Posted , 38 users are following.
Is there any one out there who is using completely alternative therapies and not taking steroids. Would love to hear from you.I am finding it really hard to find out what others are trying as all seem to be on steroids.I am 57 and have had PMR for a year now and have been working with various alternative people.just wondered if any one had found a quick fix
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BettyE
Posted
Hope your warmer weather has arrived. It's lovely here now, no heating on, doors and windows open
No wonder no-one can come up with a cure for PMR. You might think to read through these posts that there are individual versions of it for everyone. You cannot sleep after a hectic day; I become sleepless and agitated if I HAVEN'T had an active day. Slept for seven hours last night with just one waking up at 4.0AM and I think that was a thrush singing that did it. Lovely. Sleep and thrush. This was after a day when we went shopping AM. worked in the garden PM and in between walked our neighbours' dogs three times as they were away. Fed them at 6.00PM and heaved a sigh and sat down ready for a drink before supper when along came one of our favourite people who, as the table was not laid, had no clue we were hoping for supper. Stayed for two entertaining hours. Supper eaten and cleared by 9.00PM!
I can't keep that pace up on a regular basis, unfortunately, though I would if I could No wonder I don't suffer the weight gain effect of Pred. I read all the advice about pacing ourselves and resting and not overdoing things and wonder sometimes if my system works in reverse.
I intend to try and get an opinion on this when I see the Rheumatologist for the first time in June. Will let you know. best wishes to all. Betty
98sidney
Posted
She is in so much pain and its horrible to see her like this. she was taking devils claw and ths helped her, but is not aloweed to take them anymore if she wishes to go onto steriods..
Is there anything I can buy or do that will help her until she is able to start steriods?.
EileenH
Posted
Sorry to hear your mother is in so much pain and has joined this club which we'd really prefer didn't get any more members.
Unfortunately one of the side-effects of taking steroids can be an increase in blood pressure which is why she needs the hypertension sorted first, as I'm sure you will have been told. It is due to the fluid retention which some people suffer. Having said that - my blood pressure was high at the time I was diagnosed which coincided with a particularly bad flare of the PMR symptoms which I had had for a few years without it being diagnosed and one of the problems I have with the PMR is swelling with fluid retention! Since the PMR has been treated both the fluid retention and the high blood pressure have gone!
And, equally unfortunately, there is little out there which helps with PMR except the steroids. If you look through this forum you will find some posts about ways in which we try to cope with the pain and stiffness and I'll try to outline a few of the more common things for you. What we can tell you quite definitely is: If you see any websites which claim to have miracle cures - they are not true, they just want your money! Don't fall for them.
The first and foremost way of dealing with PMR is not to fight it. If your mum doesn't feel able to do it - tell her to say NO! You have to learn to live with the restrictions and accept them - and that will probably help the BP too a bit. If you overdo it when you feel a bit better you will almost certainly suffer for it the next day. MrsO (on this forum) had several months where she was bed-bound before she was diagnosed and will probably post with some advice from her personal experience. Without knowing a bit more about how exactly your mother is suffering and her living conditions (and how old she is) it's difficult to be specific but, here goes:
Tell your doctor (be firm, don't be fobbed off) your mother needs to see someone from the occupational therapists (OTs) who should be able to provide home aids to make life less of a struggle (a raised seat for the toilet, for example) and that will help with the pain too. A high-seated arm chair will make getting up out of her seat easier and so will grab rails where necessary. Try to arrange things so she doesn't have to struggle getting up and down stairs too much. The OTs should provide all sorts of advice too. There are silly things like a small kettle so it's not heavy to lift, a kettle and mug upstairs so she hasn't to go downstairs for a cup of tea first thing - all these sort of things mount up and make a big difference. There are things to help with getting dressed, picking things up off the floor etc. They may even be able to loan a wheelchair if she finds walking too difficult. The big supermarkets all have chairs, if she asks someone will go round with her and help her with her shopping by reaching things off the shelves for her. No carrying heavy bags by the way!
Some people find heat helps - I suggested to someone who found it very difficult to get out of bed that they got an electric overblanket and put it on shortly before they got up so they were nice and warm before moving and they found it a great help. Your mum probably gets night sweats so she won't want it on all night, just to warm the muscles up. A warm shower helps too - but a bath is difficult as some people find it almost impossible to get back out again!! No fun being stuck in the nude! Most people find that once you can get moving a bit the pain and stiffness reduce so anything that helps her start moving will be good. And since the stiffness returns if you sit in one position too long encourage her to get up and move around a bit fairly often to reduce that stiffness.
