Well.. Upon last writing I was a bit premature to think that PMR was gone. I communicated to this group a very positive note that after almost 2 years I thought that PMR was about gone.
With that said I am back on 2 mg of prednisone and plaquenil as before. My question is.. I have right side groin pain. I did have this type of pain early in my PMR diagnosis. Not as bad.. however. Does anyone else seem to have this that stops them from walking. It grabs at one moment and just stops me from walking. Then at other times I’m ok. I do think without the prednisone however I would not be able to move forward. I have upped the prednisone from 1 to 2 mg and it’s a bit better so I’m wondering if it’s the PMR ? but is it tendon pain vascular pain ... wish I knew. Or something more sinister. Maybe I should go up to three or 4 mg and see if it helps any thoughts? Thank you all.
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Leilagirl
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It was my most disabling presenting symptom with Pred. So painful, affecting. walking, rising from sitting using cars, trains etc. If it was me I would raise my Pred to 5 mgs at least. Discuss it with your doctor, I am not personally familiar with the contribution Plaquenil makes. My pain was bilateral, so your doctors do need to discount other conditions.
My pain is bilateral at times. Right side is now becoming much more painful than before. Plaquenil was prescribed for a test that was positive for Rheumatoid a CCP test. It was a slight positive number. I appreciate your input on the increased dosage. Do you happen to know what the physiology is behind this groin pain. Not just the PMR but is it tendon? Ligament ? Or PMR or all of the above. I know you are not a fortune teller. I’m just very curious. This disease perplexes me.
It perplexes all of us. I assumed that the arteries in my groin were inflamed. It was the first symptom to go with Pred and if it returns, I know I’m in trouble. It causes the penguin walk.
Just an observation, around the time I was diagnosed with PMR I happened to see a diagram of the lymph system and was struck with how closely it matched the places of most significant pain I'd been experiencing. As there is no reference anywhere that I can find that the lymph system is connected to PMR (except non-Hodgkin lymphoma imitating PMR symptoms) I assume this is simply a coincidence.
My suspicion would be bursitis - it was a painful part of my PMR in the untreated days and took a few months to fade entirely on oral pred. Local steroid injections work wonderfully.
Pain on the outside aspect of the hip, around the top of the hip, is trochanteric bursitis. In the groin itself it is iliopsoas bursitis - I was quite convinced I might need a hip replacement given the position of the pain.
I have pain in both sides since beginning of Dec suggested both of your above diagnoses to GP but was advised Physio .This made it worse at one point I was walking with a stick but much better now .
Have seen 3 physio none can agree so have told me to go back to my GP to look at next step further x ray or scan .
Have appointment later this week .
I was thinking hip replacement but you have given me hope.
I have reduced Steroids by 1.5 since this and it has not been more painful so fingers crossed .
Back to using my stepper daily so hope that's a good sign
Physio will work for some underlying causes of bursitis - but in PMR it can be part of the PMR which feeds the inflammation in an ongoing manner. They do have such a touching faith in what a physio can achieve ...
It MAY be the stepper causing it - when mine is bad steps are next to impossible.
This note is related to the groin pain. I have been exercising fir 2 years in the pool doing water aerobics. This could be an aggravating factor. It’s very possible. I’ll change up what I am doing. It did not hurt in the water so made me think I was doing OK but now that’s changed. Thank you all!
As an ex physio...groin pain was usually a sign of osteo arthritis, which usually does not present before sixty or so.....
OA. Does not always give symptoms, symptoms come and go, while the X-ray is unchanged. However...steroids are anti inflammatories and mask the pain! An X-ray is the only medical thing that shows up OA..
However again....some people have advanced OA but... never have any symptoms, never have any groin pain.
However again...because growing pain was yr first symptom having PMR in the past, it seems likely it is coming from that again!!!
Yes, I am not a doctor but yr pain has settled with the steroids before so it is likely whether it does that again.......
Yes, of course you should go to yr GP because it can be sooo many things, ...
I’ve been in a similar dilemma as my hip pain has been on one side only. Initially it was bursitis on both sides when I got diagnosed with PMR 3 years ago but as I’ve lowered the steroids the pain has changed and only after a thorough hip x Ray has the OA been clearly visible. I’m getting a hip replacement shortly and hopefully this will sort it out. Interestingly the NHS x Ray report I had was not very helpful and only after getting more thorough examination and x rays/ MRI privately im afraid, could I see the difference between my hips and how severe the OA is.
Exactly. Often an X-ray does not show anything! But when they open the joint to give people a replacement they find the real amount of OA!! So never hang yrself up on an X-ray, so often they are inconclusive!
