I am finding it really interesting that having told my friends of my recent PMR diagnosis I’m being told “oh yes, I have a friend(s) who have the same condition “.
I consider myself a pretty well read, informed person but I was totally oblivious of the condition. I’m sure there are people who are trying to raise the profile of PMR & GCA but is there no one in our community who has the energy and media connections to suggest how we can improve matters? Maybe I am being naive and unfair and there are people already beavering away?
At the moment I’m still struggling with initial symptoms having discovered that the day after “grandchildren care” my muscle pains ,weakness and stiffness are as bad as ever ( I know I must learn my lesson!). However when things have settled a bit I would be happy to assist in any “work” that is being done in raising awareness.
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SurreyFlower
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I hear you!!!! I consider myself well read too; especially in things that have to do with illness and disease, and I had never heard of GCA (or PMR) until the day I was diagnosed with it! My GP sent me to A&E (as she suspected it was GCA) but the Consultant on duty said it wasn't; he said it was a migraine, and sent me away with ibuprofen! If our medical professionals are not aware of these auto-immune conditions, it's no surprise the general public is in the dark.
I wouldn't go as far as to say naive and unfair - but yes, there are a lot of people beavering away at it! The situation now is far better than it was something over 10 years ago when 5 women met on the patient.info PMRGCA forum and got together to form the charity. There was already one in Scotland and a support group in East Anglia but that was it. There have been a couple of other forums in North America but over the years they have disappeared.
These 5 ladies got some medical contacts and a first meeting was set up in London. The first result was the formation of the NE of England charity (which was wound up last year) and later the national PMRGCAuk to cover all of England and Wales was founded. The 3 charities have raised money, funded research, published newsletters, the NE one made a DVD called "You are not alone" to inform patients, families and friends about how PMR affects us physically and mentally and also set up the second forum in the UK, and PMRGCAuk later set up this forum and developed a presence on Facebook and Twitter (I think) as well as supporting the founding of more support groups across England in addition to the then two in the northeast in Gateshead and Middlesborough. Funds raised by the NE groups are being devoted to setting up a training scheme
There is a Board of Trustees and we have a couple of paid staff, but otherwise everything is done by volunteers, as was all the original work to set up the charities. Some of us work as patient research partners with groups all across the world who are carrying out research in the field.
By the way - some of the people claiming they know somebody with PMR may be confusing it with fibromyalgia which isn't the same thing at all. Just as they confuse osteoarthritis with rheumatoid arthritis!
The thread you are on is run by a Charity, PMR GCAUK which you have already noted, of course.
This charity will be 10 years old on 14 March this year. Since that time great strides have been made you can read what they have to offer by following this link:
I can assure you that before that date, little or no research was being done, except for one man and then 25 people who paid there onw way to London on on the 14 March 2008 determined to set up a charity and raise awareness.
I could write a book about those 12 years. However the charity is mainly run by volunteers and runs on a shoe string.
Come back here and ask all the questions you have and they will be answered every time without fail.
In the meantime, quickly learn to listen to your body and do not push it - the oxygen supply to your muscles is impaired - you push and it bites you back quickly. Gentle exercise, perhaps aqua.
Come back and ask any question you like, it will be answered and we are all here to help each other.
Two more things..............please follow the link and remember there is a light at the end of the tunnel, we just do not know how long is our tunnel.
Sorry, I looked at your profile before I answered and thought you were just looking for more info otherwise I would have responded differently.
I think it's like most things in life... Until it effects us or a loved one we have no reason to know about illnesses or treatments. I had a friend whose husband and late mother in law had temporal arteritis/giant cell Arteritis but when I was dx with pmr it took a while for me to realise the relationship between pmr/gca. There are a few "celebrities" who have periodically surfaced in the media. I have learned more about the condition from members here than my gp or rheumy. I do read research articles and know there are research projects that have been done and are ongoing.... See pinned posts. I have often seen it written here that historically and culturally illnesses that are primarily seen as a problem to "women of a certain age" are oft neglected. Perhaps this, and the self limiting nature of pmrgca means it is a bit of an orphan. As retirement ages go up and women of "a certain age" are expected to work longer, there may be more action.