Even before I was diagnosed, I found aqua aerobics helped me get moving - enough to do Pilates and yoga in fact. The steam room at the gym was brilliant. I saw a Bowen practitioner and that helped with some of the back and hip pain - I
RickF
Posted
She is in so much pain and its horrible to see her like this. She was taking devils claw and this helped her, but is not allowed to take them anymore if she wishes to go onto steroids.
Is there anything I can buy or do that will help her until she is able to start steroids?."
So sorry to hear about your Mom. Her BP being too high to start steroid treatment almost sounds like 'Catch-22'. When a person is in pain or not feeling well, it's normal for the BP to be elevated. When I went to the Dr. (Rheumatologist), I was in so much pain that my BP was 156/92! After a couple of days on Prednisone, my BP was back down to nomal (125/77) as the pain lessened a lot with treatment. Of course if her BP is too high, they need to treat her for that first.
Eileen suggested a few things that I hope will help your Mom some until she can start steroid treatment.
Good luck.
EileenH
Posted
I found your post really interesting - I nearly mentioned something similar but felt it was maybe too much speculation. I had wondered if raised BP is sometimes a part of PMR - as I had an almost identical experience - and not just because of our response to pain. Seems a shame if that were so that in a case like this you would have to wait for steroid treatment, although of course as you say (and which was my assumption) if the BP is really high then that must be dealt with first. But if the hypertension is secondary to the pain/PMR is that a different scenario to it being a primary HT? Will antihypertensives have the same effect? Must brush up on the pharmacology there!!!! Chicken/egg syndrome here maybe? :?
I'd been in hospital for a transient global amnesia just before the PMR got really bad and my BP was high at admission and was also high at the 6-week follow-up appointment. Hasn't been checked anywhere else but it was recently 125/85 which is pretty acceptable at 57 and on steroids I think!
Time for some reading I think!
cheers,
EileenH
MrsO-UK_Surrey
Posted
As Eileen has mentioned, I suffered from undiagnosed PMR for a year and was totally immobile for 3 months during that time. I depended on Ibuprofen and Paracetamol just to allow me to get from the bed to the loo! I was unable to sit and had to just stand over the loo until Social Services arrived with a raised toilet seat - bliss!!! So do make Social Services your first port of call to obtain any helpful fittings or gadgets. If your Mum does take Ibuprofen then make it the smallest dose that gives relief. I was also prescribed Tramadol but that had a very nasty effect on me after only one tablet but then not everyone would necessarily have that reaction.
I tried a TENS machine which some people find very successful but it didn't really help me, whereas an electric pad proved very comforting for my shoulder pain and brought me some pain relief. I believe the make was 'Dreamland' and it is available at Argos.
A fresh veg and fruit diet is essential and I recommend as much organic food as possible to reduce the amount of toxins in the body, although I appreciate that the higher prices of organic food may mean this is not an option for some. Your Mum may benefit from eating as many anti-inflammatory foods as she can. I have found regular helpings of oily fish such as sardines, mackerel, salmon, trout particularly beneficial in relieving my pain. I also add the spice Turmeric to casseroles, risotto, shepherd's pie, etc as it is known to be highly anti-inflammatory.Avocado, strawberries and raspberries are also helpful. However, too much red meat and all processed meats are inadvisable and I have found that whenever I increase my sugar intake - for instance at Christmas - I seem to become more uncomfortable.
I'm sure that your Mum's pain and the tension and stress it is causing is exacerbating the high blood pressure so I do hope it can be successfully reduced very quickly and the steroids commenced to make her feel better and you less worried. Do let us know how she gets on. My very best wishes to both of you.
MrsO
donotwanttoseet
Posted
EileenH
Posted
I know several holistic practitioners who all say they have nothing to offer - and some of them have PMR! Some of those "naturopathic" treatments you mention are not without risks themselves.
However - anyone may try these options - if they can afford them! Most of us couldn't. I also doubt this site would recommend them either!
donotwanttoseet
Posted
EileenH
Posted
Please don't believe that naturopathic and other so-called natural remedies are necessarily safer than pred. They are non-regulated and substances you purchase on the internet are not quality controlled and frequently lie about the ingredients. Some are illegal because they are downright dangerous.
