I have been on 1mg of pred for several months (diagnosed Dec 2016 and started on 15mg and have been slowly reducing since). I seem to have really good days when I feel like my old self but some days I cannot stay awake in the day. The tiredness just appears and I just sleep. I fall asleep when I am reading, when watching something really interesting on TV. Yesterday, for example, I had had a reasonably night’s sleep so offered to drive as for a change my concentration abilities seemed “safe”. I drove 45 miles, we did a couple of hours wandering about Porthmadog, having a bite to eat, some window shopping, and as I felt tired my husband drove home. In my opinion nothing strenuous but I couldn’t stay awake and slept most of the way home.
This seems different to the fatigue you get with PMR so your thoughts would be gratefully appreciated. Thanks
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Urtica
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I think that it would be a sensible idea to have your Adrenal function tested, initially with a short Synacthen Test. You say that this feels different to the deathly fatigue that we experience as part of PMR. It may be of assistance to you to see an Endocrinologist. This could be potentially serious and needs to be discounted. Good luck! There is nothing to the actual test. You are injected with an Adrenal stimulating substance whilst on no Pred. and then 30 minutes later you have blood taken and tested. The result is then compared to your initial blood test.
Would agree with SJ re adrenals. Even if they are working (or capable of working which is what the test shows) they are not up to 100% capacity yet - and probably won’t be for some time.
It can take up to a year after you come off the Pred for that to happen.
However you must also consider you are only 2@half years into Pred, maybe a bit longer for PMR so, although it may feel different, it could still be partly attributed to your illness.
Thanks for your reply. I have to go for my shingles injection on Friday so will try to make appointment with GP and also ask for blood test to check my thyroid as I have had 4 episodes of overactive thyroid over the last 4 decades.
Your reply re shingles vacc has rung alarm bells DL... I had a Zostavax along with flu jab October '17.... Chest infection lasting from November through to February '18... PMR dx March '18..... It has crossed my mind if vaccination and PNR connected....
Got a shingles vaccine end of June 2018. Diagnosed 6 weeks later with PMR. I am convinced this is what did it as it was the live vaccine!Also the clinic was on strike and the Doctor gave me the shot. Never had this before as she did it under the upper arm instead of on top. My arm was so sore for days
did gp say why it was administered in that way!.. I've never heard of that! I can only imagine how sore you were afterwards... I'm convinced jab set the scene for 5 courses of abx then my PMR!
Your adrenal glands are still getting their "muscle" back, just like the rest of your body. It is felt to take up to a year even after you are entirely off pred for them to get up to speed.
I'm on loads more than that - and your day out sounds tiring to me!! I find the dip is often more time-related though - and it was the afternoon for you wasn't it? Normally the adrenals would produce a boost in the mid-afternoon and it sounds as it they are sometimes but not reliably.
Anything you do extra may require extra cortisol - driving, exercise, whatever. The synacthen test would be useful to know if they are able to function properly - just to know if you need to be more aware during this long, slow recovery period.
Hi Urtica, I am on zero Pred for the last 6 weeks or so and I didn't know what was meant when others said they had deathly fatigue whilst taking Pred as I was lucky and never experienced it. However now, like you, when I sit down. usually after 8 Oclock to watch TV I fall asleep within minutes and miss lots of what I am supposed to be watching. Thankful for re-wind. I will take on the replies to you. I already have an appointment with Doc next Monday
Good luck too. Some days I don’t even last until midday. My husband frequently looks to see if I have gone to sleep and switches off what we have been watching. I then have to remember next day where I had got to! It is strange as I don’t even know when I am going to sleep it is just like someone has switched the light off. Other days I can enjoy being “normal” and not even feel tired.
I can identify with this falling asleep syndrome. Have had PMR for over four years, and currently at two and a half mg per day.
I had hoped that this fatigue issue would go away when I got down to a low dose, but not so.
I put it down to adrenals linked to the fluctuating (for me) nature of PMR. It's not every day that I feel like falling asleep, as I do have good spells for days on end. Then PMR takes its revenge for being nice to me!
Thanks for your post. I shall try to monitor it and perhaps see if I am doing too much .
I once watched a documentary about narcolepsy. The general meetings of the group they had was basically people falling asleep and others picking up the minutes. They did find it very funny themselves. When I get the glassy eyed slack jaw nap face I am reminded of that meeting.
There is a great sketch by Victoria Wood on Narcolepsy , which is so funny but caring done documents style like that.
I remember watching with my cousins daughter just after she was diagnosed with Narcolepsy , she was in tears.... Of laughter .
She says now that it was the one thing that made her diagnosis bearable at the start.
I have to say I find her remarkable and all Narcolepsy sufferers.
Functioning day to day without fear , she has managed to hold a part time job , help run her own home , horse rides , and has had a child. With her symptoms I'd be terrified to make a cup of tea let alone make a baby.
My Neuro symptoms from side effects and the other health issues are bad enough. But potentially dropping to sleep with no warning seven times an hour , she , and other Narcolepsy sufferers don't just deserve our best wishes but a medal and a round of applause. xx
Agree. The three or four people on the documentary were laughing at the situations. Very brave to laugh for a teenager who lost control if muscles and collapsed when laughing. Her friends were great catching her. Her symptoms didn't happen when she was focussed on dancing.
I have just watched it on YouTube and laughed again. 3 minute takers in the meetings and still gaps in the minutes. Mind you....it didn't look much different from the meetings I attended over the years. People nodding off and loosing touch with the subject.
What I couldn't believe was , when we took her about ten years ago to have her Disability reassessed the stress of it meant that she kept dropping off , and even on the way into the interview fell and hit her head on a table and cut her head open.
Despite being covered in blood and dropping off three times in the assessment they cancelled it and she had to appeal!!
I do wonder at the logic of folks on some occasions.
I know , she was only 22 at the time and had already been through enough trauma in her life which had caused the original syncope and following narcolepsy in the first place.
Institutional and Bureaucratically endorsed torture is probably the most terrible thing many of us have to bear with a Chronic Illness .
The "powers that be" in all areas of Medicine and Social Care do seem to forget that it's not just the stress that we experience in the outside world that we should be avoiding but the stress they create in the consulting room as well.
I also have days when I feel pretty normal and then other days are weird. Last night I could not keep my eyes open in the evening. Hubby was fed up rewinding programme we were trying to watch. Then Murphy's Law....I was wide awake from about 1 till after 3. Tis a conspiracy I say. Down to almost 2.5 and feel my adrenals are doing not too but still have off days. What a caper this PMR is!
We don't have fancy TV here so we use FilmOn. OH watches it live in the evenings but I just can't bear the ads! So it is recorded and I watch the recording - getting up to jump the ads keeps me awake very effectively!
I have the same problem, I will be watching TV and I suddenly find the programme has finished! I record everything nowadays, the problem then is finding out when I went to sleep!
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