Feel like I have been hibernating the last few days!!!

[vicky561]

I know that you get tired with this but my goodness I feel like I can't get enough sleep. I do have a cough and a running nose but I just want to know is this normal to feel this way????

[Marijo1951]

My experience is that the 'Deathly Fatigue' is a genuine phenomenon. Sometimes I feel as though I've just done a 12-hour shift as a lumberjack when, in fact, I've only moved from the sofa to make myself a cup of tea. Having a cold can certainly make it even worse. You are definitely not alone...

[SheffieldJane]

The past week has been like that for me too. So much sleep and when the family are back home, still a struggle to stay awake much beyond dinner. I think a sinus infection has done for me. I feel perfectly alright in bed. Thankfully there is somewhere that I do.

[Telian in reply to SheffieldJane]

How did you get on with your appointment re your bruised eye Jane?

[SheffieldJane in reply to Telian]

Thanks for asking. The GP was far more interested in Australia than my eye, using up my precious 10 minutes. The bruise had faded and the eye whites were bright. He has given me stronger nose drops for the sinus. I now think I may have scratched or hit my eye in the night. One of those frustrating appointments when they don’t listen. Also he’d stopped my Pred prescription because the Endocrinologist had recommended Hydrocortisone. So I was able to sort that out. Aargh!

[Telian in reply to SheffieldJane]

Lets hope it was just that, Good luck with the meds change!

When do you travel?

[ALeCount in reply to SheffieldJane]

I’m so glad to hear your eye is doing better.

Did you decline the Hydrocortisone and get a refill of your Prednisone? My husband had our suspicions confirmed when he was diagnosed with Adrenal Insufficiency after the Synacthen test. He was sent to an Endocrinologist who replaced his Prednisone with Hydrocortisone. He tried it for 3 or 4 days, was miserable, and is now back on 5mg Prednisone (after being on 3.5 beforehand). Is it well known in the community that Hydrocortisone doesn’t work as well for PMR patients?

[SheffieldJane in reply to ALeCount]

These are my thoughts too. I have repeat dispensing for Pred. This has been cancelled, now I will have to go cap in hand for it, each month. I didn’t want to change to Hydrocortisone just before a long haul flight and several weeks in Australia. I don’t think I want to change from Pred to anything else. It hasn’t failed me, it’s just taking time. Did your husband experience the return of PMR symptoms?

I have to take an injection kit with me in case of Adrenal crisis.

[ALeCount in reply to SheffieldJane]

Yes, he felt that he was feeling worse in both a PMR related way and also in a Prednisone withdrawal related way. The endocrinologist wanted him to make the switch because the Hydrocortisone is easier on the bones, but in his case, it was absolutely not equivalent.

He is supposed to get an injection kit too.

Best of luck to you in getting ready for your trip. I hope your doctor will let you prepare as you feel is best.

[PMRpro Ambassador in reply to ALeCount]

Depends on the patient how it works - Megams uses HC fine, it isn't often introduced except for kicking adrenal function awake but it IS mentioned in at least one set of rheumatology guidelines as something to be considered once the patient is down to 5mg or below. Karools, OTOH, was also miserable with HC and had unpleasant adverse effects. I suspect it depends a bit on whether there is some residual adrenal function - and whether the PMR is pretty quiescent.

[ALeCount in reply to PMRpro]

Thank you PMRpro! That is helpful information.

[scats]

I felt just the same with a cold two weeks ago. I was taking 2-3 naps in a day and never feeling fully awake. Looking out the window today, hibernation appeals!

[Purple-Owl in reply to scats]

Same for me. I suspect I have flu I have felt exhausted last few days and nose running like a tap. I have had PMR since September 2017, now reducing Pred from max 20mg to 5.5. Two days ago got painful aches in neck shoulders and hips. Upped the pred to 6 then.7. I pan to take 6 today the back to 5.5. Hope it does the trick. Could the aches be flu rather than PMR? They have not gone.

[scats in reply to Purple-Owl]

I did the same went back up to 10 from 9 for two days, it helped a bit. Now I'm back at 9 quite comfortably. I think it was just a cold but OH had something much worse at the same time. Perhaps it was the same bug and he suffered more because he didn't have the flu jab?. Hope you're feeling better soon.

[Purple-Owl in reply to scats]

Interesting about your husband being worse because he didn’t have the flu jab. I did have the jab. Maybe it has helped though this is quite bad enough for me!!

[PMRpro Ambassador]

Normal no - usual yes! Especially when you have even a slight infection.

[DorsetLady PMRGCAuk volunteer]

Relatively usual I’m afraid.

I think you are Actemra as well as Pred, so that may be having an effect

Not enough of us Brits on that to comment really, but 2 powerful drugs must cause some problems.

Your cold/cough wouldn’t have helped either. So for the time being just give in gracefully and take as much sleep as you can or need.

It will go in time.

[DianeA1]

Sometimes I take a nice nap after breakfast, after lunch, and before bedtime. But between naps, I may mow, row, and walk a lot! I hope that you feel better soon.

[Purplecrow]

Early days of these disorders are seriously difficult for most of us. I found the need for extra sleep was irresistible,

I believe that sleep is healing and absolutely as valuable to recovery as medications.

I do set my alarm, allowing 1 hour sleep, then getting up. If I need more, a second nap is fine. The alarm keeps me from over-sleeping, thus contributing more to sleep-less nights.

Hang in there, you will get better...promise💜

[JanetGarrettN]

I'm sorry to hear this. I have had the flu the real god-awful flu for six and a half days. I never nap never have though I did take a 2-hour nap during this time I have slept 10 to 12 hours at night. I guess you'd call me hibernating inside living alone hanging out in my PJs though I have had baths and showers LOL. It is just awful. I and wondering if my most recent decrease from 8 to 7 mg prednisone after 17 months at the point where the adrenals start to try to kick in and is very long ordeal is playing a part in my sleep? I guess it will pass at some point but I am needing to get back to work and life! I hope you feel better soon Vicky.

Janet

[Jackoh in reply to JanetGarrettN]

Just out of interest- Did you decide not to have flu jab?

[JanetGarrettN in reply to Jackoh]

I had the I had the flu injection and I've had the flu twice once in the fall and now on day 8.

[Jackoh in reply to JanetGarrettN]

How awful for you!! Get better soon xx

[bunnymom in reply to JanetGarrettN]

Oh how miserable for you. Hope you are feeling better each day. 💐

[Balderick]

The steroids really play havoc on me and I now sleep around 4 hours and don’t have any naps. I have a love, hate relationship with the steroids as they also exacerbate any depressive feelings.

Wishing you all the very best

[Telian]

Afraid it is, just give into it - your body will tell you when it's safe to get off the sofa!

[vicky561]

Thank u all feeling better...sleepy still I did get the jab for the flu bug. Just have had that darn cold 😠