I was diagnosed with PMR on December 12, 2019 and started on 10 mgs daily. I have also suffered from first, fibromyalgia (20 yrs) and then Chronic Fatigue Syndrome (12 yrs).
On Feb 1st we got a terrifying call from our son in Michigan ( we’re in Florida ), that our daughter in law had suffered a ruptured aneurysm, was in the hospital and not expected to make it. My husband and I packed quickly, had to make arrangements for our 17 yr old dachshund and got a flight out 6 hours later. Once there we moved into our sons home and spent the next 3 weeks caring for our two teen grandkids while my son stayed by our DIL’s side. Through many prayers and a complete miracle our DIL is now in rehab and will make a full recovery, but will be a years journey.
I felt pretty good while there, in spite of the stress and caring for everyone, however once home for a few days I am quite ill with a definite flare.
My question is, has anyone else suffered a flare and are not entirely sure if it’s combined PMR/ CFS flare or just CFS. Much of the pain and fatigue is similar with both. Does the prednisone need to be increased a bit at this point, or do I just hold out and treat it as a CFS only flare?
Thank you in advance for any information or thoughts you may have ♥️
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bunch1974
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Hi bunch2974, I am glad your dil seems to be on the mend. Stressful mental and physical events can cause pmr flare. I have fibro fir 20yrs too and always struggle identifying which is flaring. I have found, eventually, that taking pred is the fastest was to determine which was flaring, or indeed that both are. During and after the stressful events I have taken a 5mg burst for a week to see what happens. You can drop straight to 10mg after a week or so. But I usually return to a 1mg extra if the burst helps. Then 4 weeks to 10mg again if symptoms stable at pre stress level. I hope this makes sense! During this, if its both you can do your usual cfs flare routine as well. 🌻
Thank you for your reply and suggestions of how you have dealt with the combined flares 💕 I took an extra 5 mg of prednisone today and will tomorrow too and see if it helps with the pain and fatigue.
Trying super hard to avoid inflammatory foods from my diet also as I discovered that I feel much worse after going through periods of eating badly, such as the 3 weeks caring for my family while away.
A change in routine... Different meal and meal time, meds at different time and staying up later always mess me up. After family Xmas which are lovely and I enjoy I rest for a week. Fingers crossed you get the magic mixture if rest, the meds and your regular food help. Just try not to be hard on yourself.... That's often the next feeling!
What a fright and an ordeal for you all. I am so glad your DIL is on the road to recovery. Any advice I gave you would be a guess. I simply don’t know how CFS and PMR interact together. I am glad that you were able to rise to this massive challenge. Now you must rest and sleep. Treat yourself as if you have flu. You may manage without upping your dose that way, but see your doctor if your symptoms persist. 💐
I expected to have a flare of some sort, emotional stress has always effected me more so than physical over- activity and this time they were quite combined. I have to say though that this flare is much worse than usual. Thankfully I am retired and can rest as much as I need for as long as I need 🍀
How awful for you all - aneurysms are scary. She is young too - had they known about it before?
You could try a bit extra pred for a few days and see if it helps. I don't find it helps the fatigue of a PMR flare much, just the pain and stiffness. I wouldn't add too much though - adding 5mg is the usual suggestion from rheumies for a flare. If it doesn't help after a week you can go straight back to the old dose. CFS just add another unknown to the mix so it is a case of try it and see if it helps.
Thank you for your quick reply. Yes my DIL is only 42 yrs old. The other factor is her father suffered a ruptured aneurysm around the same age as she is and has been handicapped, in a wheelchair ever since. The neurologist told my son and DIL that it is hereditary and that my 16 and 14 yr old grandkids need to be tested for it.
Had that been done for my DIL , it could have been avoided 😢
I think I will take an extra 5 mg of prednisone the next couple of days and see if it helps. I find when I take it the pain in my shoulders, back of neck and upper arms let up, but the costochondritis (sp?) and my lymph nodes under my arms and ears just throb! In the past I took 600 mgs of ibuprofen twice a day for CFS flares but not sure that’s a good idea along with the prednisone?
It not really advisable for a long term fix but I and a few others recently discussed how a blast of 800mg of ibuprofen can really help back pain and I have used it for a week for costochondritis. Day 1 800mg with a meal, then the usual dose for a week. I usually take ranitidine of I do that just to protect my tum.
I read a bit of research about how fibro brain cannot deal. With stress and anxiety the same way as it can in a healthy person.
In the very short term and with a PPI or ranitidine famotidine it is probably OK - I wouldn't use it much but do use it to break the pain cycle. My rheumy does use high dose NSAIDs together with pred - but insists on a PPI.
It does worry me at times that they don't manage to join up dots. An AAA scan is so easy to do for anyone at risk - there is a screening programme in the UK, my husband was involved in the study that showed it was worth it. It is automatic for men over 65 but anyone at risk can be added to the screening programme by a GP or specialist and even the person themselves. There are doctors who believe that it is too worrying for patients to know they have an AAA - despite the fact that procedures have advanced a lot in recent years.
Thanks so much for the “hug” 🤗 Hugs are one of the best medicines out there. It really does help to have the caring support of those who understand what you’re going through ♥️
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