Falling over

Hello, I have recently been diagnosed with Polymyalgia after a year of pain and muscle weakness. I have made the decision to try to get through it without steroids (in spite of the risk of GCA) and have been following an anti inflammatory diet including turmeric tea, tart cherry juice. I use hot water bottles when the pain is at it worst which I find helps. I'm worried at the moment because I keep falling over. In May I fell breaking my ankle. 3 days ago having just been out of plaster for 1 month I fell again and broke the same ankle. Today I went out with my crutches which I am quite used to using by now and I fell again, luckily not breaking anything this time. My worry is that I may have some other condition that is causing me to fall over. I have noticed that I have also become very clumsy knocking things over and dropping things. Also I have bad shoulder pain in my right shoulder and very little strength in my right arm and I've noticed that I've lost an incredible amount of muscle to the extent that my right hand is much thinner now that my left hand. Until all this happened following several traumatic events I have always been very fit having practiced yoga for 20 yrs and more recently daily swimming since the yoga practice became too painful. I'm wondering if anyone has had any similar experiences or advice re falling over?

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  • Hi Maria, you must be mad not to try steroids. Why not take them for a week as a trial, you can always stop them immediately if you are not happy. You are leaving yourself open to problems otherwise.

  • Thanks for the reply. I'm aware of the risks and I've made the decision not to take them after much deliberation and I feel I'm getting on fine with the diet. My concern is the falling over and I don't think the steroids would make any difference to that in fact I believe they can cause further muscle weakness

  • I thought I'd go without steroids at first. It's madness. Maria, seriously, that's no life. Steroids let you live a near to normal life. Yes, there is a list of side effects but not everyone gets these. Apart from a little weight gain, i have had no side effects. Please don't continue to suffer like this without at least trying steroids. X

  • I agree - there are times I'm effectively a prisoner in my own home because I'm scared to go out for fear of falling over ... I'd give anything to at least have a week's trial.

  • To be honest I didn't post this to ask advice about steroids. My doctor is supportive of the way I'm dealing with this. As I said I'm getting on fine with the diet, my concern is the falling over. I've broken my ankle twice since May!

  • The steroids WILL make a difference to the falling over as your muscles will have a chance to work properly. I had PMR for 5 years without pred - NOT out of choice - and I fell frequently as well as dropping things on a regular basis, something I had never done before. When I was finally "allowed" to try pred and had the miracle response not only did it become obvious just how disabled I had become and how reclusive but my balance and walking improved no end and I stopped dropping things. I could use my arms and hands again.

    It is your choice - but if you choose not to try steroids then really you have to accept the downsides that includes. Pred CAN cause muscle weakness but targeted exercises will help avoid that if you are unlucky in that respect. I had myopathy with Medrol but haven't with either prednisolone or prednisone. PMR and inactivity will definitely lead to muscle weakness as well as weight gain - another pred side effect that can be managed well.

    If you just have PMR for a couple of years then maybe fair enough - but I've had it for 13, 5 of those years without pred. Nothing would induce me to go back.

  • It's seems that many people have PMA for many years, as many as 17 I've read. Why do they say 1 to 6 years for it to work itself through in the literature. Some people never get off the pred. I'm wondering if it's possible that pred could make it take longer to work itself through?

  • My grandmother had PMR I am certain now , she ended up bedridden with horrendous bed sores ,we had such a hard time trying to move her . After six months she was just given increasing doses of morphine till she passed away . I will take the prednisolone for the rest of my life if necessary as I could not turn over in bed or dress myself . Looking forward to holiday in Italy October thanks to pred .

  • I was initially told In January 2017 that PMR lasted about a year and would burn itself out by Christmas.

    HaHa.

  • I'm an eternal optimist. A positive outlook helps...

  • I'm a realist. I take what is and do with it what I can - which is quite considerable - even if I do say so myself.

  • I was told a year maybe two in Jan,know lot better now , I to am laughing.🤣

  • I have a friend who only had it for one year!

  • This is why "they" tell us, between 1 and 6 years. She was one of the lucky ones, but most of us will take at least two years and often longer. My doctor didn't even tell me that pred wasn't a cure. When I responded so miraculously I thought I'd be done and dusted in about three months!

  • Oh you must have been so disappointed

  • Honestly, Maria, that wasn't my reaction at all. I went online in the middle of a sleepless night and discovered the Patient forum, later this one, and felt I had fallen among friends. All I did was google whether I could increase my dose if I experienced increasing pain during my initial series of tapers. My doctor had told me to stop tapering if this happened, but not that I should go back to my last best dose. I got the information and support I needed from the forum, and somehow in those early hours began to understand that I was in this for the long haul.

  • Sorry, I meant disappointed at not being done and dusted in 3 months as you initially thought. It's good you found the right support for you.

