Old sensations resurfacing?

[PMR2011]

This may sound strange... but has anyone else experienced feeling old injuries or scars as you’ve tapered? Spots that haven’t ached or bothered me in years (surgical scar, where I broke my wrist that sort of thing) I have become conscious of intermittently as I taper. Like “ghosts”!

[SheffieldJane]

Yes all the old war wounds in my case a broken shoulder. Also a repetitive strain injury from computer use in my neck. Strange isn’t it?

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Strange.....well yes...and no!

Depending on dose, and maybe person Pred can mask all pain - as we keep saying it’s a very powerful drug.

Certainly in my case, early days every pain, ache, whatever disappeared completely. However, as I got to lower doses, at least lower for me, they returned with vengeance!

[PMR2011 in reply to DorsetLady]

These are areas tho that hadn’t noticed in years pre Pred. It’s sort of like they’ve been re-nervated (is that a word)? And it’s not that they hurt, just sort of tingle or pull or I become aware of the area.

Maybe just a body hypervigilance with these lovely diseases!

[DorsetLady PMRGCAuk volunteer in reply to PMR2011]

I certainly think during/after PMR or GCA we are more aware of every little niggle in our body, which maybe we didn’t take a lot of notice of beforehand - just a glancing “oh, that’s odd”, then ignored. Since our illness we are apt to analyse every little twinge!

Plus of course, one has to remember, whether we like it or not - we have all aged -just a little! And with that comes a little more pain and a little more degeneration!

Happy days 😉

[SnazzyD]

In a word, yes!

[PMRpro Ambassador]

Difficult to say - I feel the war wounds too. But so does OH who only took pred short-term during chemotherapy 25 or so years ago.

[lizzie47]

Hello PMR2011.Sorry to hear you are having problems.I seem to be in the same situation too.Diagnosed with GCA Dec 2016,been working my way down from 60mg,Have hit 13mg twice and had to go up to 20mg twice.Now following DSNS and now on 13mg again.In Sept last year my Achillies Tendon ruptured and was on plaster,now the other leg is very painful and it feels like it is going to rupture so much so I am trying not to walk! Like you any thoughts would be really appreciated.Wish you well on this journey that nobody signed up for! Lizzie

[PMR2011 in reply to lizzie47]

So sorry Lizzie about your Achilles. Yes, when I was tapering in the teens I remember developing muscle spasms in my back and neck and feeling like all my muscles and tendons were very fragile. I found a miracle physical therapist and slowly rebuilt strength.

Currently with some neck troubles I sometimes wonder if I overdid on higher doses (moved lots of stone building a rock wall!) and maybe injured muscles but didn’t know it at the time due to Pred.

Glad you’re taking it easy, need to slowly rebuild lost strength.

[lizzie47 in reply to PMR2011]

Thank you.Yes I think when we are on the high doses of pred we feel as though we could rule the world! I know I did,if only we knew then what was to come things might have been different.I have exsersizes from a physiotherspist for the Achillies and also my back as I have 2 fractures but right now I am reluctant to do them for the moment although as you say you need to build up muscle strength,between the devil and the deep blue sea!

You look afterself too and not do too much either.

[Telian in reply to lizzie47]

That achilles does need urgent attention, my daughter in law is currently in her third month non weight bearing following same problems - had to have a plaster cast on first two months just progressed to a boot. This is her second time around had the other foot done a year ago! As PMRpro says prevention....

[lizzie47 in reply to Telian]

Thank you for your advice.Went to A&E yesterday without much success,they couldn't find any swelling so I shall speak to my GP tom for his advice,I really do not want to end up in plaster again.I hope your daughter in law progress's well and thank you.

[Telian in reply to lizzie47]

It's been a nightmare for her and it took some time for her to get where she is with surgery etc waited months and months for appt to see Orthopaedics. The reason she had both feet done was because she was compensating for her poorly foot all the time and then she accidentally went over on the good foot which snapped the achilles... the rest is history as they say, by the time she had recovered from that her poorly foot was knackered and she has virtually had it rebuilt - 3 metal rods etc. All of this as the result of a fall 20 years ago where she banged her heel, the GP had an x-ray done at the time and said it was okay. Years later when she couldn't stand the pain any longer Ortho said did she know she had an historic break in the heel?

Sorry it sounds like scaremongering - not meant that at all - but just shows how bad it can get if not looked at by the right people. Hopefully your GP will refer you.

[lizzie47 in reply to Telian]

Thank you for your reply.Your poor daughter in law has really gone through it and as you say what a nightmare.I do hope you can both see the light at the end of the tunnel soon.

