In free fall, parachute needed please….

[August7]

So, apologies, as posted before, PMR x 1 year, also thought by Rheum crossover of psoriatic arthritis. Osteoporosis and other chronic conditions which I’ve coped with for years.

Got down to 9 mg Pred a few months ago, sx flared up, Gp put Pred up to 12.5mg. Rheum was not happy and stressed s/e profile, wanted me on Methotrexate. I was initially quite scared of doing this due to those s/e and all the other meds I had been put on.

So persevered and got back to 9 mg Pred and wham. Beyond horrendous. I developed sharp stabbing buttock pain, primarily R. Side, so much so have had to use a stick to mobilise Gp phone consult insistent sciatica although no radiating pain down leg and bilateral sides, said put Pred up by 1mg and if that did not work it was not PMR and to contact Rheum (easier said than done).

Neck beyond stiff (I’ve always thought if like the Tin Man from the Wizard of Oz I could have a can of oil and apply inside I’d be fine), shoulders disgraceful. Could not lift R shoulder at all, could not get clothes over my head, L. Not as painful but grouchy. Spine/ ribs making themselves felt. One morning I thought I had broken my hip as I could not weight bear on my L. Leg due to the pain going up to my butt ?sacro ileac joint. I was close to calling an ambulance which I have never done.

so cause? I had tried to do a little bit of gardening (I cannot stop doing everything as it is just me, my son and mad pup, but I had tried to rest as the pain was non stop.

I took advice from one of our eminent members and started the Flare up programme as described by DorsetLady. Put the Pred up to 15mg.

D.3 Yesterday was an improvement but today I am floored again. Shoulders, neck, butt and so tired.

The stuff I had to do this morning became a monumental task and I have now given up and taken to the sofa. This frightens my son who is so used to seeing me up and running around. That in turn upsets me.

I am due to start MTX injections and was given an app in March. I am due a Rheum follow up but I rather feel they may delay that to see how I respond to the MTX. The surgery, I have not been seen in person, phone consults only and different people each time, I’m quite nervy about ringing there now as I feel a nuisance …bit like I do always posting on here at the moment so sorry.

Normally I can work stuff out and get on with things but not this time. Mentally it’s dragging me down, I’m scared, had awful thoughts about death, leaving my son, what would happen to him…my close friends are a long way away and since having to give up work a year ago (I am 66 but wanted to keep going until 70 to support the pair of us) I have become very insular and I think like Groggrim who was so brave to share, that comes from being an only child and in my case not a loved one,so withdrawing into my shell when I am up against it or ill is my natural defence.

So it is a bumpy ride at the mo, I do feel in free fall and I’m hoping to god the parachute does open.

Thanks for reading x

[DorsetLady PMRGCAuk volunteer]

oh dear…gardening has a lot to see for…it’s all too easy to think just one more thing to do, and then one more.. been there-with and without GCA..and now with OA/iffy back.. and still haven’t learnt no matter how many times I advise others 🤦🏻‍♀️

No apologies required, I assure you, why we are here,… 😊

Stick with increased dose for a bit longer… and indulge in plenty of TLC .. maybe watch the rugby today - although not sure that will be restful.

If the whole scenario is getting you down, then perhaps you do need to seek professional help - there are many on here who have felt similar so hopefully they will be along.. but perhaps have a look through this - but in the meantime we are very good parachutes..🌸

healthunlocked.com/pmrgcauk...

[August7 in reply to DorsetLady]

I appreciate that …and you really are amazing parachutes 😊

[PMRpro Ambassador]

Oh dear. Well - when MY sacroiliac problem did the same as you are experiencing, I did call the ambulance because I am totally alone and I couldn't move. Your GP needs a lesson - if it isn't down your leg, it is wrong to dx sciatica! Trouble is, the UK does have some strange rather dismissive concepts about back pain.Yes, lots DOES improve in 6-8 weeks but lots doesn't and while you are immobile how do you survive?

I agree with DL - you need proper and professional health, When your physical health messes up your mental health - it is time to seek help.

Never apologise claiming you are a nuisance - it is the purpose of the forum, a place to seek some solace from others when you are in a hole. If someone doesn't like it, they can not look. They may need it one day.

[August7 in reply to PMRpro]

It’s a sodpot isn’t it! Totally debilitating. I think I’m cross because the answer always was if I was feeling low to walk..long distances with my dog and son, take in all the beauty of nature and reboot. I’m struggling with not being able to do that and cross with myself that I can’t sort the steroids etc. Basically plain grumpy!!

[PMRpro Ambassador in reply to August7]

Having a real bah humbug day aren't you! Really can't think of a solution for you - I can just say sod it and ignore the world but you have your son to think of.

[August7 in reply to PMRpro]

DorsetLady said watch the rugby so that’s what I’m going to do! I’ve just been listening to a young thrush singing away so I need to savour that and maybe just practice patience. Mind you depending how the rugby goes 🏉….but thanks to you both💐

[PMRpro Ambassador in reply to August7]

You just missed a cracking match between Wales and Ireland!!!

