So my usually fit, healthy and sprightly Grandma was recently diagnosed with PMR. She has always had trouble with her back/neck, but usually only lasting a week or so. I believe she is on Prednisone (She lives in the Channel Islands and I'm in UK so not 100% sure which drug exactly she is taking), but it doesn't seem to have much effect and she sounds really down/poorly and just not herself when I call. I'm quite worried as I feel her independence has been taken from her as she no longer drives and can barely walk round her house let alone to the shops or to friends/family's houses.
I've been researching alternative and natural remedies for her and have come across a few and just wanted some opinions on how others found these worked. Also if anyone has had other treatments and found them to be successful I'd be very interested as anything is worth a shot!
- Reducing sugar intake (she has already done this due to other minor medical issues, but Grandma's do always have cake )
- Supplementing Tumeric/Root Ginger (heard of ginger tea and milk with tumeric and ginger?)
- Acupuncture/Yoga exercises
- Lemon & Baking soda with water
- An electromagnetic machine of some kind?
PLEASE PLEASE PLEASE help if you can, I'm willing to try anything to give my Grandma her quality of life back
Thanks.
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LaurenStrang
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These are all things that may (or may not) help her to manage with a lower dose of pred but they will not replace the pred to deal with the inflammation altogether. She does need the pred to deal with that and the pred itself has side effects.
The majority of people I know who have tried acupuncture have found it didn't help. Yoga is likely to be next to impossible for your gran if she can't get in the car. I managed my PMR for 5 years without pred (not out of choice though) and I did aquaerobics after which I could manage Pilates and Iyengha yoga classes but both had to be adapted. And getting up off the floor was next to impossible on a bad day! I did find that Bowen therapy was useful - not for the PMR muscle pain and stiffness itself but for the add-ons that it sounds as if your gran may have suffered in the past with the "bad back/neck". A lot of people on the forums have found the same.
I suspect that if she isn't better than that she isn't being managed properly and the dose of pred probably isn't adequate but I know of others with PMR in the Channel islands who are very poorly managed by their GP with little recourse to a rheumatologist. She probably is also still in the early days? I have just had a flare and I must say I had forgotten how awful you can feel when the autoimmune cause of PMR is still fairly active - you feel as if you are in the middle of a dose of real flu (the sort that puts you in bed). It does tend to improve with time though.
Lemon and baking soda with water just sounds unpleasant and there is no way it can have a real effect. On the other hand, the turmeric and other antiinflammatory foods probably do help some - Celtic (definitely) and piglette (I think) on this forum are the diet experts. Oily fish several times a week is good, and there are other things - but omitting stuff beyond processed carbs really probably isn't worth it. I have tried leaving most of the usual suspects out and it has never made any difference whether it was nightshade veggies or alcohol. Just made my diet less interesting.
HeronNS on here has been using a low light therapy quite successfully so far - but it won't be available on the Islands. There is a device in London and another in the Midlands and that's it in the UK. I believe you can buy one but I suspect they really are megabucks.
By the way - this grandma doesn't have cake Well - maybe twice a year...
Guernsey - her GP is pretty rubbish (e.g. she had salmonella about 8 years ago and the doctor refused to give her anti-sickness tablets until after 3 weeks me and my mum went in and demanded it as she wasn't eating or drinking!) but its right across the road from her house so its the easiest surgery for her to get to at the moment! Unfortunately we are in a bad situation where my mum is the only one willing to spend time looking after her and my mum also works full-time so trying to organise doctor's appointments elsewhere is a nightmare (considering her 4 other children work either part-time or are retired!)
Thanks for your response, sometimes it feels like she's been diagnosed and there's nothing else we can do apart from pred. I guess we may just have to look really long term at seeing the effects of pred then maybe look to reduce it right down with some other treatments.
Unfortunately its a family trait we seem to have with back/neck problems, I can remember when we were little she would just bend down to put something in the oven and it would go then that would be it for a week. Her mum was the same, my mum and aunt are the same, I'm lucky to have got away with it so far. Will look further into Bowen therapy though anything is worth a shot really!
