Hi, about 2weeks ago I broke my ankle , kitchen cabinet fell on it !! I had some good advice from Pmrpro . since then.I've had a few complications, constipation, low sodium and potassium but they seem to have been sorted out . My question is that my Pmr pains all seem to have gone away .! Do you think that my body is concentrating on my ankle and can't cope with anything else ? Or what ?
The nurses in A&E seemed to think that the Prednisolone had helped with lack of pain when I did it because I should have been in more pain!
I'm on 5mg at present ,should I tape r to 4.5 mg a bit quicker or stick.r
Thank you💚
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Comben
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Thank you I do appreciate the advice . I really don't want any other pains adding to the equation . As always very good advice from you all. Not sure about the kitchen cabinet jokes, it's a bit of a sore point😩
Yes, I’m sure it is a sore point….but sometimes the only thing to get you through is to see a lighter side of things …sure everyone is sympathetic as well.
I certainly wouldn't taper until the ankle is sorted, Enjoy it - and yes, I suspect the immune system is distracted! I am pleased to say my kitchen cabinets are all very firmly fixed to the wall!
Mine have been up there 20 years! But they are fixed into a very solid concrete wall - none of that plasterboard stuff here - don't even know if they use it to be honest ...
I thought that and ended up with a kitchen wall cupboard sitting on my shoulder while I was preparing veg for the Sunday lunch. I was 6 months pregnant at the time 🫣. It was a bit of a shock!
So sorry! When I broke my arm and ultimately had shoulder replacement surgery I was at 3 mg of prednisone and I'm still there. I felt my body had enough to deal with without changing my dosage. As Dorset Lady said,.... I would coast. It gave my body one less thing to deal with.💞
After I had major abdominal surgery, I thought I had gone into remission, and was convinced that PMR was over.... sadly it returned. I think it was due to the fact I was forced to rest a lot after surgery, I assume that you to are some worth taking it more easy too. Maybe this is why the PMR symptoms goes away. Food for thought I think.
Same with me. Had some colon removed and felt the best I had in a long time. Turns out anesthesia gave me a stress dose of steroids IV for the operation and I coasted on that for a while!
This is such a conundrum for me. I feel worse if I do heavy lifting or gardening etc, but if I do nothing, I lose muscle mass. I am off of pred entirely. PMR has not gone away, but I can live with it. Not that painful…just feel old and stiff and a bit sore. Worse after more activity. 🤷♀️I am seeing a new rheumatologist in a couple of weeks.
Walking and exercises with light weights also maintain muscle - doesn't have to be Mr Universe levels!
Beware though - if the PMR is still active, the leftover inflammation builds up over time and can eventually leave you where you were originally. Even a slowly dripping tap will eventually fill a bucket - it just takes longer.
Hi. I broke mine 18 months ago. Was on 18.75. Funny number but hey ho Anyway. Never felt a thing pain from my ankle (had had a bottom lunch brunch tho)! But afterwards nothing. And the PMR just disappeared for weeks. Heard similar too. I do believe the immune system stops attacking us in these circumstances and does what it’s meant to do, heal a real problem. If only they could bottle that process. It did make itself known again but have managed to get to 7.5 pred now. But I stayed on the 18.75 for months whilst the ankle was healing. Don’t taper now. In fact the hospital were giving me injections to top it up too whilst in there Said the body would normally produce extra when things like this happen but obviously we can’t. Wishing you a speedy recovery
Have had PMR perhaps 5 years and am in great shape but probably on 5 mg prednisone for life and am 81 now, I take leflunomide also. All in all I am a happy camper with no side effects as long as I stay the course. Sometime my sed rate climbs, sometimes other marker climbs, but eventually they are normal again.
Warning: this is a completely unscientific response! - but from my own experience … Years ago, before I had PMR, I was suffering from an extremely painful arthritic hip. I could barely sleep at night for the pain when lying down, barely touched by painkillers. Then I suffered a subarachnoid haemorrhage (aneurysm in my head), which meant weeks in a hospital bed, and during all that time I never felt my hip at all. It wasn’t the painkillers - all I was given for my head was paracetamol - but I firmly believe that my body was, as you say, concentrating on my head. If your ankle’s painful, that could be it.
stay the course with meds!! I recently had back surgery I was fully expecting a flare but like you my PMR went on vacation! week 3 I said to myself “your PMR is in complete remission” I dropped from 7.5 to 7mg and soon all heck broke loose we’re talking almost back to square one type flare…
If you are on painkillers for the surgery, and you don’t have PMR pain, then what you thought was PMR pain wasn’t PMR. Regular painkillers don’t work for PMR.
I am actually in the hospital right now with a bowel obstruction. Lucky me! But they were able to clear it without surgery and get discharged today. I noticed the first day zero PMR pain. I always have a bit of morning stiffness but none.
I was fasting with no food or water for 3 days. Not even ice chips. And had lots of drugs going through my IVs. I wish I knew what it was.