  • I think it's true that it does take between 1 (rarely) and 6 years, but there are always outliers, and there also seem to be several kinds of PMR with different etiology (all still rather unknown). I've recently been conversing with a doctor who has a better understanding of PMR than my regular GP and even she kept reiterating that the disease burns itself out, as though implying my pain when attempting a recent taper was either psychosomatic or pred withdrawal. I eventually replied "in up to six years" and she acknowledged that I'd done my reading! So far my journey has been about 3.5 years, including undiagnosed, untreated 14 months. Had hoped to be done by now, but it looks like it's going to go on for a while. And at least "up to six years" is a more realistic outlook for the patient than the overly optimistic 1 to 2 years that some doctors are still working with and has often caused people to taper too fast and suffer flares that set them back to step one.

  • And, I suspect, tapering too quickly is what makes the PMR stay on longer, because the inflammation keeps coming back and accumulating, lengthing the clearing out process necessary for recovery.

  • A lot of people seem to have trouble with reducing the dose. I remember when I had asthma when I was in my twenties I was on steroid inhaler and nobody told me I should reduce slowly. I kept stopping and then I'd have a massive asthma attack.

  • Less serious than that, but I've had the exact same reaction when using cortisone ointment for skin conditions. These experiences make us wiser to the way prednisone should be reduced when dealing with conditions like PMR and GCA.

  • I've never had asthma but I know those attacks must be terrifying. No wonder you have bad associations with steriods.

  • It is fairly recently that they have finally accepted that about 5% have what they call refractory PMR - that lasts far longer. I have heard a few say they think there may be a few differing version s - as there are with multiple sclerosis for example. There are probably others who have repeated episodes though rarely more than 2 with years between. On average it is 5 years probably. I think the 2 years is an English-speaking world thing. Here in Italy it is accepted it may last years, one study found a third still require pred after 6 years and the standard German rheumatology textbook says average of 5 years - which implies some longer, some shorter.

    I don't think pred makes it last longer - mine didn't go away in over 5 years without pred. It felt like 20 years...

  • Italy? My family are from Naples.

  • I live in Val Pusteria, St Lorenzo di Sebato

  • hi Maria, I also resisted taking the prescribed 20mg of pred at the beginning opting for the lowest dose possible. 15months on I was told by very different specialists and independently of each other that by not taking the higher fos at the beginning that I had lengthened the duration of this illness. The 2nd one even put an eighteen month period on it. The first on was a complimentary practioner and really durprised me.

  • Hi

    I can understand your concern and hope things work out for you and it is a personal choice .

    But if things get to bad take the Steroids I would be bed bound and relent on family for everything if I did not take them.

    Good Luck

  • Thanks for your reply but do you know what? I'm managing the pain fine. The diet really helps and I use hot water bottles when the pain is bad. I'm more concerned with the falling over but people seem stuck on the fact I'm not taking steroids!

  • Hi,

    I think you've already got the answer in your first sentence. You may be falling over more because the inflammation caused by your underlying illness has the affect of not allowing the blood to circulate to your muscles properly. Over time they become weaker, less resilient, less able to support your body. In essence because the blood is not circulating around certain parts of the body/muscles etc they are being starved of the vital oxygen they need.

    By not controlling the inflammation suffiently, which whether you like it or not, the Pred will do (turmeric and tart cherry will not) your situation is quite likely to get worse.

    I genuinely hope your PMR goes into remission before any more damage can be done. I'm sure in days gone by many people got through it because it wasn't diagnosed, but what quality of life they had we'll probably never know.

    But as others have said, and I totally agree, it's your choice entirely.

  • Thanks Dorset Lady, I was thinking that might have been the reason. Do you think that could also be the cause of my recent clumsiness and bad coordination? I'm wondering if I should tell the rheumatologist in case I need more tests. The muscles in my right arm and hand have really deteriorated as well.

  • Have slightly amended my post, probably after you'd read it.

    How come you are seeing Rheumy yet not following his advice - presuming he did suggest Pred?

    As for your other problems - could well be connected.

    As a matter of interest why are you so against Pred? Not trying to convince you, but interested.

  • I'm just one of those people that doesn't like to take pills. I'm quite in tune with my body after 20 yrs of yoga and meditation and would rather not throw some aggressive drugs at it. I would rather experience what's going on in my body so I know where I am. Im aware of all the risks but I don't want to go through all the process of weaning myself off steroids and the relapses as well as further muscle weakness. I know lots of people think I'm mad and whacky as we can see from the replies but this is the way I am. The rheumatologist did advise steroids of course, and so did my doctor because they must follow protocol but they also respect the fact that I want to get through it without. The rheumatologist advised me to stay vigilant for unusual bad headaches, changes in vision etc and take myself to a & e immediately should I get any of those symptoms. My doctor said to me Ginetta, I will support you in whatever you decide to do which I appreciate. People do get through it without and if you are basically pretty healthy in the first place then I believe I stand a good chance.

  • Ok, that's fair enough. And I would back your decision to the hilt, like you, I was always a bit "don't want to take pills " until I had to!

    But just a word of warning, left untreated -and I mean by steroids - there's always a chance you may get GCA. So heed your doctors advice re head pains.

    I wasn't so lucky, I had undiagnosed GCA for 18months, GP thought it was frozen shoulder and treated it as such. My headaches were attributed to a trapped nerve from "said frozen shoulder" - only they weren't.

