Was diagnosed last year with polymyalga at age 41. They think stress brought it on. Is that possible what is other people's experiences?
My pain levels vary they where great when I was on 10mg steroid a day but they r reducing me and now on 5mg and can't seem to get lower. The weight gain has caused me such upset being on steroids over a year I have ballooned which is effecting my moods and every aspect of my life. I don't want to go out and am embarrassed to meet ppl as they only see the weight gain not the condition.
I feel I have aged 10 years in 1 year as long term pain has worn me out.
I have two wee kiddies and caring for them with the pain is so challenging. Some mornings I just want to cry... I work and I am struggling with the pain on a daily basis. My mum experienced a brain anurism at the time I took this and she is now very disabled and caring for her to is so hard.
I guess I joined here to seek support and insight.
I'm told the diagnosis is rare in someone my age. I'm told it may be short term maybe another year or so.
Many a day I feel I can't face life long term in this pain.
Just here to find out about other experiences. And help anyone else I can with my story and experiences.
Thanks TJ
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TJ03
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No wonder you have stress with so much going on. I'm no medic but the pros will be along I'm sure to advise. People that care about you won't worry about a bit of weight; you certainly find out who your friends are,with PMR, so be kind to yourself and take one day at a time. Pacing is the key and listening to the body. Plus this forum is amazing for info and advice and when you aren't alone everything feels a bit better! (I hope !) x
I'm sorry you are in pain. If it is physical pain you may need more pred, or it may be you have some of the "add ons" which sometimes come with PMR and can be managed through other means, like physiotherapy or certain types of massage. There are others who post here who know a lot more about this than I do and they will be along in due course.
Weight gain is a problem for many and is caused not just by increased appetite but also by the way we metabolize our food. Best to be very strict with oneself and avoid such things as white carbs (pasta, bread, etc), processed foods with their hidden fats and sugars, and too much fruit or fruit juice (again, for the sugar content). A little outdoor exercise if possible, even a daily walk, can go a long way towards turning around the weight problem, and also with improving our mood and general outlook.
Stress has definitely been the trigger for many of us. No one really knows what causes PMR but it seems that often unusual or extra stress is the straw which breaks the camel's back. Are you able to get some help with caring for your mother?
I'm really sorry, but PMR doesn't work that way. Pred doesn't cure the disease. It dampens down the symptoms so we can have a life. Eventually the disease will go into natural remission. In the meantime the best course is to take enough to feel as well as you are going to. For some people this is painfree, but for everyone it should be no less than 70% better. Then we work very slowly to reduce the dosage to the lowest possible level which still controls the symptoms. This takes months if not a couple of years. Then while the disease continues to run its course some of us can manage on a very low dose, like 1 or 2 mg. Others will need a bit more. We continue to attempt to reduce the dose, and eventually a time comes when the PMR pain doesn't build up again and we can finally achieve "pred zero". But the median time for this to occur is over five years. With a slow taper from the very start most of those years could be at a very low dosage with minimal side effects. Reducing too much too soon results in what we call a "flare" and having to take more pred than we would have otherwise. Slow and steady wins the race.
My doctor neglected to tell me that pred wasn't a cure. I had such a miraculous response I thought I'd be done and dusted in three months! But I soon learned this was not to be the case. It's been three years and counting so far, but for most of the past two years I've been between 2.5 and 1.5 and side effects are virtually non-existent. So far not able to taper off to zero, but the tiny dose keeps me functioning.
I guess I am probably my own worst enemy then. I hate medication of any sort and can't quite get my head round needing it and relying on it long term. The information you provided is very informative thanks. Even if a bit depressing. I'm a year down the line from diagnosis and still struggle to accept I may need meds long term.
You are not alone in hating to take meds. Our relationship with pred is very much a love/hate thing. Have a read of how I described my ambivalent feelings in earlier days:
None of us LIKE taking medications - it is a question of practicalities. Pred lets us get on with life rather better. And for you - you really do need more pred that will let you get on with what you have to do. I managed for 5 years without pred - not, I hasten to add, my choice - but I didn't have your responsibilities, I only worked part time freelance and I could spend a lot of time in the pool at the gym. I had a husband who paid the bills while I earned pocket money for us both.
TJ03 so sorry you are going through this and feeling discouraged. Tho 41 is young we have heard from a few folks in their forties. I was 51 when diagnosed. could you not be on enough prednisone? You should have 80% or more relief from pain. Then very gradually lower to the dose to the lowest point for it to control your pain.