My aunt is a reflexologist and is well into her yoga but as you say if she can't move already yoga is near enough impossible! Perhaps we will give that a shot if pred seems to take effect!
I've had a quick google and there are Bowen therapists on Guernsey, I find that the PMR makes for my weak points - shoulders and neck and sacroiliac joints . Even if the Bowen doesn't help the PMR a great deal I do also find it is as good as a massage for relaxation and there is a real feeling of uplift during and after the session. It is very gentle - it would be a nice pressie for your gran if nothing else.
I do hope she feels better soon - funny isn't it, the family members with time often don't have the will.
Lauren, if you can find out more about your Gran's starting date/dose of Prednisone/Prednisolone, we may be able to help further. Also did she have blood tests to check for inflammation (ESR and CRP)? If she did and they showed raised markers, then those tests should be repeated to see if there is any improvement before any reduction in steroid dose. However, about 1 in 5 people never have raised markers but can still have Polymyalgia. If the diagnosis is correct, then the right dose of Pred should result in about 70% relief of pain in just a few days, or even within hours for some lucky people. Most people are prescribed a starting dose of 15mgs, occasionally 20mg if overweight. If that is the dose she has been prescribed but isn't responding, then her diagnosis should be queried. Late onset Rheumatoid Arthritis is another possibility - this can also fail to show up in the relevant blood tests.
She should also be tested for Vit B12 - I have heard of someone who was believed to have Polymyalgia but failed to respond to steroids and only recovered after the Vit B12 deficiency was discovered and treated.
If your Gran hasn't been given a Vit D blood test, then she should ask for one as any deficiency can lead to pain in similar areas to those of PMR. Any deficiency is usually treated with a 3-month high dose course of Vit D3 (Colecalciferol).
I am a great believer in anti-inflammatory foods for conditions such as our's, including several helpings of oily fish a week, beetroot, avocado, garlic and turmeric - not a cure (sadly nothing is at present) but once into this sort of diet, it is possible to feel a difference, especially in the stiffness, as soon as the diet is discontinued. Foods to avoid are processed meats, sugar and refined carbs.
We really feel for your Grandma - how lucky she is though to have such a considerate and helpful granddaughter.
Thank you SO much! All this info is really, really helpful, will pass all this onto my family back home & hope she finds something that starts to work! I will ask my mum if she knows when she started her medication and the exact name of it and get back to you.
I think I am worried as this has all happened so quickly and it seems nothing is making it better, but hopefully we can set some long-term goals and see some improvement over the coming months.
Hello Lauren, I started a post a few days ago and several people have responded with their own experiences with other methods than the low intensity light therapy which I am lucky enough to have available to me. Post is called "progress report from alternative treatment front" and one of the respondents, Queenfisher, said she has been using a machine that uses electromagnetism to promote healing. It appears that these are sometimes even available in doctors' offices. It is a PEMF machine. There's quite a lot of info on the internet about this and the related iMRS machine. Also you can google bioflex laser therapy to get information about the light therapy. There is a home unit available (expensive) but I can't imagine being able to use it on myself or on anyone else without training.,
One of the helpful things I've found is to alternate some appropriate exercise (whatever one is capable of doing - I walk a lot for example) with rest periods. Good to limit to one activity a day: for example a visit with a friend OR a shopping trip OR cleaning out a cupboard, as well as the period of appropriate exercise, and then not much else for that day. When the inflammation is at its worst it's important to allow the body to rest, but equally important to maintain as much flexibility and muscle tone as possible.
Definitely she needs to be on an effective dose of prednisone to get the inflammation under control or I doubt that any alternative methods will help much. By the way, I've read that if turmeric (curcumin) is taken with a little black pepper (piperine) it has a remarkable effect on making the anti-inflammatory properties of turmeric more bioavailable.
I wish I had had someone near me who took as much interest and care when I was suffering last year. You are your grandmother's angel!
