Diagnosed with PMR Jan 2017

Hi Everyone,

I'm new to this fourum and hoping to find more out on this awful disease as I'm really struggling to come to terms with it having always been extremely very active in every aspect of life.

For example my work in Security and Close Protection is very hands on and very active but now having been diagnosed with PMR I'm looking at a bleak futre in this line of work and I'm to young to even consider retirement.

Is there anything I can do to help fight fatigue and give me strength and energy.

Also if I have to give up work are there any benefits I would be entitled to .

I really am getting desperate now have been off work since the new year and while I seem to have good days I still feel like I'm going backwards on others.

26 Replies

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  • Greetings bigg8, welcome to this excellent forum.

    Sorry to hear about your situation - if it's any consolation, many PMR sufferers have to either give up work or scale down their commitments as a result. Like you, I (and many of us) were very fit and active pre-PMR, and unfortunately the nasty symptoms of this auto-immune illness don't seem to discriminate between those who were fit / less fit previously. As for the causes? The Jury's out on this one, but there are numerous theories including genetics, stress, infections and other co-morbidities. For some, it just seems a matter of a roll of the dice. Age is a factor, usually 50+ but with some exceptions.

    As for, Fatigue? Unfortunately, yes, it goes with the territory with PMR. Many here complain about it being one of the worst symptoms - besides the pain and stiffness (been there and got the T shirt..). With auto-immune conditions, extreme 'deathly' physical (and mental fatigue) are very common, and it really is a case of developing coping strategies for, as much as the clinical management of the illness. Sorry this probably isn't what you want to hear!

    No doubt you'll soon get tons of responses from really helpful and supportive PMR 'experts' here. There's no magic fix for PMR, but the forum is a goldmine of information and advice, as well as a bit of fun in between the serious stuff. My PMR started 2 years ago after a bout of Pneumonia, and the forum has been invaluable - far more so than my GP. I've made many friends here, and I'm sure you will too.

    As a first step, if you have the time and energy, I suggest that you start to trawl through the various PMR topics / posts (on the RHS) and just do some learning about the condition itself, typical symptoms, steroid tapering, outcomes, research studies etc. It's a bit of a steep learning curve but at least it will help you to understand how PMR works physiologically, and what to expect on the journey. Also, have a look at the official PMRGCA website where there's plenty of advice, resource material, details of local PMR groups etc. There's also an excellent book by Kate Gilbert - 'Polymyalgia Rheumatica and Giant Cell Arteritis - a survival guide' which is available on Amazon. I recommend it highly to any 'newbie' to PMR.

    On the positive side, although PMR is a long and tough journey (often 2 years or more), many people do come out at the other end. PMR isn't life threatening, but it is life changing in terms of people re-assessing their lives and capabilities - and often for the better. I can vouch for that :-).

    Finally, us blokes (no assumptions from your avatar..) are in a relative minority of PMR sufferers, so much of the advice you'll get will be from the girls! They're a nice lot, if a bit bossy sometimes (he said, retreating behind the sofa..) ;-)

    Hope this helps, keep us posted..

    MB :-)

  • Cheers for that Markbenjamin57

    From what you say has given me a better insight into this condition its already affected my life stylebhaving to get rid of my motorcycle not being able to hold the wighte of it and put it on and off the main stand.

    Has far as my work goes I have got an appointment with occupational health department to disscus a phased back to work program so here's hoping.

    bigg828

  • No worry bigg8, always pleased to help a 'Newbie' here.

    Your experience with the bike sounds like textbook PMR muscle-weakness - not being able to do the stuff you previously did without blinking. Similarly, I've found that even pushing / holding open my car door on a hill (if facing upwards!) is still an effort after 2 years. (Note to self about strategies to save energy: always try to park the car facing downhill!).

    The '50% of previous strength / energy / mobility' gauge is a reality for many of us, unfortunately. I think one of the hardest bits is Psychological for many of us in that we have to accept that we have PMR - and all that goes with it - and so need to re-assess our physical aspirations and capabilities in the meantime. It's not just a 'Man' thing - it seems to apply across the board.

    At the same time, many of us are in mid-to-later-life when we are 'got' by PMR and, by my logic, we would probably be noticing some degree of slowing-down at the best of times. Food for thought..?

    To put things in perspective, my family have just lost 2 precious men in the space of a week. One, from Cancer (at the tender age of 49, leaving a lovely wife and 2 children), and the sudden death of another (age 72, fit as a fiddle, but out of the blue). These two tragedies have reminded me that things could be much worse when I'm feeling sorry for myself with my various PMR challenges. (Another note to self: make the most of Today, even if feeling rotten - things could be much worse!).

    I see you've had some great responses from the 'Veterans' here (who shall be nameless). They, as I, have walked in your (currently uncomfortable) shoes. But you are in very good company here, and remember that things can get better as well as worse. To quote an old saying: 'Experience can be a great Teacher, etc'.

