PMR caused by stress and physical trauma?

MsK

Yes, like you, I feel that a fall triggered my PMR some 3 years ago which appeared initially to aggravate an old slipped vertebrae problem at the base of my spine and rendered me completely immobile and bedbound for 3 months In spite of attending hospital appointments by amubulance and wheelchair, the rheumatologist couldn't diagnose my condition. However, a year later PMR was diagnosed when almost over it and getting really ill again with what was then diagnosed with GCA (Temporal Arteritis) and I was started on 40mg of Prednisolone. Apparently there is a higher risk of contracting this linked condition if you have not been treated with steroids for the initial PMR. I've just reduced to 4mgs from 5+ months on 5mgs, after being up and down on the dose a couple of times.

That's wonderful that only a 10mg starting dose of Prednisolone has helped you so much. I also tried recently to return to aquarobics, managing to get up and down into the pool but found just moving about in the water aggravated my knees for the next couple of days - just putting up with the pain would by possible but at the same time there is the possibility that the exercise would trigger the rise in the ESR and CRP which has happened previously thereby having to increase the steroids, so I have to be very careful. It's so difficult finding that dividing fine line but I find that as long as I walk for half an hour every day that at the moment seems to be beneficial.

I'm really interested in your anti-inflammatory diet - I try to eat some anti-inflammatory foods each day, ie beetroot, pineapple. But I would really appreciate you letting me know the foods that you eat which you consider to be helpful.

It was really interesting reading your entry, and I wish you the best of luck with continued improvement.

MrsO

Hi MrsO,

I do experience some stiffness the day following my exercise, but I think it's well worth it as it helps keep my muscles alive and stops me gaining more weight. I find a single dose of paracetamol relieves this pain.

You mention your ESR / CRP went up after exercise. Are you sure this was related? Can you please elaborate so that I can watch out for it.

I found the anti-inflammatory food / diet info from a website.

It's very easy to follow but you have to remember to drink plenty of water. I personally suggest to have at least 3 - 4 mugs of green tea a day and no caffeine. :cry: If you must, I would suggest using soya milk with your tea or coffee.

Most of my meals consist mainly of the following:

[list:925282021c]

Broccoli

Brussel sprout

Asparagus

Green beans[/list:u:925282021c]

And either chicken or fish as my protein intake, with plenty of green salad, but NO tomatoes. For both cooking and dressing I only use extra virgin olive oil.

For breakfast I usually have a banana, two walnuts and a teaspoon of Manuka 10+ honey.

I avoid all starchy carbohydrate foods such as bread, pasta and potato as well as sugars in general, except for some pure fruit juice, including apple and orange.

I would also recommend keeping some mixed nuts handy in case you feel peckish, although you're not allowed to have more than a handful a day.

I hope you find this information useful.

** Web links included in this message have been deleted. We apologise for any inconvenience but it is the policy of PUK to disallow all links to other websites.

MsK

Thank you so much for all the information you have provided in answer to my query. I see that the Moderators have removed the webpage you recommended but, in fact, I have an almost identical diet to you with the exception of tomatoes which I add to my daily salad but I will try doing without for a while. I do have some potatoes though but, like you, I also have daily Manuka Honey UMF 10+. However, I do not have oranges or the juice as I feel these are too acidic. I do have daily lemon juice squeezed into warm water first thing in the morning as I understand although acidic it turns to alkaline in the body. I have muesli and fresh fruit for breakfast with organic live natural yoghur in the hope that this will give me stomach protection from the steroids as I am unable to take the stomach lining tablets usually prescribed alongside the steroids.

To answer your query re my increasing ESR and CRP markers some months ago, this followed a long walk in Virginia Water at Easter. We had planned a route from the car park to Saville Garden which turned out to be about 45 minutes......in the last 10 minutes or so I had great difficulty continuing due to increased pain in my hips. After a rest, we had to do the walk back which I found a struggle. On my next appointment shortly afterwards, both ESR and CRP had increased dramatically and the Rheumatologist confirmed that the walking would have contributed to the rise and increased pain, but I am at present managing to walk at least half an hour daily and once a week manage an hour. I did have massively raised markers at the outset of undiagnosed PMR 3 years ago to the extent that the Registrar wanted to admit me for further investigation but I preferred to just attend outpatients and stay at home where I was very luckily being wonderfully looked after by my husband. In the last couple of months I have also taken up Tai Chi (or Chi Kung which is a simpler form). It is very simple movement, stretching, relaxation and breathing techniques which I am finding enjoyable.

