Massages & flare dosage

Have been browing on here and read something about massages being good/not good with PMR and now I can't find the posts! I am approaching a "big 0" birthday next month (not many of those left, this will be my 80th!), and I have two very good friends who want to treat me to some pampering, on two different occasions! Aren't I lucky to have friends like this?! However, I am wondering about whether simple massages to the neck and feet would have an adverse affect on the PMR as I mentioned at the beginning of this. Can anyone tell me whether I should indulge and just enjoy my first ever massages, please?

As a PS to my recent posts re painful fingers and a flare reducing 9/8mg, just to report that the flare has eased from upper arms and shoulders in the last two weeks being on 10 mg, but leaving me still with slightly stiff fingers in both hands and a little stiffness in outer thighs each morning. Had a blood test yesterday and ESR up at 57 but "nothing to worry about". (It was at 120 at onset nearly three years ago, so I guess 57 is an improvement!) Still resisting going higher than 10 mg so will hang in there for a bit longer, I think, unless you lovely experts here would advise differently, maybe zapping the remains of the flare with 11 or 12 mg? Any advice welcome and thank you.

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  • Hi

    It depends on the type of massage I like a deep one but that's not everyone's cup of tea

    Any good therapist should take a medical history including medication and discus any problems also can try the pressure so they are able to get it right for you .

    Due to your age she may only offer a light massage

    Just be aware I normally suffer the next day so take it easy drink plenty of water and you should be fine .

    Enjoy

    I would advise living a week or two between treatments

  • Ah, thank you, Rose54. You've answered things for me. Wouldn't have thought of taking medical notes (some!) and might not even have mentioned the PMR if I hadn't been 'alerted' here! I will certainly drink lots of water as you suggest, too. Yes, I am expecting one friend's treat a few days before my birthday at end of August and the other friend is making her treat in September, to spread out all my birthday activities, whatever they may be!!

    Thank you again, Rose, (an 'old hand' at this, I think!) I'm really looking forward to these treats as my one friend has been trying to get me to have a spa day for about two years but I've not been able to give myself a whole day away from my husband as I'm his 24/7 carer, but arrangements well on the way to being sorted now for my 80th!! Yippee!

  • I've just had a set of 12 massages to mobilise the myofascial bits - not really heavy deep massage but oh they were SOOO good! Like Rose I really like the deep stuff - but I also expect I may feel as if I'm flaring a bit because it released trapped cytokines. Drink plenty of water and have a quiet evening after the massage.

    They may not think that ESR is anything to worry about - but it would be good to get it checked again and see if there is an upward trend. If there is then you may need a bit more pred. Leave the dripping tap and the bucket will eventually fill up and overflow.

  • Thank you PMRpro and for your good advice, as always! The surgery rang me with ESR result and told me to make a routine appointment but said I could also ring back for a tel call with the doctor so might do that and ask for another blood test as you suggested. I was once told that the 'normal' ESR for my age was around 20 or 21, so maybe 57 might be indicating something causing the flare, apart from the recent attempted reduction of Pred. It seems I might have to take a firmer hand with a higher dose to finish off this flare. At least most of the pains have eased for which I am grateful and my little glitches are minor compared to what some others on here are having to deal with.

    Thank you for your massage info, too. I'm hoping the remainder of this flare will be settled down before my birthday as I intend to make the most of it (within reason) but maybe no late nights or dancing until dawn! Ha, ha! 💃 🍷 🎂 💆

  • Hi Lin-Lou, do you have your CRP checked too? Having the two gives me more of a feel of what is happening in my case, as my ESR has been above 50 for over two years while my CRP dropped to a normal of 5 although it is normally around 12. The doctors just shrug at my ESR results, I am not sure if that is good news or not.

  • Hi piglette, Funny you should mention the CRP. My locum GP had only requested the ESR so I asked the nurse if she could add the CRP on the form to also be tested and she told me they're not allowed to! She was surprised it hadn't also been requested. I will ask the doctor to include on next blood test as I knew the two go together, so to speak. My, two years is a long time with your ESR over 50! I know my previous doctor often spoke of mine being high and that was long before he retired a couple of years ago, but he could find nothing to account for it (pre PMR). Maybe it was all building up way back then?! It's all such a mystery, isn't it!

  • Hi Lin-lou, my blood nurse seems to do the blood tests I ask for, which is amazing. Probably with the cutbacks that may change of course. My ESR is noted as normal for this patient!