    I was finally diagnosed in A&E on a Saturday afternoon when I lost sight in one eye. Never heard of PMR nor GCA. Started on 80mg of Pred to save other eye - fortunately it did! But if I'd had the choice I would have swapped 15mg of Pred at the beginning to 80mg and irretrievable sight loss 18 months down the line.

  • Gosh I'm so sorry, that sounds awful and scary. I can see why people think I'm mad and probably naive, but I don't know it's seems every cell in my body is resisting and screaming 'no!' I'm taking enormous care of my diet and avoiding stress (which has led to me making some positive decisions i.e. to eliminate a couple of very toxic people from my life.)

  • I was about to write in a similar vein to DL, and I speak from experience, having fallen over several times in my undiagnosed days and shortly following the start of treatment. On one occasion, my leg just completely and suddenly gave way with no feeling in it at all. You say that your Dr is fully supportive of your wish to forego steroid treatment but what has he said about your balance problem? For instance, has he looked inside your ears to see whether there is a build up of wax deep inside the ear or anything else which could lead to a balance problem?

    I do wish you well and especially avoidance of GCA due to non/treatment of PMR because I wouldn't wish my symptoms of daily vomiting, weight loss and the mother of all head pain on anyone following my experience of non-diagnosis of PMR.

  • Sorry to hear you've had such an awful time. I know I'm taking a risk but I've made my decision for now. Not to say I wouldn't take them if things worsen. No my doctor didn't check my ears or anything else for balance problems though I was tested for MS, rheumatoid arthritis and many other things until I was finally diagnosed. I may make an appointment.

  • There is some evidence already that balance problems are a symptom of GCA affecting the blood supply to the ears - it isn't just the eyes it affects - and a study is underway.

    If it is GCA you have then there are a lot of problems that may arise if you choose not to take steroids. Loss of hearing and vision are just two possible aspects. I'm not saying this to scare you - but presenting the other side of steroids for PMR/GCA.

    It really isn't a simple case of pred bad, no pred good. And when people have said "take steroids" it is because they are aware that a lot of things they thought were nothing to do with PMR were in fact side effects of PMR/GCA.

  • I do sympathise. Unlike you I've been taking steroids for 17 years - though I resisted on the same grounds as you for the first few months of diagnosis but eventually spoke to a homeopath who advised that PMR was one of the few conditions for which she wd recommend conventional medicine.

    However, on falling, I've fallen twice recently, and GP doesn't think it's attributable to steroids but to a problem with balance. I'm going to take some gentle Tai Chi classes to see what this does. I'm taking a stick when I walk and being very careful. People have also recommended Nordic walking poles. I've also discovered some exercises one of which involves standing on one leg for short periods. Just as well I live alone otherwise it might be though my brain had gone too!

    But I think the steroids have saved my life.

  • When I get out of the plaster and off the crutches I may well start taking a stick as these falls have damaged my confidence. Before I broke my ankle 3 days ago I was doing some yoga balancing postures for that very reason and in fact my balance doesn't seem too bad. I think it's more down to weak muscles from the polymyalgia and also from the last time I broke my ankle. Tai chi sounds like a good idea and I might try it although I don't have much mobility in my right arm to do those lovely circular movements. Good for stress too. I may well end up taking them but for now I'm going to stick to my decision in spite of the risks.

  • Try Pilates - builds up your legs muscles whilst you're lying down - definitely a winner!

  • Pilates sounds good! I might try. Yoga's tricky cos I can't do 'down dog' without enormous pain in my shoulder. I was getting on really well with swimming and it was slowly releasing my painful shoulder but I can't do it, or much in fact with my ankle in plaster!

  • I used to do Yoga pre GCA, but now have arthritic knee so find standing poses quite difficult -and tree pose nigh impossible! Started Pilates about 2&half years ago whilst still on Pred as a way to try and improve my leg muscles - really enjoy it!

  • I do so love my Yoga and it feels like a real loss at the moment. I still manage a little bit but I think I'll try a yoga class as I'm worried about muscle loss. Somebody mentioned Tai chi which I ve always wanted to try.

  • Maria, it was Tai Chi which I attribute to slowly sorting out my balance problem. Tai Chi with an element of Chi Kung is the perfect mix.

  • Yes, somebody else suggested it too and I've always wanted to try it. Is Chi Kung more to do with healing?

  • Yes, I believe qi gong is for healing, tai chi is a variety of qi gong.

  • Hi Maria, before I was diagnosed with PMR I had never had an anti biotic, never had paracetamol, never had indigestion, never bought any OTC medication.... I really did not want to take steroids, as I felt like you do, I don't take pills. However in hindsight I discovered that pred is a wonder drug and I have come across two homeopaths with PMR who took pred in the end having resisted it. Without it I would be leading a really miserable life, particularly as I hate pain.

  • I'm glad it's working for you. It's a personal choice for me. Luckily it's not making my life really miserable, though obviously it is limiting me which I can accept for now. It's already been a year and I haven't found it has got much worse.

  • I don't mean to be sharp with you, but If you think breaking your ankle twice in 3 months is avoiding stress, if you think that's less damaging somehow than the side effects of Pred,I think you've got more trouble coming.