This is all very interesting I have reduced to 7.5 Preds a day split evening and morning, my right hip is very painful just to add to things I have a hernia on the right side so I’m even more confused as to what’s causing the pain, I’m still very active at work with a lot of ladder work. Also swelling of my hands has become painful most at night. Codeine 30mgs x 2 each morning helps, keeps me happy 😃 if nothing else, it’s all on the right side and also affects my right knee, feels like the knee would move on the wrong die if I was not aware of the problem. Thanks for listening to my rant
I'm tbe first few years after pmr dx I had intense pain in my left hip when went with rest and icing. But it always took a week or three. I have also had bursitis in my right knee, but this was previously injured, golfers elbow... Due to using a ball thrower for the dog, and tendonitis in both ankles, as well as a tender achilles. I think these just follow each other on as changes in gait and movement put pressure on ligaments and pred has a tendency to make them a little loose. The bigger problem arises if you don't treat the injury or pain seriously and ensure you apply the RICE strategy. I have nursed mine through back to recovery by being Very patient.
HELLO, I AM CONVINCED THE PAIN IS VASCULAR. MAY I MAKE YOU AWARE OF A VASCULAR CONDITION CALLED AVASCULAR NECROSIS... THIS IS WHEN THE ARTERIES SUPPLYING BLOOD TO THE BONE IN THE HIP ARE INFLAMED BY PMR AND PREVENT THE BLOOD SUPPLY TO THE HIP , CAUSING THE BONE TO DIE.... PAIN CAN BE GENERATED FROM HIP JOINT , AREA THE SIZE OF A FEELS LIKE A TENNIS BALL, THEN OVER THE ILLIAC CREST, INTO AND DOWN THE BACK OF THE HIP AREA, ALSO DEEPLY IN THE GROIN WHERE THE ARTERY IS... THE ONLY SOLUTION IS STEROID INJECTION INTO THE HIP, BUT FINALLY HIP REPLACEMENT. THIS IS NOT TO WORRY YOU BUT TO MAKE YOU AWARE OF ANOTHER PLACE THE ARTERIES CAN BE ATTACKED BY PMR. IT IS ALL ABOUT VASCULAR, NOT MUSCULAR, NERVES, TENDONS ETC.
I too have bilateral groin pain and my thought is that my groin pain might be originating from my lumbar spine rather than the PMR or it might possibly be both.
I had groin pain at the time of diagnosis with PMR. An X-ray for Osteo-arthritis in the hip 2 months earlier had said mild OA. I ignored that thinking all pain was from PMR. Now, 6 months later, I have had another hip x-ray and the diagnosis is severe osteoarthritis. The orthopedic surgeon says I need hip replacement. So, message here is that we just can’t blame everything on PMR and the osteoarthritic state in your body can change somewhat rapidly.
Sacroiliitis. Sometimes disabling, stretching round the pelvis. Physio was pointless. A good osteopath sorted me out. Went in with sticks. Left not using them. Comes and goes.
I went to the osteopath last week. My neck and shoulders have been so sore and achy plus I've had the groin pains you describe. The neck always concerns me as I am GCA (unconfirmed) plus PMR. My bloods are normal and I'm reducing down to 2.5mg. Only NSAID's help. I was fairly sure there was no flare and the osteopath's treatment and comments helped 90%. I Googled the muscle groups she said were causing my problems.
The neck stiffness was primarily due to tension across the shoulders and the Scalenes were in spasm. The daily exercises and heat pad have helped a lot.
The groin problem has now almost gone. For me it was the Iliacus and Psoas muscles which are joined by the Iliopsoas tendon. There are some really helpful exercises which will be familiar to those who practice yoga but if you Google "Iliopsoas muscle problems" you will find exercises.
Apparently this IP tendon can become shortened in those who sit a lot, the scalenes become tight if our posture isn't good and we sit with rounded or hunched shoulders. My posture has never been good and I sit around more now than I ever did. IMHO my age is catching up with me and the higher doses of pred have just masked what would have happened anyway. How many of us, as we get older, stretch or do gentle isometric exercises daily to maintain our flexibilty and muscle strength? I don't, only once a week at yoga!
My dog on the other hand who is now nearly 12 and very fit and active, always does his stretches after getting up from a lying position. Hmmm I think there's a message there?
Thank you. It is Good that you have a plan for these issues. I exercise regularly and water stretching every day.. I have for the past 2 years from the day I was diagnosed with PMR.
I will definitely start with the illopsoas correction and if it does not improve I will seek medical attention.
I am fortunate enough And I thank the Lord for this that I have been able to exercise regularly to keep mobile and not go backwards but at least stay course. But the groin and other symptoms of PMR remain as I try to taper.
I suffer with left sided groin pain which was diagnosed by X-ray as OA. It’s advisable to get checked out as you’ll only worry more without true diagnosis. Good Luck...
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