  • I think it must have been a recent ruling as I can remember asking the blood nurse to add a particular test once before and no problem. Might be to do with workload at the lab perhaps.

  • Sounds more like money to me!

  • You're probably right!!

  • Hi piglette,

    Thought I would put in my two bob for the record. My doctor who is very good, pro-active, up with the play, especially as she now has Kate Gilbert's great book, does not rate ESR and says CRP is a superior test. John (NZ)

  • Hi hiandri, I think a lot of doctors would agree.

  • I also like a massage to get out the myofacial knots. Sometimes an ache or tightness that I've put down to leftover PMR pain is really from a knot and once released feels so wonderful. It's also allowed me to continue to taper my prednisone dose when I might be too nervous of the aches to do so. Relax and Enjoy!

  • Thanks, TooSore. I'm getting to like the thought of a massage more every minute after reading posts like yours and the others! Can't wait now...

  • Yes!

  • Hi Lin-Lou. I do love a good massage, but unlike the others now only ever have a light touch one, since the deep ones leave me feeling bruised and battered! I also go for a massage because I want it to be relaxing and comfortable. I don't do pain when I am at the spa!

    As it is your first one I would suggest very light touch to begin with. You can always guide them during the session so don't be afraid to let them know it's not comfortable or to apply a little more pressure here or there.

    It sounds ridiculous but it also took me while to know where to put my arms when I was lying on my front!! ! Instead of moving and making myself comfortable I suffered in silence for the duration of my first massage as I thought it was best not to move unless directed to do so. Please do not suffer in silence as I did. Just tell the therapist you need to shift your position, however many times it takes.. You can also ask for a cushion as well if you need it.

    You will need to complete a questionnaire and should arrive about twenty minutes ahead of your appointment time in order to complete this ahead of your treatment. They should also discuss your medical history and medication, as this may influence what they can and are prepared to do for you. For example if a client has Osteoporosis they may not agree to attempt a massage - depends on individual spa policy.

    I had my first massage since diagnosis with PMR two days ago. It was whole body with a focus on my most achey bits ie back of thighs. I do love my fingers and toes being massaged gently as well. However I stress I am not at present experiencing PMR pain, just aching.

    You will need to drink plenty of water afterwards.

    Another tip if you are going to a spa - they don't advise swimming for quite a while after a massage. So suggest massage is booked for the afternoon so that you can use the pool in the morning?????

    Have a great time. Happy 80th. All the best.

  • Thank you Marilyn1959. What a lovely description of what goes on at a spa, perfect for me as I've never been to one. I think I might have been like you and afraid to move, etc., but after your post I shall not be so feeble! I think we are only going in the morning for the feet and neck massages and then lunch as I said I didn't want to "reveal all" with my legs a complete mass of ugly dark "bruises" apart from a not so attractive 80 year old body parading the pool!! Seriously, I also have tinnitus (27 years) and have avoided pools for most of that time, inspite of ear-plugs being available, of course. The tinnitus keeps my head busy with whistling, droning and four notes of "music" up and down the scale, so definitely don't want anything else added to that!!

    On a happier note, (just noticed the unintentional 'note' pun) I went to the chiropodist this morning and she massaged my feet for ten minutes or so. I was in Heaven! She thought I needed a lift as I didn't look my usual self today, so that was kind of her.

    Thank you again for all your advice and helpful info. Most appreciated.

  • I get a weekly massage and find it wonderful. I go to a massage school, get a different therapist weekly, pay a senior citizen rate. . It is important to speak to the therapist before they begin work to tell them the degree of pressure you want, the areas of focus you prefer (I like neck and feet), if you want lotion or oil. Do you prefer a man or a woman? Make sure you tell them to adjust the pressure as you go. In some areas you may want deeper pressure than other areas. The combination of relaxation music, human touch and pampering is a worthwhile experience. Last week I was in NY and went to a new place. The therapist was Asian and probably didn't understand my requests. Some parts of the massage were good some weren't. I loved hot stones on my back. Def try hot stones if they have it. I said no face, he did face. It was good. I said feet, he didn't do feet. Had to ask him to reduce pressure. I was happy to have gone. After that I went to a beautiful garden in Grenwich Village. It was lovely. It is very important to treat ourselves like the royalty we are! Indulge in all experiences that give joy and a break from pain and suffering.

    Please let me know how you like it. Massage is not optional. Enjoy!