With small children it will be very challenging to get the rest you need also. Do you have someone to share care with?
With this disease it is so important to pace yourself.
Yes weight gain can be discouraging. Those of us who have gone low carb and cut out all processed carbs (bread, sweets, potatoes, pasta) have actually lost weight. There are lots of low carb recipes on the internet.
Hang in there it does get better. Firstly get your pain under control. If higher dose prednisone doesn’t do it, then may consider that it may not be PMR.
Anything that upsets the immune system can lead to developing autoimmune disorders - no single factor, but repeated assults on the immune system mount up and eventually a straw breaks the camel's back. Stress is just one of many things - infections, injury, chemicals and so on.
To manage PMR you need a certain amount of pred - and if they force you to go too low for YOUR PMR the symptoms will return. This is a long haul journey. You say you were good at 10mg - how did you reduce from there? You shouldn't have reduced more than 1mg at a time at the most - that gives you the best chance of getting to a lower dose.
My goodness, you have so much to cope with - PMR, pain, your mum’s illness, young children, *and* you work! Are you superwoman?!
I’m new to PMR having been diagnosed a few weeks ago. I seem to be one of the lucky ones (so far!) in that the pred (15mg, now 12.5mg) controls the pain; I mostly feel ok (i.e. pain free and not too tired) but I do sometimes have a fuzzy head and find it difficult to concentrate.
I agree with what other people have said here - a low carb diet seems to help with weight gain. So perhaps you could try increasing the pred to help with the pain, and at the same time reduce your carb intake to counteract the weight issue. (I know it’s hard, but try not to worry about the weight issue just now - concentrate on getting the pain under control first, then you’ll have more energy for other things.)
I know exactly how you feel about wanting to get off pred asap, but as lots of people will tell you here, there are no shortcuts - you have to take it really slowly. If you try to reduce too quickly, it will set you back. The best thing is to take it slow, and take enough pred to keep your pain under control so you can have a better quality of life.
Can your GP sign you off work? It sounds as though you have far too much on at the moment and some time off work may give you some breathing space. Do your friends realise what you are going through? Are they aware of the pain and stress? Can they help you out? Maybe take the children for a couple of hours to give you a break?
You’ll get lots of support and advice on this forum, so don’t feel you’re on your own!
I already had time out of work last year and as the sole income at home can't afford to not work. My friends know but I don't think they understand what the pain is like. In fairness I know I wudnt have had insight into it either.
I had complete pain relief a while ago when on 10mg steroids. But when I reduced to 5 it's hit me hard.
It's nice to know I'm not alone. I feel very isolated sometimes and feel my friends are bored hearing the "I'm a bit sore to do that" line. I try hard to keep going for the kids and my mum.
I joined here to get support from ppl who understand.
If you need the steroids to help your daily life ,YOU NEED THEM ! ,Its not a matter of pride to get as low as possible .I felt like that at first and suffered the consequences but soon found it wasn't the way to go .I worked and I struggled and I felt alone .I found this site .It's here that makes you stop feeling you have to apologise for seeming to be egaggerating to friends who want to hear ''.Oh yes I am fine now ''.(As they tell you about thier headache) You are not fine and we know that .No one I knew seemed to be able to believe the pain and the disabling effects if we are honest you have to experience it to believe it don't you.We do on here so use this site to gain knowledge and understanding, this disease has no quick fix. Accept the help and the medication ,take time to rest even 20 mins here and there is of value in a busy or even not so busy day .I went from doing outside activities that were killing me at the time to sitting doing crafts with my grandchildren (haha Crafty move )I dont' know how old your children are ? Most of all stop being stoic and take care of yourself too. Make time for yourself .If it's any help It does get easier ,it takes time and you have to go with that but it does get easier eventually.The pred does take charge ,don't rush the reducing .
I know what you mean about friends not understanding - I had never heard of PMR until a few weeks ago, and I had very little idea what auto-immune illnesses were. If a friend of mine had PMR I wouldn't have had a clue how that would impact on their lives!
I wonder if, rather than saying to friends "I'm a bit sore" you should be honest with them? Tell them you're in a lot of pain, you're exhausted, you're at the end of your tether. Maybe print out some info about PMR, explaining about the pain, the exhaustion, the feeling unwell, having to pace yourself, and probably more importantly, explaining that it's not the sort of illness you get over in a few weeks. It would be good to show it to your boss as well.
