Thoughts from a PMR “survivor”
Posted , 25 users are following.
Dear PMR sufferers
I am a 48 year old male who recently recovered from PMR ( unusually young and wrong gender, yes I know! ) and I came back into this site just to give a personal perspective to those still suffering . Many readers are often recently diagnosed and looking for answers or hope, it’s not often that a “survivor” comes back to report that there is life after PMR, so here I am.
Firstly,I’m not a doctor, I’m an engineer so don’t attach any more weight to my views than you would do to any other non medical expert, feel free to assume I may be the village idiot and NEVER act on my views without discussing with your doctor. Right, now that that’s out of the way let me tell you I know what it’s like to have PMR, first the mysterious shoulder pain rolling over in bed, then the worry and confusion , gradually increasing stiffness , can’t tie my shoe laces , feel irritable and exhausted , overwhelmed , visit GP, referred to rheumatologist , rounds of blood tests ....terror that it’s alll sorts of worse things, then finally the diagnosis by elimination it’s PMR ,ok now we can do something, ,then the magical effect of steroids, often overnight, amazing effect, WOW I go from half dead to feeling perfect in 12 hours ...hurray I’m cured ? , no not yet,then maybe a degree of depression that this is not an overnight fix or worries about side effects of “pred”., osteoporosis , mood swings , weight gain, acne,hamster face ... I’ve had it all and come out the other side, it took me exactly 36 months but I followed the rheumatologist’s regime and had a few false dawns along the way where I had to up the dose again but I got there in the end , it’s been 9 months now that I’ve been off the pred, the pain is gone, there is some residual stiffness in the morning or after exercise but it goes away midday or after a hot shower . Life has returned to normal or as close as it can be, I still take the calcium/vitD because I did lose some bone density to the steroids but it was a moderate price to pay for shaking off the monster.
so what have I learned? Here’s a few thoughts. PMR is an autoimmune condition so the things that affected me may not be relevant to you but I still want to mention them in case they help others . Firstly I have learned without any doubt that certain foods aggravate this condition , this is especially true when you are coming out the other end of treatment and are on low doses of pred where it’s easy to get a relapse. The immune system has broadly two response mechanisms to external attacks, those being TH1 and TH2,autoimmune disease responses seems to occur when one of these 2 responses overreacts or becomes “stuck” on high alert , perhaps triggered by a previous virus or viral illness ,in particular a lot of people anecdotally have developed PMR after having had Epstein Barr Virus ( Also called glandular fever or mono nucleosis or “.mono” ) I’m one of those , Some doctors poo-poo this but there are too many of us for it to be random. However probably/possibly other things can bring it on as well, including being run down or stressed combined with a viral illness. Anyway, however you got it doesn’t matter you can’t change history and may never know, work with what you know today , you have PMR and you need to fight and suppress it until it decides to leave you .Personally I believe that I was what’s called TH1 dominant . My TH1 immune response was over reacting causing inflammation. Rheumatologists will rightly tell you it’s IMMENSELY more complicated than this but this is just a layman’s explanation. Now back to the foods issues . I can tell you that I tried and did EVERYTHING while I had PMR and I only came to one truth. Certain foods INCREASE certain immune responses and sort of suppress others , so if for example you are TH1 low and TH2 high then green tea may make you feel wonderfully better, however if like me you are TH1 high, green tea will make you feel dreadful , like your skin is crawling. In my case five things made me feel awful and caused all the pain to come back when I was on low doses of pred and coming out the other end of this illness, and they still trigger pain even now that I’m off the pred nine months, and this is why I mention them( and to any doctors or rheumatologists reading , please consider trying this with your PMR and also your arthritis / RA patients , you may be surprised at the effect it has on them, many of your older patients are probably glugging tea or coffee like it’s going out of fashion , so persuade them to go without for a week only and see what happens ).
The five items that caused me severe problems are as follows:
1) green tea( my skin crawled)
2) black(regular) tea( pain within 20 mins)
3) coffee, (pain within 20 min,including decaf and instant)
4) wheat( bread ,pizza , white flour etc, pain in my back and rib cage joints within about 2-4 hours and lasting for a day)
5) red wine(possibly also whiskey/bourbon) , muscle / joint pain next day .
So do yourself a favor , take all of these out of your diet for a week or two , then reintroduce them one at a time until you notice pain or you feel like crap , if you note this response give that item up forever.dont bother fighting it, just walk away from it.
I know how hard it is to give up tea and coffee , the comforting pep up and a nice little beverage to sip with friends etc but they are just not worth it if they are triggering your body to scream “argh! I’m being poisoned”, so suck it up and learn to like hot chocolate or ginger infusions and get on with your life, if wheat gets you then just adapt to the multitude of wheat free products out there, you’ve never been better served, if red wine hurts learn to love white...if none of the above affect you then consider what else you eat ,it may be different for you ,be vigilant , listen to your body ,make a food diary if necessary , be extremely wary of all stimulants, they possibly trigger immune responses, take note, adapt and move on, take hot baths, take more holidays , minimize stress and be kinder to yourself , Good luck to you all and remember ... like those visiting relatives and bad smells ... it goes away eventually ... Rob
9 likes, 19 replies
rusty49 Pmrsurvivor1
Posted
Yes, this sounds so familiar & with a good ending! I was diagnosed in July '16 and went thru the many physical and emotional ups and downs I read about. Fortunately, my Primary workss with autoimmune diseases.In addition to Pred., she prescribed detox and cleansing diets and various allergy tests. Everyone is different, but there are known foods/drinks that cause inflammation and should be avoided. Fortunately, I was able to identify both genetic and environmental triggers & have been off regular steroid dependency for over a year. I truly believe we are what we eat (drink) and there is light at the end of the tunnel -
Flutterbie57 Pmrsurvivor1
Posted
Thank you, thank you, thank you !
dtrfrog Pmrsurvivor1
Posted
Hi Rob,
Thanks for that post.
I've been surfing the web and your post is the only one I've found that makes any sense and seems consistent with what I've learnt so far.
So many sad stories on these sites of people struggling with coming off pred. I'm am willing to bet they continue flooding their bodies with inflammatory foods. I think its possible they will never get off the steroid completely if they do not drastically change their diets and/or the disease goes into remission.
Unfortuneatly medical doctors overwhelmingly know little to nothing about inflammatory diets which most likely trigger the disoorder in the forst place.
I was on 25 mg for 3 weeks and today start on 15 mg for 10 dyas, then 10 - 5 mg for 3 months ( alternate days) I am also gorging on supplements that reduce inflammation and am eating according to my blood type . Basically for me that means red meats,( especially lamb and venison) all fish ( especially halibut), no dairy at all except some limited cheeses like goat chees, lots of veggoes like dark leafy and broccoli, figs and dates for soemthing sweet, nuts like walnuts , cherry juice, green tea( yes it makes me feel fantastic , coffee is toxic. We will see how all this works.
Thanks.
Dave
Anhaga dtrfrog
Posted
dtrfrog, you'd be shocked, then, to learn that vegetarians, who are also non-smokers and eat healthy allegedly non-inflammatory foods still succumb to PMR and despite best efforts still have to stay on a low dose of pred for years until the disease goes into remission. I do not believe there is any way to force remission. If there were, we'd all be doing it.
I also think it unhelpful to blame those of us who have indeed done everything they could to live a healthy life, both before and during the PMR journey. I wish you well and hope that your disease does indeed go into true remission in short order. Good luck!