Pred, on the other hand, whilst not exactly sweeties, has been in use for over 60 years. We know more about its effects and side-effects than many other substances and used carefully saves not just people's sight but even lives.
donotwanttoseet kiwi_from_down_under
Posted
MrsO-UK_Surrey donotwanttoseet
Posted
Although it's great to hear that your husband's PMR symptoms seem to be improving due to "naturapathic treatments" as opposed to steroids, just a word of warning here following my experience.
I remained undiagnosed, and therefore untreated, and bedbound for many months with what we now know was PMR. I recovered spontaneously within just under a year, with raised blood tests returning to normal. BUT then I was suddenly hit with a whole set of different symptoms, plus the previous ones, and was eventually diagnosed with GCA.....and returning PMR. The most likely reason: because my original bout of PMR had remained undiagnosed and untreated, the linked condition GCA arrived 'through the back door'. I then learned that whereas sufferers with PMR and on steroids have around a 3 in 10 risk of developing GCA, that risk rises to around 7 in 10 for those left untreated.
I wish your husband well but he should remain alert to any head/jaw pain on chewing or any sudden problems with his vision, in the event of which only immediate treatment with Prednisolone will protect him from possible loss of eyesight.
donotwanttoseet MrsO-UK_Surrey
Posted
patricia31001 kiwi_from_down_under
Posted
fran12828 kiwi_from_down_under
Posted
i have been to a naturopath who has prescribed large doses of magnesium (muscle relaxant) and B5 Pantothenic acid (maintains healthy nervous system), also affirmations to help rid the brain of stress and negativity and lots of rest in these early stages. Every 3-4 days the pain gets so intense that I resort to taking some diclofenac. I have also resorted to eating a paleo diet of eating eggs, fish, meat, veggies, fruit and certain nuts.
I am reading an excellent book called "It Starts With Food" by Dallas & Melissa Hartwig. This book is excellent for explaining the benefits of food and how it effects our bodies. We are what we eat!!! And how eating the right foods can heal us. I highly recommend reading this.
i have also started going to an acupuncturist who works on balancing the body and massage of the muscles. Surely this has to be of some benefit.
As I said I have only had this one month and still waiting for some improvement. My body has obviously been in the decline stages for quite sometime so I do accept there is not going to be a quick fix but I am doing and going to do everything that I possibly can do to correct my body functions through healthy living.
i would be very interested to hear how you have managed over the past year. If you have managed to recover, which I sincerely hope so, and how you have managed to do so.
Des1960 fran12828
Posted
I am a 54 year old male and got hit with PMR 4 months ago so am no expert. Having said that I have read an awful lot about the condition since that time.I have looked at both the medical establishment point of view and from the many personal testimonies on this site and a few others here in the UK.
Like you, I was stunned as to how this has happened to me. But unlike you I can not find any reason or possible cause. I do not drink alcohol, or coffee for that matter. Never been a smoker, and whilst I do like a bit of red meat, I don't think I over-indulge in this department, as I do like chicken and occasionally fish. I eat a great deal of veg and salad, the majority grown by myself - keen on organic gardening.
My life over the past few years has been a little stressful at times - but then whose life is stress-free? On the whole I would say it has been acceptably stressed....if there is such a thing.
I have always loved excercise and have a history of playing many sports and over the last 10 years have taken to triathlon. A typical week pre-PMR would have me running 4-6 miles 3-4 times a week and cycling approimately 20miles twice a week. Not many weeks would go by without excersing a minimum 4 times unless injured. Plus the gardening kept me busy for a few hours a week as well.
Within 4 weeks of first noticing a slight pain in one of my hips whilst running, the condition deteriorated very quickly and soon became totally unbearable. I love the pain from excercise especially when it's a result of a good dose over-exertion. But this was another level altogether!
The few days before Pred were virtually unberable. I could not dress myself, roll over in bed, get out of bed, lift my legs or arms, or many other simple processes. I started on a low dose - 7.5mg and got partial but virtually instant relief. However if I was anything but totally sedentary (impossible!!), I experienced high/extreme levels of pain for a day or two after. Over the next couple of weeks I worked out the mimimum level of Pred that I needed to be able to live a life which allowed for a little light gardening and other every day chores. This turned out to be 15mg, and whilst I am not pain-free and still have payback if a do a little too much in the garden, I at least have a life.