I really feel for you, having so much to cope with. Things will get better.
My friends have had more stamina with support than my family! Learned recently my brother and sister have a support expiration date and I hit it Broke my heart because im divorcing and have two teenagers who shouldn't be burdened with this. You have a lot to care for my friend Im sorry! Find your support spot. I stopped following many groups recently for peace and its helped!!! Just online here, prayer and some trusted friends now. Big shout out to this group for all the real info and positive support! Funny how all the American sites left me anxious and confused.
Yeah I'm a single mummy to. The girls are my world and I feel like I'm letting them down cause I don't have the get up and go I once had. It's awful when u see others getting on with life and I can't do that for my girls right now.
I'm just living for the day it improves and they get the mum they deserve back.
They have the Mum they need now! Kids need primary attachment and you can do that with any ability! Love, listening, touch and emotional support are all things we can do, even on the worst days. The rest is fluff and you will get back to that!
Getting yourPrimary Doctor to take you off of work would be my first priority. You will benefit greatly from that. I find that fatigue was a helpful dialogue to assist me in that discussion and he agreed 100%. I had a wonderful GP. He saved me. The best of luck to you!
No wonder you feel overwhelmed. So much going on and so much stress - certainly a key factor for most of us pre diagnosis. Plus your ongoing stress with work, young children and your mother isn’t doing you any favours in managing the illness.
As others have said, you need help - whether that be friends, other family members or from outside agencies - I know you may not want that but you need to think of yourself at the moment. If you’re not functioning properly how can you be caring for others.
You’ve had advice about weight gain, but that’s all it is, you are still you underneath that and your children or mother don’t love you any less because you’ve gained a few pounds.
As was stated in another post recently - you need to look to Pred as your friend- it’s there to help your pain, okay it has some side effects we’d rather not have, but it’s getting you out of bed in the morning, and you need what you need- no point tapering below that amount! You get side effects but no relief from pain - and that’s a complete waste of time! You may have it another year, maybe longer - but you have no say in how long. The illness decides that, so take the medication you need to get through each day....it will get less as times goes by, but you can’t put a time limit on it. You have to learn to go with the flow.
Thank you. I was never good at looking after me. I'm run into the ground and regrettably have a very limited support network. I am good at putting a face on and certainly not good at asking for help. I feel very lost right now which is probably y I have come looking for this forum. It's nice to hear from others with insight and understanding.
I think many of us recognise that scenario - probably why we end up succumbing to PMR or GCA in the first place.
You will get plenty of support from people on here, maybe not physically, but certainly with understanding and empathy, which may help you a little. I do hope so, so please contact us whenever you want or need to.
You will get support on here...ask anything, you name it someone will have felt the same...I'm no expert....but dropping 10mg to 5mg in a year seems rather too fast to me..under 10mg it's gets tricky for most of us........your body will tell you with pain of it's not happy with the amount of steroid you are taking.....take it slowly.with reducing........and reduce the white carbs, at least you will think you are doing something about it.
Greetings TJ, and Welcome to the Club that none of us wanted to join.
Yep, you are an exception to the typical 'age 50+ for onset of PMR etc' Rule (assuming you have a reliable dx). But, as the forum Aunties (experts) and a few younger Others here will confirm, it's not impossible.
As for the causes of PMR? Well, there's no definitive evidence (that I know of) that any single factor triggers it. All sorts of things can feed into the PMR Risk equation including any or all of: Age, Gender, Ethnicity & Genetic pre-disposition, Family History, infections, Viruses, Trauma (e.g. major injuries) etc etc.
At the same time, many of Us PMR / GCA Lot here report a period of exceptional Stress prior to onset - me included.
Defo, PMR symptoms are often nasty Pain and Fatigue wise, and the Preds to have a host of side-effects for some (including the ones you describe). But for many PMR sufferers, it's a no-contest between being semi-crippled long term without them and enjoying at least some quality of Life whilst 'on' them.
Either way, you are in very good and trusted company here, with tons of experience, support and wisdom around all things PMR. And.. we have a few laughs along the way. It can help when feeling 'down' and desperate.
Hope this helps - best wishes and keep us posted on your PMR Journey
A period of unrelenting stress is common to a lot of PMR sufferers. It strikes me that your dose of steroids is not high enough to control the inflammation. If you are way better on 10 mgs then that’s your optimal dose and you should fight to remain on it until your symptoms settle. Your responsibilities whilst you are so ill are really too much, you do need practical help with your mum’s care and some respite from your wee kiddies to give you a chance to rest. You should talk to Social Services about assistance for your mum. I don’t know how young your children are, but I wonder if Nursery would give you some time to yourself?