[August7]

Did I???? Bah humbug!🤣

[Groggrim in reply to August7]

August7, I feel for you, I really do. Have a very gentle virtual hug 🤗. We all need each other here. There is such a lot of combined empathy, advice and knowledge and companionship. It is a beautiful thing. I know what you mean about the young thrush. We have so many garden birds who visit our feeders, robin, tits, finches, blackbirds (the male, we call him Frank, he's so tame he sits on the fence outside the kitchen window in the morning and stares in at me until I go out with the seed, then he hops round my feet as fast as I can sprinkle it on the ground. Seeing Frank always makes me feel better 🐦‍⬛Hope you feel better tomorrow x

[August7 in reply to Groggrim]

Thank you…x

[Orange_2022]

So sorry to hear how tough things are. Nothing to add to the other comments other than hoping your spirits lift and your pain diminishes. Wishing you well and thinking of you.

[August7 in reply to Orange_2022]

Thanks for your reply. Hope your Sunday is kind and involves a little bird like your pic☺️

[marionofnorwich]

You find friends everywhere not just where you live and there is a fine bunch here. I often feel like you do. I have a dependent adult daughter and when i feel that life would be so much easier if i wasnt living it, i have to think of her and how she would get on without my support and backup. But i find writing things down helps . It seems less burdensome than talking to my friends . I don't want to bring everyone else around me down sj talking with uninvolved others gets it off my chest. And finding simple things to do that use my brain rather than my body. You dont say how old your son is . Is he old enough to help you? And to understand that things have changed?

[August7 in reply to marionofnorwich]

So you totally get it…writing things down is a good idea and it is something I have thought about. Less thought more do!! My son is 32 so yes he is seeing the changes. He is very kind but not able to really take over anything and gets easily worried when things change. Thank you so much for your thoughtful words .

[marionofnorwich in reply to August7]

Sounds similar to my daughter who is approaching 48! Eeek. I have found that expressing worries externally helps to dissipate them. On a more practical note, I have been doing some chair yoga and basic bodyweight squats and have realised that just small movements really help and start to strengthen the whole muscular skeletal system. Just small and whatever you can do whilst squeezing buttocks together and tensing stomach muscles. I am sure it is helping me

[August7 in reply to marionofnorwich]

Thanks Marion, chair yoga sounds good. I used to do Iyengar yoga and miss it so that would be good to try😊

[Firstviolin]

Sorry to hear that you are having such a painful time. I just wanted to share my experience in case it was related. Having got my PMR to a manageable state and on 6.5 mg prednisone and nothing else, I began to have severe pain in my right buttock and leg. My knee would not bend to go down steps and standing for any length of time was excruciating. I went to the GP and asked if she could get me an Xray, but instead, without any exam or questions about the pain, she referred me for an MRI which cost me €300. I have had an MRI on both hips before I was diagnosed with PMR and really didn’t think an MRI would be useful. It takes about a month to get the results of an MRI. In the meantime I was attending the rheumatologist in the hospital for the PMR and I mentioned the pain in my hip to the clinic doctor. She examined me and told me that I had the classic symptoms of trochanteric bursitis, which I understand might be part of PMR, and has referred me for physiotherapy for that. I’m not holing my breath as it could take a year to see a physio publicly, but luckily I can afford to see a physio privately. The doctor said that my hips were very flexible otherwise.

I hope there is some relief - it helped me to know that I was not facing a hip-replacement on top of everything else! At 80!

[PMRpro Ambassador in reply to Firstviolin]

My worst problem with the PMR is trochanteric bursitis and it manifests primarily in an very inflamed sacroiliac joint. Physio helps a bit but the absolute hit was when my rheumy announced HE would do a steroid infiltration even if the Pain Clinic wouldn't - because I am on an anticoagulant they say I might bleed and that can be very painful. So was the SI joint anyway but hey ho! He did the injection using ultrasound guidance to avoid blood vessels, no bleeding and within 48 hours NO PAIN!!! After a week or so there was some return of muscle pain higher up, above the SI joint but nothing like it was before and a few months later he injected there which just about sorted that as well. He was surprised how long it had lasted when I saw him in the autumn but a year on, the SI joint problem hasn't returned at all. Some of the back pain is possibly due to arthrtis - and he was talking about PRP injections if the steroids didn't succeed entirely. I think the residual pain is muscular, it is difficult to tell. Some days I have no pain at all, some mornings there is something there but 1 paracetamol seems to do the job well enough. Ibuprofen is better but the Pain Clinic has a hissy fit at even 1 dose a day!

But if the physio doesn't work well - ask for a steroid injection. I had also had extracorporeal shockwave theray - no side effects or risks at all I'm told but while the first course was really good, the subsequent ones weren't as effective and it takes a long time to get a result. Especially when you end up not getting the 3 appointments regularly enough - and the first time I had 4 and that made a noticeable difference.

[Firstviolin in reply to PMRpro]

Gosh! Such useful information. Thank you!

[Viv54]

🌹🥀🏵️

[RonnaMae]

ready to catch you in a warm embrace

[August7 in reply to RonnaMae]

Now that has warmed my heart and made me smile…thank you