    PMR is a serious disease. It's not like getting a cold or the flu where you take some supplements and drink some chicken soup until you feel better.

    The inflammation is already doing a visible number on your body - weakening your right arm and hand as well as effecting your walking/balance. That's only what is visible, mind you.

    You aren't sufficiently controlling the inflammation, and that inflammation is coating the insides of your capillaries, veins and arteries, and maybe your aorta too, and won't go away with some acai berry juice and kale.

    Pred isn't good for you. We get it. We take it. We don't take it because it's a pain killer. (It isn't.) We take it because it is the only thing currently available that gets and keeps the body-wrecking inflammation under control.

    It is your decision to make, and if my tone is too sharp, I apologize. But I would feel terrible if I didn't try to make you see that this plan of yours isn't working because I didn't know how to tell you nicely.

  • Steroids will not stop me falling over or breaking my ankle in fact they can cause additional weakness. I haven't mentioned kale or akai berry juice have I? (I believe you're stereotyping me here!) but I believe it's proven that tart cherry juice reduces inflammation as well as other foods. I have in fact read quite a lot about it and I am aware that pred is not a pain killer (I believe it suppresses your immune system) so I am aware of the risks as I've said. It is personal. Who knows I might change my mind but for now, no.

  • Hi Maria, out of interest have you had any recent blood tests to check your inflammation levels, vit D etc? Also have you had a Dexascan? That will tell you if your body has any weakness you need to build up.

  • Yes, my vitamin d was low last December but is now normal. My ESR 2 months ago was 52 and I'm having it checked every 2 months. I had another test which measures inflammation, I can't remember what it's called and another esr this week. I should have more results on Monday. My intention is to keep an eye on it. I believe GCA is more common with ESR 50 plus, so I'm only just over. My bone density I've just had done and is normal.

  • Then steroids probably wont effect density if you do right things.

    At the end of the day if you felt bad enough and enough pain then you seen the relief.People are supported the pred approach because it works and gives back lives. If you don't feel like it has impacted on your life that much then you are lucky. Oh and a lot of people"s eat and crp never stray out of normal ranges for pmr/gca.

  • Thank you for saying that about some people's tests never straying outside of normal ranges for PMR/GCA. Boy have I had rows about this with my doctors. One told me it is in my mind - all the pain, the falling, the eye closure, the sight loss, loss of balance etc ... I've lost a ton of weight despite eating like a pig ... yet they say it's only .5 of a point below what would indicate PMR ... I keep saying that is too close for comfort but they refuse to treat me. I'm sick to death of falling over ... sorry, I don't mean to hijack this post - your reply just struck a nerve. Thank you!

  • Gosh that sounds awful. Poor you. It doesn't look as if you're being taken at all seriously. Can you get another opinion? I had to see 2 doctors before getting the correct diagnosis. Apparently the ESR tests are not always a good indication. I know what you mean, I certainly feel more anxious about going out now having fallen 3 times and broken my ankle twice.

  • Hi Maria_2013, Thanks for your reply. I keep trying to get another opinion. The only doctor who suspects PMR says I'm too young for it statistically. I pointed out that's all it is - STATISTICS. It does not mean it's impossible to suffer from it when you are younger (I'm just turned 50 - he told me he suspected PMR when I was 4 weeks from my birthday and he'd retest after I turned 50 ... Apparently I have a good 10 years before the doctors think I'll be considered as having PMR. My eyes are closed almost permanently (Doctors 'suspect' GCA but won't do anything about it). I begged for a week's trial on Pred after a major fall but they said no ... it's driving me insane and I'm beginning to suffer depression. I've asked for a referral to a rheumy but they say it's a waste of time! I currently can't afford to go private ... :(. I'm thinking of you and sending you (and everyone else on here) hugs XX

  • I have heard of people having PMR at fifty and even in their forties thoughthat is rare I think. I went through a really bad depression last year. Awful. Awful. It's crazy if the doctor suspects GCA but won't do anything about it. I would definitely get another opinion. I wish you luck.

  • Forgive my ignorance here because I'm an American, and our health care system is totallly different, but couldn't you go to a emergency room at a hospital? If it is GCA as you suspect, maybe they could diagnose you and get you on pred, then make the proper referrals for ongoing treatment?

  • My gp told me if I get the gca symptoms to go straight to accident and emergency .

  • Yes, same here.

  • Was it CRP you had checked? It is supposed to be a slightly better inflammation measure than ESR nowadays.

  • I be just had ESR and CRP tests done. Results tomorrow or Tuesday.

  • I'd like to point out that just because I've taken the decision to try and get through PMA without steroids, I absolutely respect people's choices and am in to way judging anyone. It's been an interesting conversation. Thanks.

  • Thanks Maria, I'm certain that everyone here has an interest in any approach to successfully managing and surviving PMR - whether conventional or otherwise.

    As you say, it's good that we can share experiences and opinions here without being dogmatic or judgemental of others - that's what it's all about.

    Of course, for some PMR sufferers, there will always be alternatives to taking the Preds depending on people's personal contexts and health circumstances, so please keep us posted whatever!