You are young to have this diagnosis, I really hope it means that you can bounce back when it’s run it’s course.
The weight gain that many of us experience is very lowering. A lot of us talk about it on here. The very disciplined amongst us cut out the carbs and sugar and manage to control it that way. When you’ve too much to do and you are fed up anyway, this is very hard. If you are depressed ( and who wouldn’t be with your responsibilities) then you should seek your doctor’s advice. There are effective treatments these days.
Stick with us, this is a very supportive place to bring your troubles.
Does anyone also know if skin conditions are linked to PMR? Since I have experienced it I have also had severe psoriasis of the scalp and in my ears to. Sounds gross... Sorry!!! Lol. Is this linked do u think?
Is your doctor SURE it is PMR? If you have psoriasis then psoriatic arthritis must be considered too - they can start in a very very similar way. Skin problems aren't typical of PMR though.
Yes I am under a consultant. I will mention the skin condition to him at next appointment. I also broke my toe 12 weeks ago and it's hasn't healed. I'm not sure if this could be related. Now have swelling on two toes.
I have psoriasis and may have psoriatic arthritis also. And I was diagnosed with PMR at age 52 after 3 years of having adopted a teenager from an orphanage in an eastern block country. He didn’t speak English which is the only language I speak. I am single so was and am sole parent and income provider etc...it was amazingly difficult and there were times I thought I would lose my mind. Thus, I will project my situation on yours and offer my best advice from that perspective. It may sound a bit hard core but this is a time for hard core. First follow the advice that everyone gave you here about the prednisone, eating as well as you can, and getting support and asking your rheumatologist about psoriatic arthritis (alas it’s possible to have all three autoimmune diseases). Second: Forgive your body for its treachery at a time when you can least afford it. Accept in your heart of hearts that you have this ( or possibly another) disease as fast as you can possibly accept it. This is your new normal for now...although if you take care of yourself it will get better in it’s own time. Third: You must find a way to make yourself and your well-being a high priority despite your many responsibilities. That means finding ways of getting help. It does not mean expecting more from yourself as in “if I only tried a little harder”. Your body just told you it’s not accepting that way of thinking any longer. Although the physiological pathway is a mystery and may well have a genetic component, the long term stress almost certainly is contributing to your dilemma and your disease(s). That means you must make changes and you may actually have to be that person who asks for help! Especially help in caring for your mother. Not only once,but for the long term. When your friends/family say they want to help them you give them a list of options that are actually helpful. When your family or boss asks one more thing of you, you say “No can do. I have a disease that I am managing.” Something needs to change and it must start with you. 4) Treat yourself well! Find little ways of adding joy and peace to your life every day. I made it through to the other side and you will too! My best to you!
I also wonder if PMR is the problem? I was diagnosed June 2017 as having PMR by a GP, later confirmed by rheumatologist, who followed my case closely for 10 months.
Since April this year I have experienced attacks of angioedema when I lose airway (I am a rare case!). The last episode was very severe and necessitated 2 months of hospitalization. During that time extensive tests were carried out, after which a diagnosis of Systemic Lupus Erythematousus (SLE) was made. I am still on Prednisone 20 mg and slowly reducing, along with Mycophenolate. So far so good, but the point I need to make is that there were various symptoms I was experiencing, prior to the SLE diagnosis, that were more associated with Lupus but not identified at the time.
Scaly rashes can be associated with Lupus.
Best wishes...you are going through an extremely tough and testing period. You will certainly find support and understanding here.
Oh my darling girl my heart goes out to you. I will write to you later when I get my lap top. If yyfet time have a look at my story and please please know things will improve. Love and hugs. Linda xx
I know. I really do. I was a single mother with two kids and a severe illness. I had to work or we would have been homeless. I get it. Oh darling I promise you will get ideas and strategies here. The weight gain is depressing and horrible but we can help with that I promise. Xxxx.
You have had some wonderful support and suggestions here - and be assured we are all concerned about you and wish to offer any support we can. I see some have queried your diagnosis and/or your Pred dose. I also think it well worth checking those aspects - especially as you are obviously currently experiencing 'too much' pain. The point of taking Pred is to relieve pain and permit quality of life while we 'wait' for the passing of this disease. If you are not getting adequate pain relief then you need to find out why and should discuss his and the problems it is causing with your consultant.
