer to diagnose if you have another condition too and you need to present with Fibromyalgic Pain in those spots over a number of months .
I can recognise the differences in myself now alot of the time now , but there's so much trial and experimentation involved in judging what is Flaring when you have more than one of these conditions affecting you at once.
All the time. I had rheumatologists saying it was fibromyalgia for 3 years as they said I was too young to have PMR. I protested it must be PMR as steroids worked, walks like a duck and quacks like a duck it probably is a duck. To cut a long story short, I eventually had a PET scan which confirmed it was PMR. I'm sure if they gave people who are fobbed off with a diagnosis of fibromyalgia a short course of steroids loads of them would turn out to have some kind of autoimmune disease, PMR or something else.
Me too - but there are still doctors who will claim that pred works for fibro too!
If only. Wish pain killers were as effective for my fibro/chronic pain as pred has been for pmr pain.
Pred is used as a treatment further down the Fibromyalgia Management Pathway , but the difference being between PMR and Fibro is the Pain response to it . It's still unreliable for Fibro , even in combination with other Nerve Relaxants , so you don't get the near instant relief for the symptoms like you get if the pain is inflammatory like in PMR. With Fibro , it only works if the condition is severe and also causes knock on symptoms of inflammation , if it works when tested it can seldom be reduced past the point in gave any relief.
The Pred effect test would definitely be a way to stop the Specialists arguing about it if you have one disease or the other , but only if those Doctors had the knowledge they really need about both Conditions , I've not found any Doctor with real awareness of both Syndromes yet !
BTW - have you ever said what dose of pred you were on when you had the PET scan?
The first PET scan I had in 2015 which didn't show anything I was still on around 5 Pred I think, may have been a bit more. The second one two years later which did show the PMR I had weaned off steroids and was just taking hydrocortisone.
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