I have PRM since July 2021 but it started after 2nd Moderna shot. My first symptoms after 2 weeks from the shot began overnight. Terrible back muscle stiffness and screaming muscles. I used Tiger balm 4 times a day, heat, got new pillow. Gradually over maybe 1-2 months other symptoms settled in too. Shoulder pain (both) so I couldn't reach to a cabinet to get a dish, or turn over in bed (hips and shoulders and elbows and wrist pain; could not pull coves over me. Could not get up from a chair without help. It was a galloping situation. Finally say a rheumatologist. Sed rate then about 50. It has been as high os 100 since them. Several long naps a day! Went on 10 mg prednisone and overnight was at least 85 percent better. So, July to maybe nd of September on 10 mg steroid pretty decent. Got diverticulitis end of Sept and was in hospital for a week with IV antibiotics...there was an beginning perforation/abscess. It resolved on 22 days IV antibiotics. On October 19 i got the quadravant flu shot or older people. 2 das later fevers, chills and night sweats began. Still on 10 mg prednisone. Fever up to 100.8 for 2 weeks. Hospital again for a week. Elevated white count to 15000 with 91% polys. More IV anatibiotics incase an brewing diverticular infection. White count came down. Diagnosis, probabe delayed immune reaction to flu shot.
Began taper and got to 7 mg from 10. Flare up of back pain severely. Back to 8, then to 10 mg. Im still there. TERRIBLE back and side under arms muscle distress. Taking Ativan along with steroid as of today...to help with muscle issues. REally quite terrible and constant. I want OFF these steroids as they have escalated by diabetes severely...now on 3 different insulins, upped by BP so I am on double the drugs I was on to control it. i have stage 3 b renal insufficiency from a prior chemo 6 years ago. Creatinine now 1 and K is 5.5. My oncologist who is a great diagnostician says we have to get me off the steroids and use something else...mention IVIG or something like that. I am 77 and can't take chemo type drugs again.
Sorry so long but maybe someone will see something we have not thought of. I hit a despair and hopeless wall this past week NOT my MO EVER. Very positive and strong woman. Probably combo of steroids and pain so constant and sooo limited in activity. Can't do much of anything...Make breakfast, I do teach a bit online and enjoy that as I can sit!
Has anyone used Ativan for a period of time for the muscle distress? I am trying it starting last night maybe 3 times a day at 0.5 mg. I have been prescribed Flexeril and will get it today and see if that helps.
Had accupuncture and electrical stim and chinese massage yesterday with a woman I trust and saw for 2 years when I had pancreatic cancer 6 years ago. It was hard to ay flat on my belly to receive it. Screaming muscles. But, I will try this as I am beyond miserable.
okay, again thank you for being here and for all the great tips.
Microbe 1943]
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Microbe1943
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Oh my goodness, you and your body have had an extraordinary amount to deal with. I’m not surprised you’re feeling beaten. Two things that shout to me is the pain and high blood sugars. First things first, your blood sugar. If it’s tending to be on the high side as it will with Pred, it will reduce your resistance to infection and increase inflammation and even if you stop Pred and use something else that deals with inflammation of this kind , it’ll likely be something that suppresses your immune system. So, what professional advice did you get re diet specifically when taking Pred and what kind of diet are you on now? Do you have any diet restrictions or blood tests regarding your renal problems? Do you take any of the supplements commonly taken by those on Pred? If your pain is due to autoimmune inflammation then painkillers, antispasmodics, relaxants etc might help but won’t cover the root cause. PMR pain is due to reduced blood flow to the muscles from inflamed blood vessels and that needs dealing with. The trouble is you’ve had various insults that will raise the sed rate and it is very difficult to know what is what. If you have runaway PMR you probably need a higher dose than you’re having simply because the kind of things that trigger autoimmune activity keep happening to you. That may seem awful but to stop that pain will help stop the snowball effect of immobility, feeling of helplessnesses and depression.
I fear there is no alternative to pred for PMR - except possibly the biologic tocilizumab/Actemra which isn;t approved for PMR, just GCA, so it is off-label use. If he finds one - I hope he tells us all.
If your back and side muscles are in spasm that could account for that part of what you describe. I have it too and use a couple of alternative approaches rather than medication. A technique called needling does a good job used regularly and I also get steroid shots into trigger points in my back - much less steroid required and a more local effect. Good therapeutic massage and manual mobilisation of the trigger points can also help a lot.
Thank you. I did comprehensive accupuncture for 1.4 hours yesterday with electrical stim first for 15 min then some kind of Chinese instrument applied all over back for maybe 40 min with a special cream that felt like it had peppermint or one of those aromatics. It was exceedling difficult to lie face down (or on my back..that is impossible). I got through the face down and I do believe (time will tell) if the treatments helped the muscles. I don't expect a fast turnaround. This exact back muscle distress is how the PMR started tho I did not know it was PMR for 4 months. It started onMarch 13 2020. Then gradually over some weeks, maybe 6 one by one other syptoms arrived including shoulder, hip, pain, couldn't dress myself, or get up from a chair or reach for a cup. All of this congealed and I finally saw a rheumatologist, had bloods done and was examined well PMR the diagnosis. So why the return of al these first symptoms? It started wtih lying in a PET scan machine on my back not moving for 40 min It was terrible but I managed because I HAD to. I have not been back to baseline since then. So the question I am asking is: is this muscle distress a flare of PMR and if so, why are the other symptoms of it NOT present.? It something muscular due to the PET machine experience ALSO going on. That's why we will try muscle relaxants for some days starting today and the Ativan which is also a muscle relaxant. IF these help, we might have the anser..if theydon't then I am in a flare and need more steroid. That's the dilemma. Thank you for all your good thoughts and suggestions. Best, Microbe 1943
goes some way to explaining the link between PMR and myofascial pain syndrome (MPS). The same cytokines cause the problem, systemic in PMR but trapped in trigger points in MPS which can be felt as hardened knots of inflamed muscle fibres in large muscles. The prescence of the trigger points irritates the rest of the muscle and nearby nerves leading to referred pain in the areas the nerve supplies. The effect of PMR on the muscles amplifies the problem. I find anything that aggravates the MPS makes me more sensitive to the PMR - and vice versa. Just managing one or the other doesn't achieve a good result. Good management of both results in a pretty much pain-free life!