I do feel for you with so much family responsibility when you could clearly do with much more support yourself. You are obviously strong and determined though and will get through all this in the end - but do seek out any extra help if you can get it and from my own experience people on this forum can be a fantastic source of this in an online context.
Good thing is as you are still 'young' you will have time to 'reboot' your life when this is all over and still have lots and lots of 'great stuff' to look forward to ...
Thank you for your kind words. I think I underestimate the symptoms and I maybe do need to start to realise I am going to have to say no and not feel guilty.
My friends family have little insight tbh and suport is limited from them.
I am due to see my GP in 2 weeks and consultant again in the coming months.. usually ever 12 to 14 weeks and will discuss diagnosis. He is very good and tells me to ensure I am on a dose that gives me enough pain relief. I'm probably my own worst enemy as I am tryi g to reduce but listening here I may need to realise it's not a choice I have right now.
I guess I'm also mourning my physical wellness and previous ability to conquer anything that came up. I'm physically much weaker now than I was. I have to sit down and rest more now and then other day my friend said.... nothing wrong with you but laziness. I was so hurt and cross.
Your friend obviously has no idea - like many people thinking if an illness is highly visible it likely 'doesn't exist' - regrettably this is a very common attitude - a bit of empathy or basic kindness wouldn't have gone astray though would it - I feel cross for you too!!
We all can relate to your feelings of grief for loss of your 'previous' self/selves - this is only human - but down the track you may rediscover so many elements you have missed or even thought you had 'lost'- and in a stronger form than ever - I hope this happens as soon as is possible for you !!
That friend is WRONG! She has no clue of whats going on, or of the impact the illness has on our lives.
This forum exists exclusively for the benefit of we who have GCA/PMR.
The ones who have been here longest are more highly informed and knowledgeable than many physicians we have encountered. Gradually the medical profession are beginning to come up to some level of understanding, but for Now,
PMRPRo, DorsetLady and our other Wise Ones are just a few of the experts on this forum who can help you walk through your journey.
Someone is here 24/7 to talk to...get advice from...and to hold your hand if you just need a friend.
Like you I'm trying to come to terms with this very dilabating illness, I also got told mine was very rare in someone of my age although older than yourself I was diagnosed at age 57 after being treated for a frozen shoulder for several weeks which just seemed to spread.
I got put on steroids and reduced from 30 mg down to 0 thought all was good then had a massive flare up and put back up to 30mg and now under a hospital consultant and reducing down again and at present on 4mg with a review at the hospital in Dec.
Please hang in there I know what your up against having been very active riding motorcycles which I can't do at present due to not being able to get on and off safely it very frustrating I know .
Yes - the younger you are they more unusual it is and the more likely that it might be one of the other possible options. PMR isn't the illness itself - it is the name given to a set of symptoms which can have different possible underlying causes. Since they include more serious things, including some cancers, it is important these other possible diagnoses are ruled out. The older a patient group, the more will have had/have PMR - which suggests there is an element of aging associated with it, you have experienced more of the potential triggers the longer you have been alive.
However - I think there are far far more people in their 40s with the PMR we talk about here than the doctors will admit. They are often fobbed off with "fibromyalgia" (a totally different cause and blood test pattern for most), "menopause", "depression", "somatism" - and, most pathetic of all, "I can't find anything wrong with your bloods so there can't be anything wrong".
PMR and GCA are closely related - opposite ends of a spectrum really. A young woman, in her late 20s I think, told us a few weeks ago she HAS been diagnosed with GCA. Another youngish woman was told by her doctor "if you were 50 and had these symptoms I'd immediately say GCA". So why not work on the "If it looks like a duck ..." principle?
I think it is appearing in younger people - and I do wonder if it has anything to do with environmental pollution and general exposure to chemicals. They are postulated as factors that can put stress on the immune system.
I can't add much to the advice you've received, but I will say that I find it difficult enough to cope at age 67 and with no work or family responsibilities. It's easy for me to simply go with the flow of the disease as I have nobody to please but myself. I can't imagine how much more difficult it is when you have so many varying demands to meet when you would probably just like to rest. Stay strong.