    Final note: I've found that the PMRGCA HU forum is a goldmine of expertise and advice - but it's also a platform for people to compare notes and experiences. Long may it continue...!

    MB :-)

  • Thanks for your reply. I agree, a lot of interesting information on this site. I will definitely keep you posted. I must say I have been surprised at the strength of feeling.

  • Thanks Maria.

    Yes, PMR - and the variety of possible treatments for it - is a controversial topic with many conflicting views, attitudes and experiences.

    I think the strength of differing opinions here reflects the strength / intensity of how much PMR impacts on our individual / personal lives? So, no wonder there's a 'healthy' (excuse the pun) debate about what anyone believes works best for them! ;-)

    MB :-)

  • Yes I absolutely sympathise if someone's pain is intolerable and perfectly understand why they might choose to take steroids. We do all have have a choice and for me it's important to respect people's informed choices even if we disagree with them. We are all different.

  • Hi Maria, the reason I have strength of feeling and probably a lot of others here too, is that I feel you are affecting your health and do not want to see you have major problems.

  • hi Maria

    I really appreciate you wanting to treat this condition without pred.

    like others so believe your falling over us a symptom that PMR is still very active and effecting your muscle and joint. it's an immune disease and you body is attacking itself. The inflammation can attack you heart and other parts of you. Without getting control of the inflammation with the ONLY certain thing that treats it you are allow your body to carry on attacking itself. The thing you are doing might keep you ticking over but what happens when your legs give in one day crossing the road and some poor driver hits you or you severely injure your head or other parts of the body seriously.

    I spend 10 years using diet, kinesiology, accupunture, Pilates homeopathy, physiotherapy, reiki therapy, Crystal therapy. I had an empty bank balance but failure to treat one autoimmune problemm properly has meant I now 3 autoimmune conditions and neuropathy/ fibromylgia/chronic pain.

    I can only wish you luck and hope you body stops damaging itself soon...but it looks like it's having a bit of a protest.

  • Yes I know I'm taking a risky route, but did you know you still have a 30% chance of developing GCA if you are on steroids? Yes I'm looking forward to seeing if my ESR has gone down. Personally I'm finding diet helps, and also acupuncture. I'm dubious about crystals etc but I suppose it's good to keep an open mind!

  • Yes but are you keeping an open mind regarding pred? I worry less about GCA at present and more about the fact that PMR itself can cause atrial fibrillation and can attack muscles leaving them unable to repair as quickly or as well as non-PMR muscles.

    The reason people are concerned is because they have experienced the worst of PMRGCA.

    I have a more pragmatic approach to my health and you are at present being very fortunate. A hot water bottle for the pain I experienced pre and post diagnosis would not touch it....and didn't when I tried it. That's why people are aghast. Hopefully your pre PMR body carried you this far. Perhaps the falls are your body trying to open your mind. 🌻

  • People are 'aghast' are they?! Well I think that's a bit hysterical. There's a very good book by Kate Gilbert on this which I'm sure you will have read. I have made an informed decision (with an open mind don't you know) on how to deal with my PMA which suits me. People do get through it without pred. If you read my initial post I was asking people about falling, not advice on treatment. Each to his own and respect for people's choices is important.

  • totally respect your choice. Just trying to explain why people bumping on about pred rather than falling. I think people just concerned for your health not your decisions.

  • or rather...i was concerned that falling was indication that PMR attacking your muscles. Other people can explain for themselves so apologies to "people" for summarising.

    Every one has their own journey and draw their own treatment lines. Personally when someone is so critical of the thing that has stopped me being bed bound I get a bit upset and take it personally. That's my problem not yours.

  • I can understand you feeling upset. It's clearly been awful for you and perhaps I'm lucky as it's not made me bedbound. But to be clear here, at no point have I criticised anyone for taking steroids, or the use of steroids as a treatment. I wouldn't dream of doing so! All I have done is make a personal choice.

  • A friend of mine has cancer and is refusing chemotherapy. I accept her choice and wouldn't dream of lecturing her causing her additional stress. We are all different. I am well aware of the risks, in fact I've made a living will to deal with any unfortunate consequences. It's a personal choice. If I said it was a religious choice would that help? It's not however but that is how strongly I feel about it. I'm feeling rather patronised.

  • Me too.

  • I can see that you feel I'm criticising you for taking pred but I absolutely assure you that I'm not. Im not judginganyone.

  • Please don't misintepret our sincere and deeply felt concern for you as lack of respect for you.

    I feel as though I'm watching you head into the surf for a swim carrying one of those flimsy inflatable rafts, with the tide going out and a stiif offshore breeze blowing, and you're walking into a rip tide that will carry you far away from shore. And if I don't shout a warning, Im not being a responsible person.

    The weekend before the onset of my PMR I was unloading 50 lb sacks of topsoil out of the trunk of my car and carrying them to the back of the yard. The day before, I was running after a bus down the second highest point on the Eastern seaboard of the US, in four inch heels carrying a briefcase in one hand and a computer in the other. Within a week, I didn't have the strength to bring myself to a sitting position in bed. It wasn't just the pain that stopped me. It was the weakness. I was always the one who was never ill, and even when I was, still did everything I needed to do just the same.