This site has been a wonderful comfort to me over the last few years and especially the group of PMR Fighters mentioned. I have also been in telephone contact with a lady who runs a PMR Group in Suffolk who is very knowledgeable and who herself has recently recovered and come off the steroids after 5 years so that gives tremendous encouragement.

All best wishes to you.

MrsO

Hello MsK and MrsO

Stress and physical trauma do seem to often be the trigger for PMR although this has never been proven.

I am very interested in your discussion as I to have very recently changed diet and would be very grateful if you could keep posting on how you are getting on. I also feel I should declare an interest in that I am one of the pmrfighters and would like to thank you for the kind comments.

Before I started I did a bit of research and found so much information was contradictory so it is very hard as know that you are indeed doing the right thing. Would you like to comment on the following:-

I agree that the idea of the stomach protection with yogourt before the steroids sounds good.

Females post menopause need bone protection, especially if taking steroids, so calcium rich foods should be considered.

Have you thought of rapeseed oil as well as extra virgin olive oil.

Seeds can be a great source of natural nutrients.

When choosing fruit and veg I understand it is best as a rule of thumb to select different colours to provide a greater variety of nutrition.

Have you considered sweet potatoes and red onions and turmeric.

Look forward to hearing your comments.

Hello Morwe

Yes, I feel very strongly that stress and physical trauma do figure highly in PMR/GCA. I have read in the past that although it is not known what triggers these conditions, it has been traced back in some people to being post-operative and I know of 2 people who have had this experience. As you will have read, in my own case and that of MsK we feel that the trigger was a fall. I feel that possibly at the end of the day, it could be proven that there are possibly numerous triggers.......for instance, also in my case, GCA was triggered immediately following a switch in BP medication because undiagnosed PMR (although just in remission after a year on Ibuprofen and Paracetamol) was lurking in my body and hence GCA.

Meanwhile, I will do anything possible regarding my diet in the hope that this will help to burn out these illnesses. I buy a lot of organic food in the hope that the less chemicals going into my body the better although I appreciate that this costs more money. Since on steroids in the last 20 months, I have gained between 2 and 5lbs (I yo-yo depending on how much I have been able to resist the desserts when I eat out!!).

To answer your queries:

Live organic fat-free natural Yoghurt over the last 20 months seems to be doing the trick as far as I can tell. Half a pot in the morning with muesli and half in the evening over stewed apple (eating apples with no sugar added, just lemon juice).

I haven't been prescribed bone protection medication, so I have a calcium rich diet (the yoghurt, milk and cheese) plus oily fish such as sardines, mackerel, salmon, at least 3 times a week.

Haven't tried Rapeseed Oil but do stick to Extra Virgin Oil.

Do have seeds with the muesli, plus almonds, walnuts, brazils in moderation.

Yes to various coloured fruit and veg - daily broccoli, sweet potatoes, carrots, spinach, butternut squash (always steamed to preserve the nutrients). Big bowl of strawberries, raspberries and blueberries made on Sunday makes healthy puddings for a few days - my husband has creme fraiche on top but I have the yoghurt. Strawberries are very anti-inflammatory. However, I gather that mango and banana are inflammatory foods, so only one banana a week for me!

As regards, sweet potatoes, red onions and turmeric - YES, YES, YES, daily if possible.

Well, I hope you find this useful and that one day we can all get togther and say we are completely free of these horrible conditions.........and that maybe it wasn't just down to the steroids!

Best wishes,

MrsO

Hello to all.

Really interesting reading.

I was diagnosed with Fibromyalgia in June this year - but have just found out that I was also diagnosed with PMR too. Nobody had informed me of this and I have not been started on any treatment - i really need to see someone and discuss this!!

I had an extremely traumatic experience 4 and 1/2 years ago and ended up with post traumatic stress disorder following. For a prolonged period of time i had to look after an ill child meaning that i got very little sleep at all. I had 2 general surgeries within a 4 month period - both with complications one with resuscitation required. I have never been the same since this and have felt ill ever since. It is really interesting to read the postings on this thread. I am in my early 30's and obviously worried about the implications of this illness.

Hello Honeybean

It was interesting to see your posting after you had read our previous messages re the possibility of stress and trauma triggering PMR and GCA. I have a friend who has been diagnosed with Fibromyalgia and she has not been prescribed steroids for this condition so they possibly wouldn't help. However, once you have confirmed with your GP that you have also been diagnosed with PMR, then steroids would certainly help with the pain. Have you had ESR and CRP blood tests to see whether you have high inflammation markers which could point to PMR? Maybe it is wise for you to be referred to a rheumatologist in the first instance. I do hope you seek a proper diagnosis and solution soon as you have obviously been through a lot and this cannot have been easy with a youngster to look after as well. Hope this is of some help and good luck with your following up.