You are young to have this diagnosis and a high percentage of us on here can relate to high levels of stress prior to diagnosis. The first year or so is the worst and you feeling aged is the norm at this point. Ideally we say take plenty of rest and pace yourself with your daily life. I can see in your case you are not seeing it that way at all and you don't have that luxury as an option. To enable you to cope better you will have to take things slower doing what you have to do. Your mindset is not in the right place at the moment as you are wanting to get this over and done with quickly. That won't happen. If you don't make the adjustments you will take far longer to improve. You've had lots of advice already which is all saying the same. Take some time to think what you can do to help you and your Mum, at least make enquiries with Social Services and tell them everything as you've told us, you will be surprised what help is out there. Do you have a good friend that you can really confide in? We've all found that with this illness and I mean close family too just not understanding the illness and how it affects us. First of all you have to find the level of pred that gives you good pain relief and then reduce gradually, listen to your body, it knows best and you will get there. If you can find a little time in your busy schedule for yourself that will be most beneficial. Ideally you need not to work, would going sick be an option? at least for a short time to enable you to get yourself into some kind of routine that benefits all the family.
Wishing you all the very best and as you've already seen we are all in this together so sharing our ups and downs is normal for us. x
Hi there. What I am going to say is going to go against some of what has already been said - but that won't come as a surprise to many! The fact is that there isn't a fool-proof test for PMR. Diagnosing it is largely a case of eliminating other possibilities. You don't tell us where you were diagnosed, or by whom, or what were the key symptoms that led to the diagnosis.
For that reason, and that reason alone, we all need to be very circumspect in accepting a diagnosis of someone like yourself aged only 41. Do you really want to settle for a diagnosis of a disease where the average age of onset is 76 - if there is a possibility that there might be something else wrong? Especially when it means you might be on steroids for several years?
Good point Kate. And (if my understanding is correct..), PMR symptoms can mimic other health conditions: and so, sometimes (?) the initial dx needs to be re-visited later depending on the effectiveness (or not) of the Preds in treating symptoms.
I was diagnosed by a rheumatology consultant at my local hospital. My symptoms at onset was neck pain progressing to hip and thigh pain. It's very debilitating.
I have always taken the figure as "average age at DIAGNOSIS is 73" (3 years lower than you gave), and that age of diagnosis is skewed exactly BECAUSE a lot of younger patients are misdiagnosed - or not diagnosed. My own symptoms started at 51 - I wasn't diagnosed for another 5 years despite repeated presentation to the GP. I'm not alone - especially the younger people.
I have discussed it with a few top names in PMR/GCA - who agree it is a perfectly reasonable view. Sarah Mackie asked me recently what I though the most needed thing in PMR research - it is undoubtedly a definitive way of identifying the illness. But since there seem to be at least 4 different incarnations of "PMR" that is likely to pose a few problems
There was an article in the BMJ two or three years ago on how to “diagnose” PMR, really what they were saying is just discount everything else first. I am not sure if they had actually discounted everything else but at least the author had a stab at it.
I do think wording like “it only affects those over 50” does not help if you happen to have it at a younger age.
And when you read the medical literature in some detail there are warning all over the place about not missing the diagnosis because of being blinkered by one aspect of the presentation - be it hips/shoulders not being stiff, patient denying morning stiffness (which is probably because they are stiff ALL the time) or, above all, by their age.
Someone even said recently that they had been told they were TOO OLD. Really?
My Gp at my initial appointment suggested my pain cud be due to a raised bmi.... and at that point I was a British size 12 and a bmi of about 27 ..... I knew it wasn't weight related. That's y I kept going back. Then last August 3rd I cudnt get out of bed as was so stiff and sore.
Are most people worse in the morning? I definately improve as the day goes on.
I think it is fairly typical to be more stiff in the morning and then to find the stiffness lessens a bit once you get moving. I did aquafit before I was put on pred and that was the only thing that kept me mobile really. I could only do it in a warm pool - when the thermostat had a paddy I got straight back out and went to the steam room instead! Once your circulation gets going a bit the muscles often become less stiff - so at all points gentle exercise often helps. I even found that skiing helped the stiffness - the hip action was ideal to help the hip stiffness!
I think I would make a complaint about that GP - that is appalling.
I love the pool and love when I get time to go and swim. It's also great for my mood.
I try to wake about an hour before I need to get up and take pain relief so when I get up I am able to sort the kids for school with a bit more ease, otherwise we would never get left in time for school and work.