    Sandy

  • That gave me a few smiles, Sandy, thanks. How lucky having a massage school nearby. No wonder you go weekly! Carry on enjoying them. You deserve it, as they say!!

  • I am having the same problems as you with painful fingers. Mine swell up a little too. But since mine has been steady regardless of my dosage my rheumatologist and I are thinking it's something else.But so far have not been able to do an MRI on my hands. I also have arthritis in my thumb. So my point being that I wonder if it is PMR in your case or something else.

  • Hi Amkoffee, I remember your recent post saying you also have painful fingers with swelling a little as I did, too, and like you, I also had arthritis in my right thumb and carpal tunnel many years ago, quite badly, but then it 'disappeared'. These pains are just in my fingers and slightly in the wrists and as you said, I'm not sure whether PMR or RA. Someone else (lost the thread to it now) also gave a tip about Paracetomol being able to ease RA but it wouldn't touch PMR. On that thought, tonight I am going to experiment by taking a Paracetomol in the early hours of the morning to see if it has any effect on my fingers which are always stiff from around 4 or 5 am, and to see if the stiffness eases before I get up and take the Pred (which does help as the day goes along) with my breakfast. It's a bit "hit and miss" but if the pain/stiffness is helped with the Paracetomol, before taking the Pred, then it would indicate probably RA. If it doesn't help the fingers, then it's likely to be PMR. I'm no expert but thought it can't do any harm. Will report back here if anything significant!

  • I hope it works for you. My rheumatologist started me on RA medicine to see if it would help. So far I have had no help from it but she said it can take at least 4 weeks for it to start helping and longer for it to have any real effect. I believe I am starting week 3. As far as the Paracetomol isn't that an ibuprofen? I was always told that you should not take ibuprofen with prednisone. But I think it was because of stomach upset. So if you can handle that I guess it would be okay. Either way I hope you get some kind of result from it. Good luck to you

  • Thanks, Amkoffee. Re the Paracetamol, that is the one Painkiller I can safely take according to my GP (heart, kidney probs) and I've also read somewhere that it works fine with Preds. Thanks for the concern, though. I'm still getting low level pains in my hands, mainly the first two fingers which are still slightly swollen, but I can live with that. Just hope it will calm down on its own soon, or the 10 mg Pred I'm sticking to will have some effect. Without tempting fate, it seems my flare symptoms have been dealt with at 10 mg. I did wonder what happens if my hands are, indeed, due to RA so your post told me that there is medication for it (but no rheumy appt. until Oct!) Do hope it will "kick in" for you soon and I do sympathise with you and the long time waiting for some sort of relief. Good luck!

  • There is a test for RA that your rheumatologist can run. Mine came back negative but my rheumatologist said they can be negative and you can still have it .

  • Thanks, Amkoffee. Don't know much about procedures for RA so that is helpful, though doesn't sound as if the test results are always helpful! Have to mention it next GP visit, I think.

  • I went for a deep tissue massage and for me it was really painful on my arms and legs. Back was the only thing that didn't hurt. I think I put this on this blog and was told not a good thing to do until this goes away. I love a massage and was told of another one to get on this site that was better but you have to get someone that knows how to do it and where I am there aren't any but I am sure someone can come up with the name.

  • I have never had a massage effect my PMR, I have been going to a chiropractor/manipulator for the last couple months and have improved my flexibility and painful tailbone! I too have had sweeping on the base of my index finger, only the right hand. I have read if both sides are effected it could be osteoarthritis. Just wanted to share😎

  • Thank you for that, Lafontainepam.1. Glad to have any hints, tips, experiences! Ref the 'both sides' pains, I will probably be posting on here tomorrow with a follow-up on my "painful fingers" earlier posts. I'm trying to work out whether my stiff fingers are PMR or something else and "experimented" with Paracetomol last night. Concluding episode tomorrow, hopefully, after I see how tonight/early am goes!

  • I think too many people make too much of getting a massage. I love massages, I suffer from severe pain, numerous autoimmune rheumatoid type diseases. I always liked to be touched, to be squeezed, to have "good pain" as I call it. If it's for you, do it, because it does really help.

    Avoid real deep tissue massage on your legs so not to bring on a blood clot. Other wise, relax, and enjoy it! For me, it's something I really look forward to - it really helps.

    Happy birthday!

  • Thank you, Kit, and for the birthday wishes! I still have until the end of August for my birthday, but plans being secretly made for before then, so nicely spread out!

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