Me again.Getting really down lately.

[Hunter134]

As you know I've struggled with flares alot.I just got myself out of one the beginning of Mar.It took 20mg to do it.A week later I got some sort of prolapse but not getting an ultrasound for over 3 weeks.I never realized how painful it can be Then my cat got sick again so I cried for hrs as I sent my husband to vets thinking he was going to be put down.Well he came home with the cat aft meds but is still very dizzy.Sorry for the long rant but now I ve flared again Not sure what to do now?

[SheffieldJane]

So sorry that you are being so challenged Hunter. It doesn’t help that your Rheumie seems to lack the empathy gene. I wouldn’t be even trying to taper until the suspected prolapse was sorted out, you know how PMR loves stress! I am glad your little cat is a survivor and has wobbled back into your life. You are a survivor too, you will get through this. 🌹

[Hunter134 in reply to SheffieldJane]

I tapered down to 15 mg aft last relapse but I don't know what's causing nerve pain in my butt.Its going down my leg.Reluctant to go back up to 20 mg again but the pain all over I know it's inflammation.It seems the prolapse causes me more inflammation because it gets worse at nite

[SheffieldJane in reply to Hunter134]

It sounds like sciatica. Absolutely agonising. Not much they can do about it if it is, except rest and pain meds. but they should investigate. I had it after over enthusiastic new grandmother duties, it took about 6 weeks to settle. I would be tempted ( with medical approval) to return to my most comfortable dose. Really, rest I mean really!

[Hunter134 in reply to SheffieldJane]

Iam not sure I can even get a hold of my reumy.But I ll try pain meds to see if it makes it tolerable.Thank you for responding to me cause iam so fed up.

[SheffieldJane in reply to Hunter134]

I know the feeling. Actually, we all know the feeling and it does pass.

[HeronNS in reply to Hunter134]

There are heaps of exercises for sciatica on the internet. Try some of the simpler ones to see if they help. I self-diagnosed my hip pain as bursitis and the exercise I found really has been helping me - but I have a bit of a relapse today after overdoing things yesterday as we took part in a public walk to look at artwork on our local streets. It is so hard to remember how fragile we are becoming until we overdo it. Take care.

[Kendrew]

What you probably need to do now is just take a slow, deep breath!

You've such a lot going on and you can only really process one thing at a time.

Try and get the pain under control as best you can...speak to your GP, Practice Nurse or pharmacist for anything that might help you with this.

Try and take comfort from the fact that your dear cat did indeed return home and you can currently spend time with him. Enjoy that time and don't waste it on worrying about what might or might not happen in the future.

As frustrating as it is, try and accept the fact you've unfortunately experienced another flare and focus on 'managing' that situation effectively with reliably sourced advice and support. (ie. from some of our knowledgeable & experienced members here)

I love this, and have personally found it an excellent piece of advice when life feels overwhelming:-

"Grant me the serenity to accept the things I can't change, the courage to change the things I can and the wisdom to know the difference"!

Hang on in there. You'll get through this.

[PMRpro Ambassador]

Try to calm down - and yes, I know it isn't easy - and maybe it is worth speaking to your GP/PCP about some help of some sort because you do seem to be very uptight and anxious. It is understandable but can the GP do anything to expedite management of the prolapse?

Really you need to try to avoid yoyoing the pred dose - the butt and leg pain is almost certainly sciatica, probably due to the piriformis muscle being tight and pinching the sciatic nerve. There are exercises to stretch the muscles involved - you can find some online but the GP may be able to help you access physio help too. For me an 800mg dose of ibuprofen and heat over the painful area does help a lot - if you need more than the odd dose of ibuprofen, also take a PPI, omeprazole or the like. It will contribute to what you perceive as PMR pain bit more pred doesn;t always provide the best solution. But really - a hot water bottle is a magic piece of equipment!

If you need to stop doing things - you need to stop doing things. Pred isn't a licence to go back to normal and resting and pacing is as important as the pred in managing PMR and its add-ons. Don't kneejerk raise the pred, try other things first before assuming the discomfort it causes crying and being tense is a true flare. It isn't always. Look for some relaxation techniques online or look for a local practitioner if that is an option. Kendrew has given a lot of very good advice too.

[Hunter134 in reply to PMRpro]

Yes I know it's alot of stress going on.I seen my gp but he didn't even examine me.So aft two months I have no idea what's going on.My ultrasound is three weeks away.Our healthcare is terrible here.Hard enough to deal with pmg but now this .

[PMRpro Ambassador in reply to Hunter134]

Was having a rant with my GP a couple of weeks ago about the non-use of clinical skills and examination!!! Infuriates both of us!!

[Hunter134 in reply to PMRpro]

I agree I waited two weeks to see him and I was there ten minutes aft he entered the room.Now three weeks to ultrasound.You know iam a caregiver and it's been rough

[PMRpro Ambassador in reply to Hunter134]

I see mine same day - turn up and wait. I can speak to her on the phone - no secretary/receptionist/nurse to get past. And get as long as I need - as does anyone else so no-one whinges about waiting. It isn't perfect - but it is pretty good still. And she did house calls if OH needed to be seen - I couldn't have got him to her ...

[Hunter134 in reply to PMRpro]

You re very lucky.I know that aft my ultrasound I will need to wait awhile for a specialist.Hard when I know iam flaring and don't want to up my prednisone.

[PMRCanada]

It’s all so difficult at times. The return of chronic pain, multiple health issues, managing an AI condition, and dealing with the stresses of life can all add up to a feeling of being overwhelmed and helplessness. Sometimes it seems just all too much!

I tend to panic when I have a return of PMR symptoms, remembering that terrible first 6 months prior to diagnosis when I suffered so much. The thought of going back to that is terrifying and triggering for me. Then when other health issues emerge I get feeling down and wonder will this ever end.

When I get like this it helps me to vent to others on this forum, to a private online PMR/GCA group, to my daughter, and a few good friends….just to get the stress out instead of holding it in. What really helps the most is to talk to my therapist. She can help calm me down and keep me dealing with the present instead of envisioning a catastrophic future. One of the greatest reminders is that this is all temporary….nothing stays the same (which is especially helpful in challenging times). I’ve worked hard on not worrying so much about my (adult) kids. Consuming cannabis has also helped with my mood and had a calming effect, which in turn dials down my stress levels.

I truly hope you can enjoy your time with your cat. These are precious moments. I put my 16 year old dog down before Christmas and it was out of my love for him. Also hope you can get to the bottom of your prolapse situation and find some relief and resolution.

Remember we are here for you and “get it”.

[Hunter134 in reply to PMRCanada]

Thank you for the kind and wise words.Life can get hard are times where we can't quite catch our breath.I woke up this morning to my daughter crying hysterically over putting her cat down last night They have no kids so they took it hard as you and I would.I love this forum I've learned more on here than my Drs.Thank you❤️

[PastelsinArt]

I feel so sorry for all your physical pain and the worry you've had to bear as well. I've read the replies of others more experienced and knowledgeable than me, and one other route has occurred to me. Could you get to see a physiotherapist? When I had sciatic-like pain I was getting confused over what was a flair and what wasn't . My physio diagnosed it as piriformis syndrome, explained exactly what was happening and prescribed excercises that, after a couple of weeks made a huge improvement. What a relief that it was something I could overcome without medication. I'm still liable to flairs but not everything is a flair.

[Hunter134 in reply to PastelsinArt]

Thanks for your reply.I ll look into that aft for I get whatever prolapse I have fixed.It just takes so long to see Drs.