Thank you for your thoughtful response. I too had wondered if it was owing to most PMR diagnoses being to women of a certain age, in the same way that heart attack symptoms in women have only recently been recognised as possibly different to those of men in many cases.
Yes. We have periodic discussions about such issues. I am hoping that the work/retirement thing works for people in the future even if I don't benefit much, but that would be good too!
I think that the original description of what we now call PMR but was then called senile rheumatic gout was based on a set of male patients!
I was right - but even if his cohort originally was hardly typical of the real patient population, the comments he made about PMR are as pertinent today as they were then!
Join the club! There are many people on this forum, who hadn't heard of PMR or GCA, including myself, until such time as they were diagnosed.
However, when you have been on this forum for a while, you will get to know of the work that has been, and still is, done on research etc - not an easy task with all the other, perhaps better known, charities that compete for money.
In the meantime, there is a huge amount of knowledge here, from which you will surely benefit. After five years of living with PMR, the one really important lesson I have learnt is to reduce expectation, and be patient!!!
I have had people say this to me, until I question them and it turns out their friend has fibromyalgia! I have in reality in the past 4.5 years only encountered or heard of four people who actually have or had PMR!
“ I’m sure there are people who are trying to raise the profile of PMR & GCA but is there no one in our community who has the energy and media connections to suggest how we can improve matters? Maybe I am being naive and unfair and there are people already beavering away?”
is upsetting (in fact rather rude) to those are and have been trying to get the message “out there”.
Both illnesses are not life threatening (life changing maybe) like cancer heart disease etc ; affect older people, mainly women although not exclusively, and can be easily controlled by relatively cheaper medication (although some newer drugs are more costly).
It is not seen as ‘important or sexy’ as cancer or childhood illnesses so it highly unlikely large drug companies or celebrities are likely to front a media campaign.
The media do cover it occasionally if a ‘personality ‘ does suffer from it - but it is rare.
The Daily Mail health section is one of the papers that do highlight it from time to time (not that I’m a fan of DM, but give credit where’s its due),
This will give you some more information, with plenty of links
I know it was a honest question - and you certainly aren’t the first to ask it, nor the last probably- unfortunately.
I did myself, but the implication was nobody has done anything - you may not have mean it, in fact I’m sure you didn’t, but that’s how it may have come across, and that’s certainly not the case.
It is funny that the daily mail is one of the few that disseminate some of the research or present a case study. I do wonder how people manage without online access to info or pre Internet.
I was contacted by charity - DM had contacted them to see in anyone losing sight through GCA would be willing to talk to them.
Of course, I agreed - anything to further the cause!
Doesn’t say anything different to what’s on here for all to read, but it’s linked here. Have to say hamster cheeks gone, considerable weight loss and hair longer now -
Thanks. I think that was the last time I read it.....it was a discussion about how hamster cheeks do go away and you put the pictures up to demonstrate.
hi dorset lady. read your various blogs. I wrote this recently and sent it to cycling mags and the national press. I include it here. Does this meet your criteria? "WHEN YOUR BODY GOES WRONG A KEEN CYCLISTS STORY Geoff. Godschalk July 2021
Those that know me probably think I am bonkers about cycling. They would be right. As a kid I cycled, walked or bused everywhere. No family car, it was the 50’s. In my late teens it was girls, college and then work so the cycling didn’t rematerialize until a friend dragged me back into cycling in my early 40’s. I swapped a curly Hetchings track bike for a Raleigh road bike, shouldn’t have done it. I was unfit, short of breath and couldn’t walk upstairs without getting out of breath. I had neglected my body and it was paying me back. I still remember my first out and back ride with him, 25 miles at average 12 mph and I was cream crackered. I persevered every Sunday getting slightly fitter and faster and was soon was rid of that Raleigh for a custom made Condor. I joined the MAMMIL brigade full time and have never stopped since, until now.
If you are a keen cyclist and like challenging yourself you’ll appreciate that we tend to overdo the training and try a bit harder when it hurts. No gain without pain eh? Nothing better than a ride from Lands End to John’ O Groats, or a 6 day challenge through the Pyrenees west to east, Paris to Nice over the Massif Central range including Ventoux, or Pisa to Verona through the Dolomites. Whilst I missed out on the first two through injury the last two were riding with clubmates from CCAshwell the club I started. Life affirming and something to remember forever. By the way the last I did in 2019 at age 68 at 12-13mph av. for 550miles with 55,000ft of many of the classic climbs. Paris to Nice 2015 slightly faster but much longer with a little less climbing. So that’s basically me as far as exercise and keeping fit go. You get the picture.