Not a great deal of success with my GP today,he says ultra sound wouldn't show anything unless it has ruptured as the other leg did last Sept,so back to square one and just hope it doesn't rupture.He checked both legs and there were no tightness os swelling unfortunately he can't feel the pain as I do.My suggestion of prevention is better than a cure ie would a boot as PMR suggested be a good idea but that seemed to fall on deaf ears.So onwards and upwards with fingers crossed.

Thank you Lizzie

[Telian in reply to lizzie47]

Thank you Lizzie, I am sorry you're at a sticking point so to say. I sincerely hope you don't get any worse. Best wishes.

[lizzie47 in reply to Telian]

Thank you Telian.

[Megams in reply to PMR2011]

~Hi PMR2011

Curious to know what sort of "miracle therapist" you found?

My physio comes close to fitting that category - always keen to find a few more of these rare special folk.

[PMR2011 in reply to Megams]

Hi megams. She has a private practice so does not feel rushed or assembly line. She started with a thorough assessment and history. She was not familiar with PMR or GCA but was very open to learning. Her philosophy is that phys therapy should not be painful. She uses EMG (measures muscle energy) for biofeedback and ultrasound therapy. she has an uncanny ability to know where tension/stress is and her step-wise exercises for loosening and strengthening have worked very well. It really feels like a pertnership.

I have made steady comfortable progress since the first visit (5 so far). If you find one like her don’t let go!

[Megams in reply to PMR2011]

Thank you PMR2011 - she sounds a special lady & my physio is similar.

I value his support, knowledge & extra time given without added charge - he also owns his practice but think things could be different if it was a larger conglomerate organization.

He does use ultrasound from time to time but mainly acupuncture which helps with pain. I have multiple tendon, ligament issues + developed osteoarthritis in what seems almost everywhere but push on with gentle exercise 3 to 4 times a week @ YWCA.

I remember my physio with a bottle of wine + choccies especially Xmas, Easter - he is worth his weight in gold & remind him of such often. Never known a physio like him.

I hope you continue to thrive under guidance of your physio - onward and upwards.

Blessings

[PMRpro Ambassador in reply to lizzie47]

Get that achilles checked out asap - I spent some months in a boot and on crutches to reduce the risk of rupturing mine. It worked - prevention is better than cure.

[lizzie47 in reply to PMRpro]

Thank you for advice.When I initially went to GP last Sept with painful and aching calves he said it was musculal then 2 weeks later it ruptured.How would it be checked out please? After the plaster came off I had a boot too and would you believe I got rid of it 2 weeks ago! Sods law!

[PMRpro Ambassador in reply to lizzie47]

GPs can be useless with such stuff - mine caused mine by giving me a quinolone antibiotic while I was taking methylprednisolone, it is a known adverse effect and contraindication. "Oh, I've never seen that..." "You have now ma'am!"

If it is inflamed an orthopaedic doctor would be able to feel the swelling. If it were me I'd get someone to take me to A&E - especially given your history. Then if you are lucky you'll only need the boot - who wants a plaster cast!!!

[lizzie47 in reply to PMRpro]

My GP said the same thing when I informed him it had ruptured! Thank you for advice,will see if I can find a son to take me to A&E.

[PMRpro Ambassador in reply to lizzie47]

Be firm with them about your history!

I was SO annoyed - it was one of the very few times I hadn't checked for interactions and of course it happened! Neither the GP nor the pharmacist noticed it - and I always use the same pharmacy so they knew what I take.

[lizzie47 in reply to PMRpro]

Yes I can imagine how annoyed you were,we put our trust in our GP's and pharmacists! It just shows when we are already on multiple medications we have to be on our toes! Can't find any son's at the moment,always the way when you need them!

[Hidden]

Yes, as Jane says all the old war wounds reappear!

[Katrinaroper]

Yes...me too

[pegpowell]

Yes, an old rotator cuff tear reminds me of its existence every time I attempt to lower pred dosage. Also carpel tunnel syndrome and a sore ankle, badly twisted years ago, coming to life for a day or two.

[Janicep]

Same with me - an old rotary cuff niggle and very old Achilles niggle to let me know whose boss of all this

[Hidden]

Yes, a bit like Jane all the old War Wounds reappear, the Pred definitely masks/helps hide other areas of inflammation. Then as you reduce you feel the rumblings of an old ‘frenemy’ reappear. I’m suffering with an old issue in my back at the moment! 😢

In fact it’s time for a cuppa tea & then some Pain Meds! x