    It may be that your PMR has not reached that stage, and maybe it never will. My sincere hope is that it will not, because it was like being a prisoner inside my own skin. Months in, I'm still struggling to walk properly, and am very worried that I, too, will take a fall and cause further damage, maybe permanent damage. Summer is ending, and the ice and snow are only weeks away. Navigating that in this condition is going to be very tricky.

    Even if you don't like me for it, I would try to spare you the pain, suffering and collateral damage that the tests and the doctors can't see. The more inflammation is in our vascular system, the more damage is being done. Some of it may be reversible. Some of it is not. A good diet is always the key to health, but whether we can consume enough through diet of what's needed when our systems are our of balance is questionable. And the damage we do just living with the condition while getting through the day - like pulling a muscle, straining a tendon or breaking a bone - takes longer to heal and puts more stress on our already overloaded resources.

    I wish you all the best

  • Hi Maria

    I think you seem to be misunderstanding what people are saying.

    1. No one has criticised you for what you feel is an informed decision on your part. They are just concerned about your health.

    2. People HAVE replied to why they think you have had several nasty falls and you seem to be ignoring the fact that they are saying it is very likely caused by PMR. The only suggestions made was that you give pred a try for a week or so. No one gives advice on treatment as such as we are not medically qualified. People may just give information about their own experience.

    3. As far as I have read so far no one has said that you are criticising them for taking pred. I am not sure why you think that.

  • Maybe you should read through it again. Interesting that you speak on behalf of people not having read through it all yourself.

  • Hi Maria, it seems you are making incorrect assumptions again, I have read through this thread several times.

  • It wasn't an assumption. You said 'as far as I have read so far'

  • Hi Maria, for goodness sake, I am not trying to argue with you.

  • But only if you are not taking a high enough dose to the control the inflammation caused by the underlying PMR.

  • I am not going to tell you that you should take prednisone but wanted to share my thinking on my own situation. I also tried ginger, turmeric, cherry juice. I was quickly losing range of motion in my shoulders and hips, pain in my neck. I also lost strength and balance. I was having a great deal of difficulty caring for my family and doing my job. I was very scared thinking the worst as I tried to get a diagnosis. Once I knew that this was all due to inflammation I decided to follow doctors advise. I not only needed to be able to work and take care of my family, I was terrified of the unchecked inflamation causing cancer, heart issues, or a stroke.

    I would urge you to keep close track of the inflammation and have the doctor watch for other issues it may cause. A physical therapist may be able to carefully build up strength. I used one initially to regain range of motion in my shoulders through massage and stretching. I am currently working at a therapy office on regaining overall strength and balance through an exercise program in a pool. The water supports you and helps keep you from getting hurt. I know that's impossible now, but maybe when you are out of the cast. In addition I use massage to deal with muscle knots. I figure if one side or the other is tight it will affect the way I move and function.

    Good luck on your journey. Keep us posted.

  • Thanks for your response. It must be so difficult if you have a family to look after and work as well. I'm lucky in that I don't work and my family are grown up but if it gets too bad I may well end up taking pred. I too have found swimming very good for increasing the mobility in my shoulder and I'm frustrated a being unable to swim at the moment. I'm having my ESR measured every 2 months as well as the other test for inflammation the name of which I can't remember and an MRI scan on my neck mid September.

  • As an old competetive swimmer, I can tell you that you can still exercise your arms and shoulders while standing and bending from the waist, and making the swimming motions wearing wrist weights. As for your legs, lying on your back on the floor doiing old-fashioned bicycle kicks will strenghthen your legs and keep them flexible. I use ankle weights for this, too. Mine are 2 lbs.

    All this strengthens the core and back, too.

    Don't overdo, though, The initial aim is to keep the range of motion and flexibility. Endurance comes with time, not too many reps to start. Move slowly and extend fully, and stop one or two reps after you start to feel it. You don't want to start an inflammation cycle or cause a strain or injury.

  • Thanks Grief, As soon as I'm out of plaster I will resume my daily swim which I really felt was doing me good. Bit difficult to do bicycle kicks with my foot in plaster! I might get some weights, good idea.

  • Yeah, well, you could think of the plaster as one of the wieghts!

    Do what you can. Don't push too hard. The aim is to stay where you are without losing too much ground.

    And acai berry juice is delicious!

  • Hi again grief, I'm just wondering what size and type of weights should I get? Can you advise me? I'm female about 10 stone. Can you get weights that go round your wrists as my grip isn't good these days and I don't want to knock myself out with one.

  • Here's an Amazon link to something similar to what I use.

    amazon.com/s/ref=nb_sb_noss...

    There are others that use weights of 1/4lb, and that's the kind I use. But from this you'll get the idea.

    Note that being able to increase or reduce the weights has been helpful for me, as some days I have more discomfort on one side or the other And when all points are feeling good, I'll do more reps at a lighter weight, or fewer reps at a higher weight, alternating days.