I have thought carefully about publishing this account. I want people to be aware of my current condition. It is considered rare, but I suspect far more common than is said. I have PMR Polymyalgia Rheumatica which is an inflammatory disorder that causes muscle pain and stiffness, especially in the shoulders and hips. Signs and symptoms of PMR usually begin quickly and are worse in the morning. Most people who develop PMR are older than 65. It rarely affects people under 50. The signs and symptoms of PMR usually occur on both sides of the body and might include aches or pain in your shoulders, neck, upper arms, buttocks, hips or thighs and stiffness, particularly in the morning or after being inactive for a time. Limited range of motion in affected areas and pain or stiffness in your wrists, elbows or knees. Bursitis in joints especially knees is common. I had it. Thought it was badly adjusted cleats causing it. More general signs and symptoms include mild fever, fatigue, a general feeling of not being well (malaise), loss of appetite, unintended weight loss, depression.
I have this concurrently with GCA Giant Cell Arteritis which is an inflammation of the lining of the arteries most often in the head, especially the temples. It frequently causes headaches, scalp tenderness, jaw pain and vision problems. Untreated, it can lead to blindness. It basically reduces the blood supply to the arteries. A very nasty condition which became chronic in my case. This one is less common than PMR just my luck to get both.
Left undiagnosed PMR will contract all your muscles, put your immune system into overdrive and start attacking your internal organs and blood supply. It prevents you getting the necessary nutrition from your food as it constricts the bowel, affecting normal muscle action and starves the muscle of blood supply. The only way you can rest without too much pain, other than a head splitting headache is to lie in a foetal position and take pain killers. I went through all of this up to the last sorry set of symptoms, so many of which mimic other conditions we have all encountered. I had this for nine months before diagnosis. I also had full blown PE Pulmonary Embolism in both lungs for which I have to take a blood thinner. I am still unsure how that arose but it has now cleared. I still have to take blood thinners in case the cause is genetic.
Okay, so enough of the doom and gloom. I have been diagnosed finally and am under treatment. I will come back from this but have no idea when or what I’ll be able to do. That’s up to me, the doctors and time. The treatment is working spectacularly well and after 6 weeks I am now pain free and stable. The downside is the only drug that is fully effective has a weakening effect on the muscles and causes osteoporosis if used long term. It is a strong corticosteroid called Prednisolone. The reason for putting this out is not for sympathy but to inform. I do not want anyone to go through this. If it highlights a lesser known but very nasty and possibly terminal condition if untreated, helping someone to a diagnosis, my job is done.
As cyclists we adopt unusual body postures for five to eight hours at a time and train our bodies to tolerate these positions. We all work hard at trying to set our bikes up to match our individual physiques so that we minimise any discomfort. However, just consider your head position when on the drops. You are holding your neck muscles in permanent contraction. If you don’t stretch and massage after each ride you can develop a chronic condition called cervicogenic headache. The symptoms closely mimic Giant Cell Arteritis. You need to know which you have.
Cyclists and all people who exercise to their limits seem to have a higher pain threshold than people who don’t like to push their bodies to the limit. This is obviously an advantage when getting stronger or faster, but because of it we tend to shrug off warning signs which might be the precursor to a more serious condition. Pain is always a warning sign. Just try and be certain exactly why you are feeling that pain before working through it. I spent a lot of money and painful massage and correction trying to deal with this. Massage is your best ally, but if it doesn’t work you may have the nasty one. Fooled me for quite some time. You cannot train through this condition.
The disease takes over and forces the muscles to contract. Stretching only exacerbates the condition as your muscles are effectively locked in a contracted state. Hot showers morning and night together with massage are your best allies. They only relieve the condition but it helps. The cause of this disease is unknown. Main suspects for triggering the disease are stress and virus with a lesser possibility of early onset cancer in some form. I have had 6 years of bad stress and suspect I may have been exposed to covid when I cycled for two weeks through the hills in Almeria SE Spain early march 2020. I caught the last flight back on March 16th but didn’t show any signs. If I did have the virus it’s possible it acted as a catalyst for this set of conditions PE, PMR, GCA.