I woke one morning with my entire back in spasm and couldn't move without excruciating pain. A large dose of ibuprofen and some warmth enabled me to get to the car as my husband was going for an appointment as well. The ED staff were very sympathetic and I was admitted for their amazing first line approach: morning infusions of high dose NSAID and corticosteroid and evening infusions of daizepam to relax the muscles for 3 daysl The effect after just one set was such a relief - but unfortunately after the 2nd diazepam infusion I had severe atrial fibrillation. It is a known but very rare adverse effect of the i.v. diazepam but they thought it was the steroid and gave me another lot of diazepam! Then I was handed over to the Pain Clinic for the slower approach - which kept things under wraps until Covid turned up and the pain clinic was put into abeyance because the anaesthetists who ran it were needed in ICU. It hasn't been as bad again but I've been on a relatively high dose of pred to be able to function (I was a sole carer).My rheumy has now said he will provide the management the pain clinic was doing. All I need now is physio - a monthly physio session and pain clinic every 4-6 weeks would do it!
Can I ask what you have done at the pain clinic? Ours has just started up again after a 2 year closure. I have had success in the past with steroid injections for trochanteric pain syndrome and RNA for SI joint but they have all worn off now. I am on 10 mg but it’s not helping these severe pains. I have had to have a new referral as it’s been so long. My apt took four months and is a telephone appointment! I want to as much as I can for when they call.
Steroid shots - but not many. Pain Clinic here seems to be rather more hands on physical therapy than the UK offers! No mental training when the problem is an obvious physical cause.
Plus they use this technique here called needling and that is amazing for relaxing back muscles. It is done in two forms - wet and dry (sounds like sandpaper )
but what I have here is wet needling where they use a hypodermic syringe to inject a small amount of fluid under the skin surface. The other name here is quaddeln - because it forms blisters under the skin. The fluid can be lignocaine, steroid or even just saline - it seems to be the irritation from the needle that achieves the effect but my rheumy says he has had really good results with it - and I haven't had a failure yet, been having it done occasionally for years. I suspect it is a very Germanic thing. It is quite painful at the time but very few patients reject it because it works so well. I did find websites about it in the USA and a private physio practice near Newmarket in the UK, there may be others.
The only site I can find is just in German but they say
"In the wet needling treatment, the trigger points are additionally treated with medication after they have been pierced. A local anaesthetic is usually used. This leads to a rapid reduction in pain and causes an increase in blood circulation, which also stimulates self-healing. The drug effect is limited to the treatment site and has no long-term side effects. This form of treatment can also lead to a short-term increase in pain immediately after the therapy."
I had a session about 4 weeks ago and will have another next Friday - rarely works with just one session but repeated sessions a few weeks apart achieve trememndous relief that then lasts quite a time. I last had a couple of session at the Pain Clinic in summer 2020 after our first lockdown and the effect lasted until last autumn but the clinic was still out of action.
I hoped to get more physio instead but you only get one lot a year now it seems, so the rehab rheumy I saw did 3 sessions of extracorporeal shock therapy which he swears by for greater trochanteric pain syndrome - and it does seem to have made a big difference.
Thank you so much. I have found several clinics that do dry needling but not wet needling. I will give it a try while I wait for my pain clinic appointment. I have never been offered any mental health therapy at the NHS pain clinics but I do have identifiable spine abnormalities and typical trochanteric pain syndrome. I used to teach relaxation in childbirth and it helps a little but can’t heal the bones! I will ask about the shock therapy too. I did go to a highly recommended physio but found out too late that she does the pulling and cracking and I ended up in bed for two weeks 😳 Thanks again.
Hi Microbe1943, yep, my symptoms started a week after my second Pfizer jab June 2021. I decided to go a different route and not take prednisone, I have a pretty high pain tolerance so routine Ibuprofen, bengay, massager, hot and or cold packs, chiropractor are my go to therapies. No more jabs for me. I have also found that compression sleeves help a lot. I wear the Tommy copper compression tee for shoulders and it really helps with my shoulder and back pain, you might want to give it a try
I will see about the copper Tee! I can't take any any NSAIDS (like Ibuprophen) because of stage 3b kidney disease (from chemo 6 years ago for pancreatic cancer. I am in full remission now almost 6 years. Truly a miracle. It was metastasized to my omentum and peritoneum. Clear! So, I know intensity of physical things...this PRM is relentless. sometimes I feel despair which I never felt with the cancer...! Strange. Working with my emotions and spirit. The spiritual landscape helps me not fall into total despair. Thank you for your suggestions and story.
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