    I've also done all the dumb stuff like doing more than I should, and causing more damage than good, so take it easy. I keep reminding myself that what I'm after is maintaining range of motion, with strength and endurance to come in its own time. And make sure you warm up before you start and cool down after you're done, even if you're only doing a few. PMR already has enough inflammation in your muscles and boodlines. You don't want to induce more.

    Take it slow. Try to be graceful. And dpn't try walking with these things around your ankles until you're really, really, really confident about it.

  • Thank you that's great advice. I'm going to get some weights. Yes, I've made the same mistake; done far too much when I've been feeling ok and then regretted it. It's a hard lesson for me to learn as I've always been very active and fit...20 yrs of yoga, Ashtanga until I was 57.

  • Last summer, like every other summer of my life since I was a little kd, I was swimming 5 miles in the Atlantic Ocean back and forth to a favorite spot up the beach for lunch. Now I can't walk across the sand.

    So yes, I know. Limitations are very frustrating. And while I'm good at many things, frustration is not one of them. How I long to be riding the waves again... dream about it every night...

  • Sounds like a wonderful childhood! I was riding horses in Andalusia last year, wondering why I was feeling so shaky. Sadly no more for a while...

  • See, I knew we'd become friends.

    Happy trails...

  • Hi Maria,

    So sorry to hear about your problems - I'm having exactly the same problems but my GP says she refuses to put me on steroids ... apparently, although the blood tests reveal some inflammation, t's not enough ... This, despite that fact that I, too, have a long history of falling over ... I wish I could offer some explanation or comfort to you but I can't. I guess I just wanted to let you know that you are not alone. So sorry you are going through this. You (and everyone else here) are in my thoughts and prayers.

  • Thank you, that's nice of you. I think I responded to another of your posts further up. I do hope you get the support you need.

  • Hi Maria

    I've been stumbling, clumsy, knocking things over and blamed the pred!

    As others have said PMR is not good for our muscles which would seem to become much less tolerant of any exercise.

    I've only recently started Tai Chi, which does seem to be good.

    I would like to ask about you "anti inflammatory" diet. What is it based on? What do you eat?

    I've been following a plant based whole food diet. Literally as it says, no processed foods, no meat fish or dairy. Not sure if thats anti inflammatory or not? But i I do feel that it is helping.

    As someone else put, good luck with your journey and please keep us posted.

    Chris

  • I've read that pred can cause muscle weakness. Tai Chi sounds wonderful and I'd like to try it. As for diet, I avoid nightshade plants, i.e. Tomatoes, peppers, aubergines and potatoes. I avoid red meat, not too many eggs, a little chicken. Eat lots of oily fish, green veg, sweet potatoes, pineapple, beetroot and pulses especially lentils. Also avoid gluten and dairy as they are both said to cause inflammation. I make tea with fresh turmeric, ginger and black pepper (the pepper helps better absorption) I make big jugs of it with some honey in and keep it in the fridge. It's quite delicious believe it or not. Tart cherry juice (the make is Biona) I find very good. No coffee (tough for an Italian!) and no sugar. There seems to be quite a lot of conflicting advice on diet especially regarding meat. Your diet sounds ok, I think the main thing is to avoid anything too processed.

  • Your falling over could well be beause your Ears are affected.

    Research is in progress and you can all help with that research by following this link.

    healthunlocked.com/pmrgcauk... to another part of this thread.

    I would not run the risk of complications by doing without pred.........currently there is no known cause or cure and pred is not a killer..................and to even contemplate the possibility that it could morph into its big sister GCA and run that risk.............

  • Hi. Has your doctor explored other possible reasons for your falling? Is he/she certain it's really PMR?

  • I've been tested for just about everything including cancer as initially my symptoms were pain, nausea and muscle weakness and as I had cancer 4 years ago we thought it had come back but luckily no. The nausea turned out to be due to a stomach ulcer. The doctor and Rheumatologist are as sure as you can be from my ESR (52) and my symptoms. I only have pain in my right shoulder (as well as my neck, rib cage and my hips to a lesser extent) so initially I didn't think it could be Polymyalgia but apparently it's not always bilateral contrary to what the literature says.

  • This is long but hopefully useful to you. Years before my PMR diagnosis I started falling down. A nudge in a crowd, a slight misstep, down I went. I could not recover my balance if thrown off even slightly. Some of my fall injuries were nasty, especially the time I fell off a ladder.

    After much testing I was diagnosed with an inner ear disorder. My right ear sends faulty messages about where my body is in space. No cure. I did several months of balance training exercises at a local facility. My doctor told me to wear shoes that laced and where my foot did not move around a lot inside the shoe. He said to avoid uneven surfaces and not to walk at night or in poorly lit areas because I really need the assistance of my eyes to compensate for the ear. I managed to avoid falls after that but I do walk like a drunk :)

    Fast forward a few years and I was diagnosed with PMR. It began with one sore shoulder and within six weeks I could not stand up without help or even move my arms enough to dress myself. I had to use a cane to hobble around. The pain kept me from sleeping. I'm also very anti-pill but I was housebound. I kept dropping things and my hands were very weak. Six hours after my first dose of pred I put the cane away and that night finally had a good night's sleep.