    Fingers crossed for you and good luck with your employer's OH Dept - you never know what might come of it..

    MB :-)

  • Hi MB, your comment on opening your car door is interesting. I have taken to always parking my car facing downhill nowadays for the same reason. In early days I had parked facing up a hill and I thought I would have to ask someone to help me, but there was no one around. After a panic I eventually managed the door, but decided it would not happen again.

  • Reminds me of the story about the actor John Wayne in a TV interview about his life in retirement at age 82. When asked about his favourite pastimes, he said "I still ride my horse most days - as long as there's someone around to lift me on and off of it" ;-) :-D

  • Hi Bigg8 - I am one of the ladies. Diagnosed in February this year. I am 60 - have 2 other auto immune diseases (thyroid and psoriasis) but I think my trigger for his started with working very long hours, stress! Then going on a lovely cruise where unfortunately was exposed to too much chlorine, the hand sanitiser on hands 3x a day before every meal, got sunburned and also stung by something whilst snorkelling - so there could be any or all these reasons. The pain for me was excruciating and debilitating - I was basically bedridden. Now on 20mg Pred since beginning Feb. I have also always been very physical and have relied on that a lot my entire life and so understand how hard this must be. I have not been able to work either.

    I try to be very careful with my diet - basically try to follow an auto-immune Paleo diet. I take vitamins esp Vitamin D and its co- factors, Viramin C, a good Vitamin B complex and omega oils. I have started going to Aqua Physio to get some strength back. The cortisone seems to have affected the ligaments in my knees as well.

    I am hoping my Rheumatologist will start tapering down my dosage thus week.

    It's a good idea to get that book - I found it invaluable.

    This group has helped me so much

    Good luck and gang in there.

  • Great Response and advice markbenjamin57.

  • Many thanks Slosh, glad to help :-)

  • Hi Mark

    I too being of the male gender see few males with PMR. However, the girls have tons of great advice.

  • Hi Alwayaheadache

    Thanks for your reply - sometimes it's difficult to know who are the 'boys' or 'girls' from their user names and avatars here! (but I can understand why).

    Yes, the girls have lots of good advice and personal experiences to offer. But us boys have a voice too and, maybe, a different perspective, sometimes at least?!

    Your timing is great, I'm just about to write a (not so serious) post about PMR symptoms, causes and remedies with tongue firmly in cheek - as usual.

    Watch this space... ;-)

    Many thanks and have a good weekend

    MB :-)

  • Hi Mark

    I welcome a sense of humor as laughter is sometimes the best medicine. Have a great weekend.

  • Hello bigg8 welcome to our exclusive club - not one any of us wanted to join!

    Life can be difficult enough without PMR/GCA.

    All I know is that I wish I had known about this site much earlier in my journey [now 26 months since i was actually diagnosed, but closer to 34 months since early symptoms].

    Anyway we are all here to support each other and you will bless the advice offerred, it helps with what questions to ask.

    Sorry I can't offer much advice on FATIGUE - as I am reducing pred at moment this is becoming overwhelming at times. All I know is to be good to yourself and try to ignore the frustration.

    Look after yourself and most importantly listen to your body.

    Cath 1602

  • Thanks Cath think its going to be a long hard road ahead in fact I know it is from how I've suffered so far.

  • Hi bigg8,

    Please find below a view of PMR GCA I've started to send to new patients.

    Some if it has already been said by others, so apologies for repeating, but hopefully it might help you get your head around things.

    Hopefully your OH team should help with work, but re-iterate to them that although you have a diagnosis you are not free of PMR, so what work you can do needs to reflect that.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.

    In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it's usually just the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. Serious sight problems can arise if the temporal artery is affected and causes problems with the optic nerve, if that's damaged then partial, or all sight can be lost.if your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids) it does not cure the problem, but it keeps it under control.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer.

    The initial high dose PMR,15-20mg, GCA,40-80mg) takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works. It's a balancing act, you don't want to take too much Pred, but you need to ensure you are taking enough.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not! As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have no return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg. Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about hour or two) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Rheumatology site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlookill.com) it's not about PMR but it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as pre PMR, so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help.

    Best wishes

  • "Is there anything I can do to help fight fatigue and give me strength and energy"

    To help deal with the fatigue pacing is essential:

    healthunlocked.com/pmrgcauk...

    "Give me strength and energy" is rather more problematic - there is no magic ingredient I'm afraid. Don't believe what it may say on tinterwebs!

    "I seem to have good days I still feel like I'm going backwards on others."

    Try keeping a diary - and it is very likely you will find that the bad days follow a good day: you do too much on the good day and pay for it later. That's where the spoon theory and pacing come in - but you can't borrow spoons from tomorrow, it isn't allowed! You may find you can rest up in advance but even that won't let you use 2 days spoons on one afternoon!