Feels so nice to have people who understand and are willing to try other methods to find effective relief! Thank you so much for all this info, I have some serious googling to do tomorrow
Its a horrible condition, back/neck or general joint pain is bad enough but to have it constantly and chronically is awful. Hearing my Grandma say "I'll just have to learn to live with it" (typical attitude of the older generations to just get on with it!) just isn't going to happen in my eyes
Required reading for PMR patients and their nearest and dearest: Kate Gilbert's book: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. It's available from Amazon either for Kindle or as a paperback. It really is a life saver!
Not enough info. to provide effective response... how is PMR being monitored...Cinical hx? SED RATE? How much PRED?..NEEDS SUPPLEMENTS..?MAG. CITRATE(VERY IMPT.), B COMPLEX,, CALCIUM ,ZINC CARNOSINE,VIt; C,E &D,etc.Getting off prednisone can be tough after 7.5 mg/day... has to be done slowly. .5mg/wk..... some Adaptogens might help.... I assume 5O % of all 80 plus pts are Magnesium DEFICIENT...easy to correct... may improve sx.
I have found several things have helped me. First though it is essential to get on the right dose of pred. to be on a firm foundation. So in addition to that I have seen improvement by following an anti- inflammatory diet, taking concentrated turmeric, and cutting out alcohol and nightshades. I also take magnesium supplements. I find if I " fall off the wagon" with any of these things I pay the price!
A couple of weeks ago I also started using a PEMF machine which promotes blood flow and enhances microcirculation. I have found this to be very helpful to relieve the pain in my muscles if I do to much and my muscles start to cramp up.
Absolutely. I am a fairly new user of this technology, so am still finding my way to a degree. I am taking it really slowly and using just the lowest settings on the machine at present as I know my body needs to get used to it first. Thus far, I use the full body mat twice a day to boost my energy level. Even at these low settings, I can now go the whole day without my energy suddenly crashing on me and needing to lay down and rest. This in itself is a huge benefit. I also find my brain has got back on track and I can think clearly and plan and work again! I also successfully use the smaller attachment for targeted pain relief if for example my shoulders are aching.
I am impatient and wish I could go faster and use it for a really huge energy boost, but that would be foolish for me try at this point.!
I posted some more specific information about all this on a post from 3 days ago "Progress report from Alternative treatment front" from HeronNS.
I was diagnosed with PMR before xmas. It started with fever and severe pain in shoulders and knees which spread to hands and jaw. Dr insisted on steroids which I refused and changed my doctor. My friend who has fibromyalgia gave me magnesium to try and another friend with arthritis gave me some turmeric capsules and within a week my pain was less than half. I then did research and have since taken supplements to improve my immune system (zinc) to improve heart health and vitamins A,B,C and D. I make sure to have a smoothy made from raw fruit (berries, banana apple etc) and veges (spinach etc) plus burdock root capsules and pomegranate. I believe it is the turmeric and magnesium that are doing the most good however and proper sleep (assisted by magnesium) is also critical for me
I avoid processed food but I still eat dairy and meat and I make home brewed beer (not kit brew) which seem to have caused no ill affects. The other thing I do is the basic chi gong movements (10 mins per day) and it has strengthened my knees and shoulders. I am now able to walk up and down steep hills, and I am trying to be as active as possible. It has been an up hill battle but well worth it. I still have twinges occasionally but usually if I'm tired or stressed out. I got most of my information from the internet and tried to use my instincts to see what was right for me as I'm sure there are triggers for PMR. All the best for your grandma. the above is worth a try
I've found CBD helps mask the pain but is not a cure for PMR. I also take prednisone. Surprised the drs haven't prescribed it for her. Will not heal, but will masks the pain, and what creeps through will be covered by the CBD drops. Hope this helps
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Well - maybe twice a year...
Update: Myofascial Pain Syndrome
Turmeric with Black Pepper
Now Able to Take My Advice!!!
Would love your expert advice
Can PMR disappear overnight?