    After my first month on pred I noticed my hands felt better. They were stronger and I could open jars again and stopped dropping things. My balance got slightly better. I even dared some nightime walks.

    It's 18 months after my pmr diagnosis and I'm now on less than half my original starting dose of prednisone. At one point in the taper my hands got weak again and I once again drop things constantly. I also started falling down again in the same way I did when first diagnosed with my inner ear disorder.

    My rheum doc says I have primary osteoarthritis in both hands. It was mild when I was first diagnosed with PMR and the prednisone masked the issue until my dose got low. It responds ok for now to ibuprofen. I do miss having a grip and it's almost comical how often I drop things. I can pick up what I've dropped and drop it two more times.

    My ear/nose/throat doc says I need to start my balance training again. She said that prednisone is sometimes used for inner ear problems. Same as with the arthritis the steroids were likely masking/helping my issue.

    This is my long way of saying your falling down could be an inner ear issue. Dropping things could be something to do with osteoarthritis or from PMR inflammation affecting your muscles.

    Let us know if you find some answers!

  • Prednisone is a hormone the body is missing enough of , not a drug as a foreign chemical would be. A flare of PMR can be so severe you won't be able to walk. You are not there. Pain so bad you will not move and sadly why the grandmother mentioned above was given morphine until she died. Most doctors have no idea how severe the suffering is and therefore it is misunderstood by them and why so many are expressing alarm. I lean towards natural ways to cure but having been stricken by the major pain I too stand by Prednisone to halt the inflammation, a process that must be halted daily until it fades itself. Good luck and keep us posted.

  • Yes I'm very lucky I'm not there. At the moment I manage the pain quite well but it can be pretty bad especially if I've been still for a while. I honestly do find that turmeric tea and tart cherry juice makes a difference though if it gets worse I don't know. It's already been a year. Is there a time when it peaks do you think or is it just different for every person?

  • Hi Maria

    Re the falls, just to add my two-penneth, my mother had falls over a period of several years before going to the doctor. She was finally diagnosed after a week as a hospital inpatient, with peripheral neuropathy. She also had muscle wasting and her lower legs ended up looking like thin little sticks.

  • Yes I think peripheral neuropathy is when the immune system is attacking the nerve endings though I may be wrong. A friend of mine had it and he had numbness and pins and needles in his hands and feet and he was very unsteady. Pretty horrible. Your poor mum. I don't think it's what I have.

  • I respect your decision not to treat your PMR with prednisone. Wish I could do this same. My pain began in Oct. 2016 and was initially told by GP that I over used my muscles because I painted 2 very small bathrooms. I'm a very active person: I power walk and go to the gym. I finally couldn't take the pain anymore-I could barely get out of bed and rise from a chair. pain was horrendous!! Unfortunately I was misdiagnosed by a rheumatologist affiliated with the top hospital in the city even though I had an elevated sed rate and CRP. I wound up at the hospital twice before a rheumatologist finally diagnosed me. By this time my CRP was over 230. The rheumatologist tired tapering me off prednisone (started at 60 msg.) but it was too fast. I am now on 8mgs and in 1 1/2 weeks I'll be down to 7mgs. Since I had such a severe case, I had to also go on leflunomide. I have to say prednisone saved my life. I too hate taking medication!!! I wish you the best. Hope you don't mind my sharing my experience.

  • Gosh, sounds awful. Good luck with tapering off.

  • I'm not taking steroids and my pain is tolerable. I have never had my muscle weakness or wasting. Please go back to your physician. Something else may be going on. Take care

  • Interesting that you're not taking steroids. It's not a popular choice here as you can see if you read back through the thread. Can I ask, how are you finding it, and also how long have you had PMA?

  • I have PMR diagnosed one year ago during an acute epidode. Stopped prednisone 6 months ago,for a multitude of reasons. No regrets at this time. Still have pain but manageable with Advil as needed.Have not taken Advil in quite awhile. If I had GCA I would have no choice but to start again with the prednisone.

  • Steroids do not cure as you know. I have not as yet regretted my decision to stop steroids. But it seems

    that you may be battling a different animal. I have never fallen over or felt like I was going to.

  • It does seem to happen to some. My muscles are quite weak. I've had to stop swimming because of the cast but I think I may get some small weights to try and build my muscles up a bit. Somebody suggested it could be an ear problem due to the PMA affecting my balance which I'm going to get checked.

  • I tried to cope without steroids and had to give in. My pain got worse and my ESR went even higher. I would suggest trying it for a couple of months and see if you get any improvement with your falling over etc. It made an improvement to mine and I have no regrets now. Good luck with whatever you decide x

  • Thanks for your response but my question was about falling over as I've fallen and broken my ankle twice this summer and fallen other times and it seems to from some of the responses here that many people with PMA suffer from falls due to weak muscles. I may get my ears checked is apparently PMA can cause problems with ears and balance. I had already decided not to take preds in spite of the risks. The thread seemed to go slightly off at a tangent.

  • You could try using Nordic Walking Poles which may enable you to build your strength and balance safely. Your diet sounds good but be careful with the chicken, unless its organic, as it can come laden with hormones. Wishing you the best on a pred free journey.

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