As keen, even fanatical, cyclists we are all more aware of our bodies and how they react. We are used to working through pain. We understand nutrition and what we need. But, when we get symptoms which don’t respond to our normal regimens of correction we need to stop and consider more carefully what might be happening. I am not a doctor nor do I have medical training. What I have is 30 years’ experience of putting my body through a continual challenge of gaining fitness and recovery after some very nasty accidents. Not very often thankfully but sufficient to teach me a lot about the body’s own way of healing. This is different. It turns your body’s armour against itself. You need to seek help. There are blood tests which can detect these conditions. It may take a few but early diagnosis is preferable to what I have been through. I put the stiffness and tight muscles down to getting old and the headaches down to a stiff neck. I could have saved myself a lot of pain and quite a bit of expense over ten years with osteopaths and massage.
Conclusions up to the present.
I think I am getting a handle on these two conditions and when it all started. These latter chronic symptoms have been present for nearly three years. Neck and shoulder stiffness, muscle contraction numbness in feet, legs and joints and bad headaches mainly from the temples and across the top of the head. Up until recently I have managed them through a combination of aggressive cycling, general manual work on the farm, osteopath, sport massage and some pills. Conditions like broken bones, DVT, and PE in both lungs had to be medically treated. The earlier signs of cramping and badly contracted muscle and neck stiffness go back some ten years. The osteopath and masseuse were always perplexed at how tight my muscles seemed to be, so much so it slightly pulled my spine out of its proper alignment.
In September 2017 I had an horrific crash which left me with broken bones, some skin loss and a seriously broken body. Something like Chris Froomes’ crash but with head injuries. It would have been nice to have the medical help Ineos provided him, but us ordinary mortals just have to struggle by ourselves. Nothing I could have done to prevent it. Brazing on the front forks dropout failed and the front wheel separated from the bike at 35mph downhill. Instant black out and no memory of the impact thank goodness. Lucky to be alive as I was cycling with a good buddy who called for help. A lesson for all of you lone cyclists. You never know when something might happen. By the way the Kask helmet was flattened on the impact side. I wouldn’t be writing this otherwise. Anything between your head and the ground is preferable to a smashed skull. A note to Chris. Boardman, helmets are essential. The head injury alone, long term concussion and damage to hearing, tinnitus, loss of balance and frightful headaches went on for the best part of a year. Any jarring motion made my brain hurt inside the skull, almost like it was swollen. It hurt to shout, sneeze or cough let alone shake it. My other physical injuries healed quickly as normal. Believe it or not I was back on the bike after 4 weeks but after a while the head pain and balance issues made me reconsider, opting for a few months recovery. I had two MRI head scans a year apart and they showed no bleeding or damage apart from age related deterioration. That was a relief. A recent scan has also come up clear apart from a small bleed which they indicate may have been a mild stroke undetected. I am due a full body MRI scan soon and hope that shows all clear. I suspect residual damage from the accident and want to check. Have had scan. All okay.
It took two years to get back to my level of cycling and fitness sufficient to ride for 6 continuous days from Pisa to Verona across the Dolomites in September 2019. I averaged 13mph over 550 miles with 55,000ft of ascent. Now I can barely manage 10miles on the flat. What I think happened is that I focused on recovery and managed any side issues passing them off as the result of hard training and recovery. After the Dolomite ride I was seriously tired and in need of rest. I was down to 68kg and looking rather starved. I looked like death warmed up you could say, not a good picture. It’s quite possible that I overdid the effort and weakened my body’s natural immunity. In March 2020 I stayed at a friends’ villa in Almeria, SE Spain, on my own and cycled through the mountains. I caught the last flight back in this pandemic on 16th March. I suspect I may have contracted Covid but showed no symptoms. If so the virus could have kicked off all the background conditions I had been ignoring as cycling aches and pains. If not that virus maybe another.
