Train wreck

[Twopies]

In June and July I had 2 surgeries for colorectal polyps which left me in terrible pain, fatigue, weakened, etc. my whole pelvic area felt injured. Upped pred from 6 to 11 for 10 days. Now my husband is very ill, lots of ER visits, surgery that went south, etc. I upped pred to 7. My legs feel like jelly, I’m weak, I can’t sleep, I feel terrible all the time, can barely hobble around the house. I’m thinking it’s stress related but if it is, it isn’t going away anytime soon, thoughts?

[SnazzyD]

Gosh another person today with one thing after the other. So sorry, you’ve got all this. With your symptoms in mind I just want to share my experience of 7mg. It was neither here nor there on the adrenal front. The level was still a tad too high to make my adrenal function wake up, yet it was too low for a day of life, let alone what you’re going through. I felt rubbish and reducing was the only way to get out of that no-man’s-land dose, but I didn’t have your current situation. So, it may be you have a tonne of monstrous stress but not enough cortisol/cortisone to get you through even a day at the seaside so going up may be something to discuss with your doc. Just a thought.

How did you feel on 10mg?

[Twopies in reply to SnazzyD]

Rubbish is right. I’m gonna go back up (again—sad, I must say.). Am thinking it won’t be a quick fix, either. Will get to doc next week, hoping to get husband settled in for the weekend. Every minute is a new problem that requires attention, as I’m sure you know. Fingers crossed.

[SheffieldJane]

Oh you poor thing! What a nightmare! I honestly don’t think that you are recovering from your operation the way one would expect. I know it’s hard because your husband is ill but in normal times you would be returning to the hospital to ensure everything is well with the healing process. Although the stress is extreme, if it was me I would be very concerned about the physical symptoms. Is there friends or family that can support you right now? Your best bet maybe going to ER for yourself just to put your mind at rest. You may well be in a flare. It would be unsurprising and then 7 mgs wouldn’t cut it. You need sound medical advice and external support.

[Twopies in reply to SheffieldJane]

Thanks! Will get things checked out next week. Thinking 7 isn’t going to cut it. Husband in er last night 10 hours so I will have to wait for awhile.

[Twopies in reply to SheffieldJane]

Me again. I just went to urgent care, they thought I had the delta virus, I tested negative, of course. Good news: I’m gonna live. Bad news: I’m gonna live. Everything: perfect! Everything. All bloodwork, blood oxygen, blood pressure, etc. So….I came home and upped pred to 10 for the day, an increase of 3. If I don’t feel better tomorrow, which everyone here says I probably won’t, I’m going to up it to 5. If not better in couple days, well, insert curse words here. Hubby finally sleeping, I will join him shortly. Night night!

[SheffieldJane in reply to Twopies]

Oh bless you! That is reassuring. I find the fear is often the worse part. I hope the extra Pred does it’s magic and your husband turns a corner and starts to get much better. Let us know how you go. X

[jinasc]

Oh dear, that is a handful you are dealing with so here we go.

Did the 10mg help? If it did, go back up and stay there till things settle down a bit. Remember we cannot control it all - just have to work with it.

If it did not then I would talk to my GP.

BTW are you getting any sleep or lying awake at night, if lack of sleep the GP can prescribe a short course of Amitriptyline.

[Twopies]

No the 10 didn’t help. I just chalked it up to the bleeding and pain from the surgery which doc said is normal following surgery. And yes, I do have amitriptyline. May have to go back up to 10 again but I just did that after procedure July 28. Oh well. I think I’m just in a giant stress cycle that my cortisol level can’t handle. Husband back in er all night last night. Stressing out of my mind today—calling his docs, giving him meds, food, etc. worried to pieces. Gotta get a break here soon!

[PMRpro Ambassador]

Yup - all sounds oh so familiar. It WILL improve but it won't be quick and it MAY need to be treated as if the flare is back where you started because in a similar situation (minus your surgery) I have given up and gone back to 15mg to function reasonably well, there being no choice. And a day or two of bad weather, or a more demanding day, means I feel so awful I take a bit more to get through the next day and that does work. I saw a rehab rheumy last week, known him for years, and he wasn't even a tad surprised nor did he tell me off. I had a few weeks of very little sleep, now in a position to sleep well and it is better but you don't catch up - there's even research been published recently saying that.

Can you enlist help? Any sort - that allows you to have you time and sleep or whatever you need at that moment? And as has been said - I doubt your adrenal function is coping with any of it, recovery from the surgery or himself being so unwell. Is he at home or in hospital? I could never decide which was harder for me - the responsibility at home or the traipsing here and there around the hospital AND you are recovering still too. Did the anaesthetist top you up through the surgery and the following few days? That extra bit you used then is just as important now and it might not be enough.

[Twopies in reply to PMRpro]

Husband is home after 10 hours in er last night, 3 hours sleep for both of us. We are silly exhausted as you know. The anesthesiologist gave me very little extra, told me to pop up 3 for 3 days; I did 5 for 10 days, but didn’t help. I’ll get myself checked out next week when things calm down here at home.

[PMRpro Ambassador in reply to Twopies]

Godstrewth - I'm on my knees after 4 hours!! I can't even begin to imagine how you were feeling xxxxx

[YuliK in reply to Twopies]

There’s no place like home. You poor soul. I really hope that you can manage that well deserved rest.

You’ve certainly got such a lot on your plate at the moment.

My sincerest thoughts are with you and your husband. Not an easy task you have .

Wishing you both a speedy recovery.

YuliK xxx

.

[2013mayo]

Oh bless you, Poor you, it’s the ops, hubby being ill and PMR, of course you feel bad, you are trying to recover under very stressful circumstances, it’s just your body kicking off. It doesn’t like all this upheaval, it will sort itself out in time. Try to rest if possible and we will all keep our fingers crossed for you.

Take care

Sending you a big hug

😍☘️🌈🌻🌞🤞

[196_]

If it's any consolation, I had similar problems following a radical nephrectomy. 6 weeks later I had a major infection. I am still recovering. Am extremely tired.Some of your symptoms may be stress, but you are still recovering yourself.

Take things slowly

[Tahiri]

I’ve also had two surgeries for polyps in the colon, During the first , seven were removed and only one during the second. I chose to have no sedation -,just gas and air . It was painful, being blown up like a balloon, but I suffered no side effects and made an immediate recovery. What causes my problems is the intolerable stress caused by a relative who has D.I.D and who is just back after 3 months in hospital. Meanwhile, I’m down to 4 mg of Prednisolone for my GCA, and waiting for a test , ordered by the Rheumatologist, to check Adrenal gland function. All I want to do is sleep. It’s not easy , but we just have to soldier on , and hope for the best. By the way , I was fortunate that neither colonoscopy resulted in bleeding afterwards. My next one is overdue some months , as there’s a waiting list as usual nowadays. I think the stress puts an intolerable burden on us , as we’re reducing steroids, but such is life. You’re not alone .

Best wishes and hugs, Tahiri