I am gutted that I am on steroids, and seemingly will be for a long time. I have never had to take medication for any lenght of time, can not remeber when I last had an antibiotic, and have generally been very healthy. Then BOOOM! out the blue I am brought to my knees with all my preconceptions and previously held opions challenged.
I could not cope pre-Pred, hate taking it, and look forward to the long process of reducing it and hopefully being free of it but more importantly of this condtion. I guess it affects different people in different ways, and I hope you have an easier ride than I have had thus far.
I think other treatments are all possibly worth trying if your condition permits. For me, (and as I said before, I quite like pain in a sado-masochistic kind of way), there really was no alternative to Pred.
Good Luck and all the best.
Des
mrs_k Des1960
Posted
I am entering this discussion just to say that there are currently as many theories as to the cause of PMR & GCA as there are grains of sand.
There is an Interntional Survey which can be googled and you can particpate and read the ongoing results.
Yes both PMR & GCA can and do go into remission, yes, remission as currently there is no cure. If you ask any patient with PMR, how long for remission, they will say to you "how long is a piece of string?. One thing is that most men, not all, PMR seems to fit the 2-3 years guidelines.
Great efforts are being made in many countries looking for cause and cure. Not by big Phara (no money in it for them) but pure research.
There are four websites available just google PMR & GCA, you will find them of great interest. One is located in North East England, one in North West, on in Scotland and a National one. It is worth reading them all. These sites are run by support groups (ie patients) and as knowledge is power the more you read the more you learn.
To those of you with PMR, please remember if GCA comes along and is not treated timeously, then if you suffer partial or total loss of sight, once its gone, it is gone.
EileenH Des1960
Posted
I don't like pred either - but it has given me back my life. Used properly it is good despite its downsides and reduced properly many of us believe the journey can be shorter. The trick seems to be very very small steps - preferably spreading a 1mg drop over a few weeks. It is working well for a lot of patients we know - and rheumies are getting interested.
Des1960 EileenH
Posted
Does anyone have any advice as to the timescale of starting the pred reduction programme?
In case you have not read my previous post, once diagnosed, I started the pred regimen from a low dose (5 mg for a day or two, then 7.5mg for 4-5days) increasing by 2.5mg untill I found the minimum dose that allowed me to cope.
I felt more confortable this way as I was determined not to take any more medication than was neccessary. 15mg turned out to be the number which got me too my 'acceptable' level of pain and discomfort. I have been taking 15mg for about a month now.
This dose allows me to garden, and even play a little golf. I do have some bad days, especially if I get a little exuberant with these activities. However, my current status can best be described as having uncomfortably stiff (post heavy work-out) hip and shoulder muscles, with bouts of more serious pain - like a torn muscle. Certain movements are still prohibitively painful.
Do I continue popping 15mg for the foreseeable? And if so, am I likely to start experiencing lower levels of discomfort on the same dose? To what level do the symptons need to reduce to before it is time to start the reduction program? Or do I just give it a go and hope for the best? Perhaps I'm been a little premature and unrealistic, but is there any harm in starting the slow process of reduction as soon as one can?
Some of you, I'm sure, have had experience of the wrong way of doing things. Is it too early for me to be thinking reduction? What are the consequences, if any, of a little impatience? Any advice on this would be useful.
mrs_k Des1960
Posted
Most people start conventionally, ie 15-20mg and then reduce very slowly. ie current thinking is no more than 10% at a time.
A' post heavy workout' rings alarms bells.
Des, did you look at any of the websites I recommended? If not please do so and on when of them there is another forum which you could go to and in the index listed is Eileen. Read up on that and you will learn one heck of a lot about PMR in Laymans Language. If you want further details send me a PM.
MrsO-UK_Surrey Des1960
Posted
Whilst the steroids are trying to get control over the inflammation, it is advisable to give ourselves lots of TLC rather than "heavy work-outs" - such heavy exercise will undo all the good in these early days and just take you back to square one.
However, we do often find that some men are able to continue with more exercise than women - whether that is down to muscle size or hormones is not known, but men can often seem to have an easier ride. Having said that there is one male member in my support group who has been on steroids for PMR for ten years!
As to your question whether it is "too early to be thinking of a reduction", after a month on 15mg it would usually be possible to manage a reduction BUT only for those who are prepared to help themselves by not going overboard with the exercise! I'm so sorry if this sounds harsh, but we have all learnt the hard way and in offering support to new sufferers from our experiences we hope to help them avoid the pitfalls.