Is it possible these two conditions could have triggered the PE? Is it possible the serious hit to my head could have skewed the chemical balance in the brain and triggered the release of the PMR and GCA? This is speculation, but unless I can work out how it started I could be on these drugs for ever. Basically I seriously overdid the strain on my body and drained my last resource of resistance making me prone to anything waiting to pounce.
I started to get serious symptoms which were passed to specialists to diagnose. Everything muscular and internal seemed to be going wrong and no clear explanation as to why. It built to the recent time when my body basically was closing down. Like I said earlier, I was reduced to a foetal position out of bright light in order to get any release from the symptoms. That’s then to now and with the diagnosis I seem to be getting my body back. Nearly all the things going wrong are going right save for the residual symptoms which haven’t been fully suppressed. The leg muscles are almost functioning properly. I’m sure the strength is still there but they tire very quickly. Hopefully we’ll get there soon. Calves quite good. Glutes hurt worst but get better with use. Hams next but again recover well. Quads are next worst but improve. Worst are hip flexors. They are not used to striding. They need extra work. All improve as the drugs effect works for longer each day. It seems that the perfect balance is when there is just enough drug to last a full day suppressing the conditions whilst being fully used up just before the next days’ dose. Six weeks into treatment and I can confirm that nearly everything is working better.
I’ve decided to save my money on massage and correction as the effects are largely a consequence of the contracted muscle caused by PMR. Until the Prednisolone takes full control of the condition 24/7 there is no point in the palliative effect of massage relieving the pain. It only masks the recovery of proper function of the muscle. This is quite a relief because it now explains why whatever correction and massage I used always reverted in a few months to the need for more. I need to fully understand how this disease works at the neuromuscular level and how it interferes with the proper firing of nerve synapses to relieve the contraction. When the Prednisolone finally suppresses the disease it won’t be a cure. Without knowing the cause I will have to work to reduce the dose and work out an exercise regimen to regain my fitness. Only then can I determine to what level I can return.
Despite everything I’ve endured it has been a blessing in a perverse sort of way. I have known for years my body is not working as it should. Whatever I did I couldn’t get a handle on what was wrong. I was hoping for a miracle drug that would put it all right. Now I know what’s happened, the drug is no miracle, only something trying to stop my body going wrong. It’s actually given me a real understanding and a massive challenge to try and get back to an even fitter and better physical condition. It’s going to be an interesting period probably over a couple of years to regain even my old top level if that’s possible. This diagnosis has given me something to aim for with hope. In trying to understand how I feel both physically and mentally I am more alive today than I have been in decades.
Maybe it’s the relief from pain, or the belief that this unpleasant and worrying phase is under control. I genuinely feel better than I have ever felt for more years than I can reckon. After six weeks on the drug it’s almost fully suppressed the two conditions. My body is working better than it has in all areas, apart from stamina and being able to work all day not tiring. It may be a false euphoria caused by relief so I shouldn’t expect too much, but it is good to feel that there is real hope of a full recovery. The sad irony is this same drug that has saved my body destroyed my fathers from his condition 40 years ago. How times change with knowledge and insight. Someone of religious bent might be giving thanks to God. I cannot claim such blind faith. It seems like a miracle, but it is all down to observation, knowledge, understanding and sheer dogged determination to not let it win. I have been given a second chance to enjoy my health and fulfil the next however many years productively. A new start with a body that is working properly. What a gift at 70.
So, that’s it. I have put this out there for consideration.
I hope it may help someone who is in pain, depressed and confused not knowing why everything is going wrong and not being able to put a finger on the cause or the solution.
Hopefully you won’t have this, but if you do I hope this helps.
It is not the fact I had never heard of PMR until diagnosis, it is the fact that my GP did not seem to know about it either forcing me to see a rheumatologist privately!
That is fantastic. I had checked with Dr Google and asked if I might have PMR. The GP’s reply was ‘could be’. I have discovered this actually means ‘I haven’t a clue’.
All the GPs and medics around here (Guildford) seem to be very well clued up on both PMR and GCA so I think I must be in a very lucky position compared to most of those who post on this forum!
That's great to hear. I was diagnosed 8 years ago - hopefully knowledge has improved since then but it's still patchy as you can see from many of the stories on here.