We will see what happens when I get home. May have to give up my morning coffee if that is one of the culprits
How horrible for you. Mine was from a hysterectomy 30 years ago that created scar tissue. Who knew? It was the worst stomach pain I’ve had in my life. I thought I had food poisoning but after throwing up for 12 hours decided to go to ER. They actually didn’t do surgery but cleared it with a dye that goes through your colon in 20 hours. The last X-ray showed no blockage but now I’m paranoid it will happen again. I’m afraid to eat
Like I said I’m still in the hospital. Yesterday they started me on liquids and this morning had a soft breakfast. I only took a few bites of things but I’ve kept it all down and no pain. Looks like I can go home. Not the way I wanted to lose weight that’s for sure.
The best way to prevent that is having the adhesions, scar tissue from the hysterectomy, surgically removed. This can be done laparoscopy. There is no diet which really fixes adhesions. The scar tissue stiffens in time. Living on liquids and low fiber is no guarantee it won’t happen again. Drink coffee all you want.
I also had a hysterectomy but my obstruction was from the anterior approach to help correct scoliosis at age 60. The hernia was an accidental hole in my mesentery. My small bowel got trapped there over time. I had a couple of obstructions before the near fatal one.
In recent years surgeons add some substance to prevent adhesions before suturing up.
I do have theory that the body/brain pain signals in some ways will "concentrate" on one pain. Maybe even cannot process too many areas at once physiologically. I have had this happen, for sure. Like if my IBS is in a bad "episode", I don't feel my other pains really. Again, just a theory but makes some sense. Sorry about your ankle
Massage therapists' clients say, "The pain moved". We know it doesn't really move, but if it goes away in one place then the next most painful place is felt. We think it's an adaptation of evolution. It would be unbearable if we felt all our pains at once!
I dropped a full laundry basket on my right hallux, thought I might lose the blackened toenail. I didn't, but since then my pmr symptoms have decreased and without being on Prednisolone, albeit that my CRP last Friday was 55. Mild pain and stiffness, soon relieved by using TENS for 30 mins 'prn'.
Oh that's nasty! I'm sorry , I think our bodies have to put up with a lot of pain with Pmr let alone adding something else to it ! I did wonder about Tens machines but hadn't spoken to anyone who had used one . So you recommend the m ?💚
Yes Comben, it was extremely painful. Fortunately, the nail bed wasn't too traumatised, and fully recovered.I find TENS greatly relieves pain and stiffness on waking, and use it on mornings when needed. This morning, I didn't need to so just did my stretching exercises I have done religiously for 20 years since a back injury. It may be worth trying TENS, whether or not one is on Prednisolone. The setting I use is a wave, which radiates outwards from the pads.
Thank you so much for your advice. I think I will try the Tens i have been thinking about it for a while so maybe now is the time 😏. If we could just get rid of some of this heat! Take care and continue to decrease the pred. 🌝
Thank you for your good wishes Comben and, of course, I send the same to you. I need plenty right now, because the news from my oncologist last Thursday was not so good although I was kind of expecting it. More surgery, more chemotherapy. It is because of all the associated reasons, that my GP was prepared for me to try without Prednisolone and for me only to commence if my PMR-type symptoms became intolerable. My ESR and CRP results never had been convincing, until last week in A&E blood taken showed my CRP level as 55 so now probably conclusive. My GP prescribes me Co-codamol to take on a prn basis. I haven't needed it for a few months, as I am rarely disturbed while asleep at night and any pain and stiffness is remedied by using my TENS for the first hour on waking. Placing the pads strategically on the sites from where pain radiates. I had none yesterday morning, but this morning I did need to use TENS mainly on my right shoulder and side of neck. The nice thing about TENS is that one can be mobile while it's used, so getting up to meet deadlines is easier and obviously once mobile PMR symptoms usually begin to settle down anyway. I feel lucky to not have it as badly as some members and hope that with all I am burdened with from ovarian cancer, it doesn't progress further. The PMR problem came on six months after chemotherapy, so as it is related to one's auto-immune system I have thought the chemo was responsible as it does knock out one's auto-immune function. Experiment with the different settings until you find the ideal prog for you. Sometimes I become so relieved from pain, I relax and awake later with the pads still in place! Cycles are only about 15 mins, and the device automatically switches off so not a problem. Repeat, if necessary. Good Luck ... Hopefully, it will help improve living with PMR for you too. xxx
I'm not clear why a possible cancer diagnosis means you need to stop pred - it is used alongside chemotherapy a lot. And of course - the PMR symptoms COULD be due to something associated with your other problems.
Hi PMRpro - I had explained sometime ago on this site the reason for me not resorting to taking Prednisolone. Yes, as you correctly have stated Prednisolone is used alongside chemotherapy; in particular as prophylaxis while on the MEK inhibitor, Trimetinib. One of its nasty side-effects are headaches, so I shall be discussing my current position with my oncologist before a final decision on treatment is made. As one should understand, fighting advanced cancer is not only physically but also mentally challenging. Prednisolone could (or would) bring on so much more for me to cope with. Hence, the reason why my GP is cautiously supporting me through my PMR journey. At the moment, I seem to have a small amount of luck on my side with my PMR symptoms being relatively mild compared to others far less fortunate. Regards.
Oh i am so sorry that you are having to go through all that ! Thank you for all your good advice and I'm sending a big hug and healthing thoughts and hope for a good prognosis. 🙏
Bless you; it's disappointing but at least albeit as ghastly as treatments are at least there are still other options. Please let me know about your TENS experience - I hope it proves beneficial to you. Best Wishes.
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