MrsO

Hello all

on the subject of trauma and stress triggering pmr I had a very heavy fall in feb this year and was going through a stressful time a couple of days later I thought I had flue and started getting stiffness and muscle pain to the extent that I could hardly move it got worse and in the end I could not even go to bed but sat up all night in a chair eating painkillers the doctor sent off a blood test for my esr and it came back at114 and he put me 30mg of predistone and after few days I started to feel better then it was like being on high octane fuel I was digging my large veg plot walking briskely with my dog no pain at all. But the side affects soon began to show mainly weight gain. I am now down to 15mgs a day but cannot seem to get any lower without the muscle pain comming back. I walk about 2/3hrs a day with my dog and do my daily chores but fatigue is a big problem I have got to put up with the side affects of the steroids the alternative is having no life at all. Iread that this pmr affects mainly women me being a man. I am coping at the moment with the help of the steroids and a glass or two of wine and the odd g& t any way I fel better for writing about my experience just hope we can cure it

donone

Hi and welcome to the club.

You should remember that prednisolone is not a cure for PMR although it is fantastic for relieving the symptoms, so as you reduce the dosage the pain will worsen, but only a few days. Because of this, you should take a pain killers regularly.

Through my experience you should not expect to be totally pain free and should not give up hope. Exercise is very good for our muscles, but too much can make them exhausted and tired, the result being in more pain. Gentle exercise like swimming and walking 1 - 1.5 miles a day is OK. Dampness makes the symptoms worse so using sauna after a swim will help a lot with your stiffness and pain as well as being very enjoyable and relaxing.

The side effects of predesole reduce as you reduce the dosage, but in the mean time you should not forget to take pain killers.

Hoping that one day there will be a cure for this disease and we will all be free of it.

Good luck, try to be positive and Merry Christmas.

I have read this thread with interest and would warn that when taking painkillers to check with either your GP or your Chemist that they are compatible with Prednisolone and not an anti-inflammotory.

There is a group of men who email each other as there experiences can be quite different to women's experiences with PMR.

PMR Fighters have the address - email morwe on this sight and you will be supplied with the email address for pmrfighters.

We also have an international survey running - this survey was devised by patients for patients to fill in and hopefully to aid research into cause and cure. It only takes a few minutes and is confidential - names are not required. The results are free to all who request them.

Unfortunately, I cannot log in to this site with my password - so cannot give either the email address or website. But emailing morwe will enable those of you who want the information to get it.

There is also a National Orgnanisation called PMR-GCA UK which is currently being set-up.

mrs K.

Hello msk and mrs k thank you for your thoughts and ideas I am taking co-codomal pain killers but only take them when pain gets too much I have just been told that my esr has gone up again so I cannot reduce my dosage of steroids how anyone can cope with illness without them is beyond me.I wonder if anyone ever gets over it or it is with you for ever.I find that mornings is the hardest time for the pain but I am ok by the afternoon any must keep battling on and hope for the best.anyway I wish you a merry christmas and a happy new year

donone

Hi Donone,

Having viewed a lot of other peoples experiences via this forum, I have yet to come across anyone that has [b:0a26f3eeb0]completely[/b:0a26f3eeb0] got over this. In some cases people have been pain free for an extended period of time only to relapse after encountering physical / mental trauma :? They do say PMR should runs it's course over 2 -3 years leading, to a full recovery, although I have yet to hear from anyone confirming this. If there is anyone out there who has, please, please do let us know!

Regarding more pain in the morning, I try to do about 5 minutes of some sort of stretching and gentle movements before getting out of bed, which I find makes a real difference.

Merry Christmas to everyone and wishing a full and speedy recovery to us all for the New Year!!

Ladies, I have met people who have made a complete recovery, also people who have had relapes after several years. Maybe PMR always lurks? My Rheumatologist states that 19 out of 20 people will burn out. The odds therefore are in our favour - fingers crossed.

here's wishing all a pain free and happy Christmas

Hi Pammy.

Thank you for your reply, you definitely made my day :D

I had nearly 3 years pain free after my first bout of PMR which lasted just over 2 years My advise would definately be if you do manage to beat it is look after yourself as I am sure that really overdoing it this summer brought it back So far I have reduced from 20mg to 12.5 and should be down to 10 mg in Jan fingers crossed !! Best wshes to all fellow sufferers and hope everyone has a pain free Christmas and New Year