Des1960 mrs_k
Posted
Des1960 MrsO-UK_Surrey
Posted
You may have mis-understood me with regard to excercise. I am in no way able to undertake any sustained exertion like running cycling swimming etc. I used the "post heavy work out" phrase as a analogy for the pain symptons I feel in my shoulder and hip areas on a daily basis. On most days it is at an entirely manageable and acceptable level for me......historically I have rather enjoyed this form of discomfort (when it has been the result of an occasional hard work out).
It is not however, something that is pleasureable to experience on a daily basis. Furthermore, if I do a [u]little extra[/u] activity in the garden or elsewhere, the pain level rises somewhat to what you would liken to pulled or torn muscles in those joints. These levels drop back to the acceptable level usually within a day or so.
An example:
A couple of days ago I prepared one of the veg beds for planting. This entailed moving about 7-8 wheelbarrows of soil and compost into the bed, gently turning it over and raking it smooth....not even worth mentioning in the grand scheme of things a few months ago. Yesterday I actually did nothing and felt ok. Today however, I am in a good deal of pain. Getting up from the couch, bending to pick something up off the floor, lifting my arms above my head are all painfull processes. It feels as if not only have I had a heavy work out, but have been kicked around by Mike Tyson as well!
Can todays pain have anything to do with my activities of a couple of days ago? Shouldn't these 'paybacks' occur on the day after the exertion or is it normal for this to take a couple of days. What are your experience s in this regard? Perhaps the pain I am in today has nothing to do with a couple of days ago. In which I case I'm mystified as to what may have brought it on.
More importantly I guess, is it all that bad to have this constant reminder of the condition? Does it do any harm per se? Does one simply accept it as part of life for now and get on with it as best as one can? Or should I be aiming to be relatively pain-free before thinking about reducing the dose?
EileenH Des1960
Posted
But for goodness sake - you have a chronic soft-tissue rheumatism that makes your muscles and ligaments etc unable to tolerate exercise because they cannot repair themselves as normal. Yes, most of us have experience of "doing it the wrong way" - and believe me, having a heavy workout is the wrong way! Just because you can do it with 15mg pred doesn't mean you should - you need to learn to pace yourself and no overdo it. Then you stand a chance of a good recovery. It is being rrealised that moderate and appropriate exercise WILL help your recovery but the emphasis is on appropriate. Aqua aerobics at your level - ie one that does not lead to days of muscle pain - and walking regular short distances is good. Much more is probably bad.
Haven't time just now for more, but you have been pointed in several directions. Go and read the stuff.
MrsO-UK_Surrey Des1960
Posted
"This dose allows me to garden, and even play a little golf. I do have some bad days, especially if I get a little exuberant with these activities."
There, you've said it yourself! "Shovelling 7-8 wheelbarrows of soil" is "a heavy workout" as far as PMR is concerned, and if 15mg was battling to get initial control of your inflammation, then the exercise has let the inflammation win. The steroids are not curing PMR, they are just trying to control the inflammation that causes the symptoms until PMR itself goes into remission and that can take a couple of years at least. But you have to help yourself. I started by gentle walking, gradually building the speed and length, Tai Chi, and finally Nordic Walking where walking with poles helped to restore my balance (I had spent months in bed before diagnosis).
Certainly, you should not attempt a reduction if you are still in such pain, and if you had raised inflammatory markers at the outset then the ESR and CRP blood tests should be repeated before any reduction.
When you do reduce, you MUST take it very easy for a week or so to allow your body to adjust to the new dose. Learning to pace ourselves with this condition is probably one of the hardest lessons we will learn.
mrs_k Des1960
Posted
Now I am not going to type it in properly, as it will then vanish to be moderated so here goes - you fill in the missing bits.
pmrandgca forumup .co uk
The website can be found on the 'pinned' bits on this site. Good exercise done by a person who knew about PMR and is an instructor.
EileenH Des1960
Posted
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find further links (to the sites MrsK recommended), one is to the "forumup" forum which is where you will find that stuff. I can't give you a direct link here - it will disappear for a while.
mrs_k Des1960
Posted
pmrandgca.forumup.co.uk
run by PMR&GCAUK North East Support but still keep on coming back to this one.
Des1960 EileenH
Posted
Des1960 mrs_k
Posted