Help please
Posted , 17 users are following.
Hi,
I have had PMR for 2 & a half years, I am aged 52, currently on 10mg pred per day and would appreciate any comments / thoughts on the following.
1. I sometimes forget things, like when driving how to get to my destination even although I know it well or I have left keys in car or front door keys in the door outside. Anyone else come across this ?
2. I have had to give up work as I cannot concentrate and am too tired, again am I being a wimp or anyone else had to do this ?
3. I find it difficult to get a full nights sleep and often have not very nice dreams, is it just me ?
4. I try to walk 2 miles each day (on flat ground) some days I feel fine and on others this tires me and hurts. Anyone else feel like this ?
5. When I do anything that requires exertion (housework) often I get horrendously sweaty even after only a short period, is this common.
any advice anyone can give would be really appreciated as even with all the great help from my doctor and hospital consultant I still feel very confused about PMR and kind of feel either isolated or that I am just not trying hard enough.
if you have read this far thank you for doing so. George from Kirkcaldy.
0 likes, 36 replies
barbara40602 george82764
Posted
I am 55, used to work full time, and exercise 6 days a week. I have nowhere the life I used to.
1. Yes I too am more forgetful.
2. I have gone to part time temporarily. It has helped tremendously. I must rest in the afternoon.
3. I never get a full night's sleep. I don't remember any disturbing dreams though.
4. Yes I've had to give up almost all of the exercise I used to do. I can only do mild exercise now. I am missing my usual exercise terribly. I have found that Aqua classes in a warm pool around 87 degrees are very helpful.
5. I too sweat profusely over any exertion. Vacuuming will cause the sweat to literally run from my head down my neck.
PMR sounds manageable when the doctor tells you how to take the prednisone and when you read about it, but I find living with it to be a bit of a nightmare. Nothing I ever could have imagined to be experiencing in my 50s. Living for the day I get my life back. You are not alone.
george82764 barbara40602
Posted
molly1957 george82764
Posted
Hi George I have had PMR for almost 2 years though didn't start treatment till 18months ago . I am doing the dead slow reduction and I'm almost down to 4 mg going really well so far. I too had to give up work as I could not concentrate and was unable to retain any new information, unfortunately this was at a time I was redeployed to a new job , the stress was just too much. Now that I am on a lower dose my sleep has improved though I can still wake up through the night because of the sweats , I now drink caffeine free drinks and this has helped too. I pace myself every day in what ever I do this means not exerting myself when doing housework ,I've got loads of time to do it , I do a bit then rest . The only excercise I do is walking but like you i tire and feel sore .
I always feel better when coming on this site because I know it isn't just me , I've learnt more on here than from my rheumatologist.
Your doing really well George take care
best wishes Molly
george82764 molly1957
Posted
tricia_10 george82764
Posted
Hi George,
I had PMR diagnosed last February 16 but the symptoms came on about a year prior to this. I started on 20mg of Pred and fluctuated up to 30mg and now have finally tapered down to 3.5mg but have recently had a outburst which I am now back up to 5 mg.
In the beginning I wasn't able to walk at all, had to give up my job as I
couldn't get up in time and when I did I felt like a zombie. Hot and cold
sweats, loss of memory. If I did go out for a small trip, i would be worth nothing the following day so had to rest. I have spent the last year resting in the arm chair. I cannot walk into the kitchen so my husband is my full
time carer .
I can relate to your feelings as I to am going through exactly what you
are feeling.
The Pred has done a good job on my bones as I have to have a double hip replacement in a weeks time. Two years ago my hips were average for a 53 year old.
They say to go with the flow but it is very hard.
Take Care x
george82764 tricia_10
Posted
Silver49 george82764
Posted
george82764 Silver49
Posted
Thank you, it's reassuring to know my symptoms are not specific to me. Thanks again and good luck on regaining your health
Silver49 george82764
Posted
Thank you and I'm glad that you are feeling more reassured.
darlene96382 george82764
Posted
This all sounds very familiar except for the bad dreams. I'm 55 and have had PMR for almost 2 years. I am weaning to 3.5 mg of pred on the DSNS method and actually feeling pretty good at the moment. I tend to stress out easily which always makes me feel worse, so I've been trying to work on that. Praying we will all get through this!!
george82764 darlene96382
Posted
Thank you for the reassurance, good luck on your improving health
Anhaga george82764
Posted
Could relate to some of those things especially when first on pred. On the plus side, I was excused from jury duty in my early days because of a) potentially impaired judgement and b) tendency to nod off at the drop of a hat.
george82764 Anhaga
Posted
Thanks Angela 😀
george82764 Anhaga
Posted
Sorry auto typing 😡Meant Anhaga
EileenH george82764
Posted
Nos 2-5 are all very very common in PMR or when taking pred. In that you really are not alone as the other replies have shown.
I have to say - your description of No 1 bothers me a bit and it is something I haven't heard anyone say in its entirety before. Forgetful yes, not being able to remember how to get home, no. I often leave the keys in the outside of the door but haven't left the car keys behind yet!
Are you on any other medications? Statins for example?
Say hi to Fife for me - the daughter lives in Rosyth and used to work at the Victoria Hospital!
george82764 EileenH
Posted
Thanks Eileen, I went to the doctor today and she said it's due to the mix of different medications.
I'm not going daft after all 😀
EileenH george82764
Posted