Interesting post NewPMR! I’m in the US and I’d never heard of PMR. Happy I never had to actually 🥴. After diagnosis I met one other woman who had it and is “over” it today but she’s it! I wonder if years ago it was referred to as “rheumatism “ as just a general condition. I think because we’re older and while somewhat debilitating and is treatable by a cheap drug, there’s not a lot of interest in coming up with additional information about us although inflammation seems to be the basis today for so many things that ail us!
Sorry to hear you have this baffling and debilitating disease. Be assured there are lots of us 'beavering away', whether on here, volunteering on the Helpline, fund-raising for PMRGCAuk, running local support groups, giving talks to GPs etc etc. The Charity was only founded a few years ago and is reaching out to more people every day, I think it's done absolutely fantastically from a standing start. But there's always more to be done and hopefully one day with the knowledge you'll gain from this forum you'll also be part of the good work and making a difference to others too.
NewPMR I’m new to the group as well, been her since December.
I don’t think it’s unusual. After suddenly getting the symptoms and going to a local Urgent Care center was the first I had ever heard of the disease, same goes for my family and friends. I ended up in the ER two days later before the blood tests came back and meds prescribed. I’m a 65, male (in the USA), also with GERD on Prilosec (same chemical as you) , except at the ER they started me at 80mg/d (June 2019) even though I had no symptoms of GCA (still don’t) and now for all practical purposes I’m at 10 mg/d, split-dose. I read you are now at 15 mg/d and suffering. Call your doctor, s/he will most likely bump it up.
From what I learned from my Rheumy the disease is traced to those with a northern European hereditary, so it would make sense the Europeans would be ahead of other countries in recognition and treatments. My Rheumy appears not to be aware of a bit that I have learned here. Either because he’s young (30s) or dismisses research outside the USA. He isn’t happy I’ve dismissed the stair-step
approach / guidelines and been using DorsetLady’s Simple Taper but since I switched I’ve been tapering with NO side effects due to an immediate sudden step down to a new dose, nor have I overshot the dose needed to prevent pain (i.e., no pain 4-5 days after consistent new dose in week 5).
Unfortunately, I believe Cardiovascular disease and Cancer is in the mainstream, probably followed by Alzheimers and RA. The former because immediately life-threatening (?), and the later more prevalent (?). I’m basing this on commercials in the USA, overseas may be different. Since coming down with this disease I’ve read interesting and informative research from different countries. There is a recorded interview on this site that is very informative that addresses impact of certain Vitamins and Minerals.
Lastly (I’m covering multiple topics here), I’m on many social forums or groups (most hobby related), this one is the best for PMRGCA, but I’m saying this because there is a commonality, the presence of a diverse group of people, from a diverse set of cultures. I’ve adopted the approach that I assume everyones’ post is/was not intended to be obnoxious or insulting. Sometimes, someone may post something they think is humorous (intent) but not interpreted that way or the way they state something is read different from the intent.
I rarely take things personally, or easily insulted because of this approach. If I were, and felt it needed to be addressed I’d do it via private email and would be polite.
We all have different personalities. I’m blunt and to the point. Probably come across as an obnoxious know-it-all. I’m not,
and when I post I indicate info as “based on what I’ve read”, or “what I’m doing is”, or “ this works for ‘me’, and lastly “speak with your doctor” (I’m not, nor ever worked in a medical field. I have a UG in Biochemistry and back in the 70s work at a Cancer Research Center in an Immunology lab).
Bottomline, stick around, if you don’t feel comfortable posting, read everything you can here and what’s posted. If you find yourself more comfortable interacting with certain people, communicate with them directly.
To everyone else reading this, I got this via Facebook and trying to adopt it as a New Year’s resolution. #3 will be difficult because I have a low tolerance for stupid people or comments and unfortunately let loose. I think it’s good for everyone:
Before replying to someone (written or verbal) make sure it satisfies all 3 of these conditions:
1) It is TRUE
2) It is NECESSARY
3) It is KIND
And one last time, if one needs to call someone out on a post, please do it via a private email to that individual using the above criteria. PRAISE Publicly, CHASTISE in Private.
Warm regards, and Thank you to everyone who has sympathized and helped me learn and cope with this disease, it IS appreciated!
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