    I don't think any of us know much about benefits - beyond sick pay entitlement from the employer. However - PMR should come under disability regulations so the employer has to make reasonable adjustments. That won't help much if you have to be racing around after people but are there any roles in the company that are less physical?

  • Many thanks Dorsetlady and PMRpro

    The information that you have both given has with other information from other members given me a much better understanding in this evil illness I find really difficult has I have four children and try to give them all the support I possibly can and also partake in days out cycling or swimming with them.

    Just wondering if anyone can advise what questions I should put to my Occupational Health department in reference to this.

  • Hi there bigg8

    You will take strength from these encouraging replies. I was diagnosed with PMR in October 2015 and I must say it was a shock but in a strange way reassururing to know that my pain has a name! I found that not many people know about the condition. I reduced my hours at work and now swim 3 times a week and feel better for it. I work 10 hours a week now which is enough, also I find I can't work a full day as I am too tired, it's a nuisance sometimes to be so tired but now I just go with it and enjoy the rest. I found it better when I explained to the family that I can't now sleep on an airbed when I stay over and I get tired easily. I took part in research in a hospital and I will attending a PMR roadshow this month so that I can find out about the latest research, so it is encouraging that more and more is being done.

    This forum is amazing so just keep using it when you need to.

    Take care

    Cassie

  • Many thanks cassie1208

    Have been feeling a little more normal having read the many replies I have had since joining the group.

  • Glad to hear that!

  • I am so sorry to hear that your life has been massively changed recently by PMR. I wish I had something comforting to say, other than a simple hello and welcome.

    It's so strange that many of us report an active lifestyle before the condition came along, and I hear this was something that was discussed at the recent roadshow. I am determined to keep as active as I can within the limitations of the condition so that I can continue to enjoy my carriage driving, but it will be very different.

    I'm replying to your post because I have had to apply for PIP, Personal Independence Payment, having been already receiving benefit for some time after redundancy. My depression and assorted physical ailments were hugely aggravated with the onset of PMR which took some time to be diagnosed.

    And just before it WAS diagnosed I was assessed for PIP by a "so called" medical professional and despite that I could barely walk, dress, eat, get out of bed or into a car, my application received a FLAT rejection from the DWP. Nil points!!!

    To cut a depressing and frustrating long story short I have had to get my local MP involved and might yet, with luck, be approved for PIP. I applied in September, it is now March, and poverty has not made my life any easier.

    So I wish you all the very best of luck if you have to apply for benefit, and advise you to get whatever help you can before you go down that route, and even more help if you have to apply in completing the dastardly application. Living with PMR is hard enough to start with, the DWP is a nightmare, and you will need all the support, advice and friendship available on this forum.

    Wishing you all the best, xx Chrissie

  • Many Thanks for your information on this has it has given me more food for thought

  • I would advise any one who needs benefits to have their form checked by CAB (Citizens Advice Bureau), I was refused a benefit so took a copy of my completed form to CAB and they helped me write a letter asking for an appeal. Lo and behold I received another letter saying they had looked again at my claim and had made a mistake so I was awarded my benefit, back dated to the date on my original claim form.

  • Hi bigg8!

    I'm in the same boat...joined just two weeks ago. I haven't even been technically diagnosed with PMR by my Docs, yet had all the classic debilitating aches and pains before taking prednisone. I found out about PMR on my own.

    I'm also struggling to come to terms with this new way of life which for me isn't one that I think I'm strong enough to deal with. I'm single, alone, lonely and falling into deep depression. I'm currenlty out of work, don't feel well enough to look for work and stressed about the future which certainly doesn't help this condition! I'm also way to young (53) to retire..I don't have enough saved to consider it.

    The folks here have been very helpful! It's just difficult getting my Docs to listen to what I'm learning on this site.

    I have found that changing my diet may be helping?? I'm trying to keep to an anti inflammatory diet as much as possible! I used to drink wine every night (2-3 glasses)...I believe this makes my pain worse. I'm actually beginning to wonder if the amount of wine I was drinking contributed to the onset of this disease?? Would love to hear from others on this??

    I also use to be quite active...gym four/five times per week..elliptical, running and weights :(

    I wish I had more words of wisdom for you..just wanted to reach out and let you know you're not alone. I live in the US so can't even help re: benefits.

  • I have found I am now super sensitive to alcohol and caffeine, so no more brandy with Pepsi max, my evening medicinal.

    But I'm pretty convinced that an anti inflammatory diet is helping. I've never eaten so many seeds and beans in my life!!

  • Hi Zebedee44

    Thanks for the information I'm looking at all of what I eat very carefully and seeing what changes I can implement in my deit

  • Hi Bonning,

    Thanks for your comments on this because like you I'm way to young to consider retirement all though a little older than your good self but also consider myself far to young for this kind of illness.I'm now reading all the comments and looking at all possibilities.

    Sorry to hear that you are only 53 and like you I suffer with not being able to do all the action driven activities and simple tasks taken for granted.

    Many Thanks

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