Have you tried taking the pred very early in the morning? It should take about an hour and a bit to start working. A study found the optimum time to take pred to reduce morning stiffness was 2am, so the pred is at a peak in the blood by 4am or so which is when the inflammatory substances are shed in the body and it is ready and waiting for them - they don't get to do their damage.
But do the pain killers really help? That is very unusual for PMR.
I think some doctors make things up when in fact they have not got a clue what the problem is. I must admit one young doctor said to me “I haven’t a clue what you have got but it is nothing serious and will go away”.
Hi TJ03, Being so young and having small children as well as a caring role must be hard indeed. I feel strongly that stress certainly contributes to this condition. I am 72 years old now, and was diagnosed May this year. I am carer to my 50 year old son who has had health problems since age 17 when he was diagnosed with a inoperable malignant brain tumour. 12 weeks of radiotheraphy zapped it, but was left with hydracephalis and has a shunt fitted into his brain to train fluid to Peritnium. At 26 this shunt blocked at we had a few tough years as he also had meningitis and a bleed stroke. 4 years ago he had to give up work as memory and cognitive functions were becoming impaired due to the long term side effects of radiotherapy. Also the shunt which was almost 20 years old was breaking down. He had multiple operations and new shunts following by a blot clot stroke. He was hospitalised 15 times and each time I was by his bedside for hours and hours at a time. I am positive all the stress of the last few years contributed. I am sorry to hear of your weight gain as I know it can make us view ourselves in a less positive light. I have lost weight on Pred. Was on 15, and currently tapering down to 11. Keeping off all the naughty but nice sweet tooth things I used to like. Please be kind to yourself and don’t let this weight issue define you. You are strong to carry all that you do on your shoulders each and every day. Please take care of yourself.
Hi TJ03. Firstly I really empathise with your situation.
I have read all your responses and have tried to collate the information in order to support you. So here goes......
Firstly was your pain in thighs etc bilateral? Pain on both sides is indicative of PMR.
You say you had complete pain management at 10mgs but not at 5mgs. Did you go straight from 10mgs to 5mgs? If so why? If so I am not at all surprised your body is kicking off. If not can you tell us how you tapered from 10 to 5? At around 7mgs (ish) your body has to start working the adrenal glands again and I understand this can be a problem for some. There is a test that can be done to check adrenal function. Since this is what could be setting you back I would advise you to ask your GP for this asap if you are still taking under 7mgs. However given your responsibilities you may need to simply increase your dose so that you are taking as much pred as you need to enable you to function at present.
Having both a mother who needed my care and two children and a husband with liver failure, plus working full time (Heateacher with no PMR at the time) I had to rationalise what I could change and what I could not, what was a job only I could do and what was a job someone else could do.
I decided to involve social services, since working in education I was aware of what an invaluable resource they can be. They provided a care package for my Mum and for my husband so that I could still work, (sole wage earner). Mum's care was means tested, but husband's care for critical illness was not. So they have all sorts of packages that you won't know about unless you talk to them and explore. Try it and you may be pleasantly surprised at the advice they can give. They will also know about funds for supporting disabilities (Mum) like carers allowance etc. I am not sure if this now comes under the universal credit umbrella. Anyway it is worth seeing what financial support is out there if working becomes just too difficult for the time being.
Neighbours had the kids often overnight in crisis situations with hubby. They also did the school run which was a big help.
Even with this support I did have to take leave from work eventually just before hubby had transplant and extended this for myself post transplant to catch my breath!!! GP signed me off so finances were not an issue.
If you are working your boss (company) has a duty of care towards you, and so must consider adaptations to support you (and your medical condition). So try to consider what changes in the workplace might support you better at present.
So a few practical options available if you are open to them.
In so far as friends and family.... try googling 'The spoon theory'. Print our a copy and if appropriate ask them to read it. Even if it falls on deaf ears at least you tried.
I do wish you well. You will get through this, but will experience peeks and troughs. The most important thing is to know that your kids will love you regardless! Having worked with children aged 5-11 years, and having my own now 20 and 25 years old, their resilience and acceptance of what is, is amazing. Perhaps we could take a leaf out of their book?
Yes the pain was both sides... both thoughts and hips. Although thankfully that appears less painful now. It's mostly my right arm atm and neck again.
I'm going to look that theory up thank u. My kiddies are 9 and 11 now and I am the sole earner so I have to work. I exhausted most of my sick leave last year at onset of the condition. My boss is very understanding thankfully.
I am myself a social worker so social services assistance doesn't faint me. Mum has a package of care but that o my goes so far I guess I place pressure on myself if I'm honest in respect of her care.
I feel reassured listening to others here and their advise and guidance.
Ha! Talk about preaching to the converted! Too many people think you guys exist just to threaten to take kids away into care rather than provide support for other circumstances. Well done and thank you for the invaluable, difficult job you do!
I place pressure on myself for her care.....'
Therein lies the problem methinks. We are obviously from the same mould! You need to prioritise yourself, and delegate (the jobs that othets can do) even if reluctantly just for a while!
I still don't know about you taper from 10mgs to 5mgs. Is it worth checking out your adrenal function with GP?
Yes stress is definitely a factor in this disease. You re carrying a very load and it's no wonder you are suffering. I know we can't lessen your burden but we can be here for you. We've all been through various stressors and can understand what you are feeling. Is there any way you can get some help either with your mum or with the kids? Take care
Hi Tj03. Just wanted to send you best wishes and to say how lucky your girls are to have such a loving mum. I have PMR, suspect it started when I was late 40's, had a massive flair this year which I'm sure was caused by the stress of my wife having a major mental breakdown. As the others have said please be kind to yourself. It has taken 6 months for me to get my head around the fact that I'm ill. Pre-PMR I worked full-time, spent weekends cooking, cleaning and being super-dad to my children, swimming, cycling, walking and picnics. The sad reality is I can't do these things at present. I HAVE to pace myself or I become even more ill and can then do less. As already said the Pred will dictate to you, again the sooner you accept this the easier it becomes, this is for a season not for life. As far as skin conditions go I have rosacea, this is a red rash around the nose and cheeks. After some recent research on this in which it was felt it was a red flag for issues with the immune system I have began making my own organic Kefir yogurt drink. You can also buy a good one at Sainsburys - The Colective Kefir cultured milk drink. This is definitely improving my condition, I've been very encouraged by the results. Might be worth a try? I really wish you the very best, Kind regards, Mike.
I think so. This started about 8 years ago, it certainly goes in cycles. At times it's very red and angry looking, and it burns, feels like acid on my face. At other times I break out in masses of spots (Oh the irony! I look like a teenager but feel like a pensioner) Tiss indeed a cruel, cruel life Pro! Various GP's have said it's rosacea, I was on a long term (Several years) low dose of anti-biotics to treat it, these seemed to keep it under control for a while but I stopped taking them when I started the Pred. As I said to Tj03 the yogurt I make is definitely helping, have been taking/making this for about 2 months, my skin is now looking the best it's been for a long, long time.
Perhaps consider seeing a dermatologist concerning a confirmation of the rosacea? The spots sound like it could also possibly be psoriatic dermatitis. Sometimes the last thing we feel like doing is seeing yet another physician, but it often pays off to have a range of medical perspectives. Glad the kefir is working for you!
I don't know if this will work for a different condition but one of my sons had acne as a teenager. First of all the doctor prescribed tetracycline but as none of us wanted him on antibiotics for years I was interested to learn of a folk remedy. Apply egg yolk to the affected skin. He started doing this, applying it in the early evening and leaving it on for several hours until bedtime. He didn't seem to mind and as I was curious how it felt I put some on my face one evening also. It felt deliciously cool. My son never had any further skin trouble. We would just separate an (organic) egg yolk, put it in a dish in the fridge, and he'd use that for about three days, then he'd start a new one. I don't remember how long he did this. It was a while, a few months perhaps.
When discussing this with someone years later she suggested maybe it was the Vitamin A in the egg yolk which made it effective. How did I learn about this? Our newspaper carried Ann Landers agony aunt column and one of her readers, whom I think may have been from the Middle East but I really don't remember, wrote in with this tip just at the time we needed to know!
Hi Heron. Interesting, I do vaguely remember reading somewhere about using egg yolk some time ago but sadly as like so much else it went in one ear and out the other.
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Broke my heart because im divorcing and have two teenagers who shouldn't be burdened with this. You have a lot to care for my friend Im sorry! Find your support spot. I stopped following many groups recently for peace and its helped!!! Just online here, prayer and some trusted friends now. Big shout out to this group for all the real info and positive support! Funny how all the American sites left me anxious and confused. 
Newly diagnosed PMR
Depression as side effect of long term prednisone use?
PRED ALTERNATE DAILY DOSAGE 
Can anyone advise on weight gain/loss?
