Women v. men

Eileen, from your post you mentioned that for you pred wasn't noticeably effective against fatigue symptoms, which is very different from what I have experienced, fatigue being one of the primary symptoms for me when my dosage was just a smidgeon lower than where it perhaps should have been.

Does an increase in pred dosage not improve your fatigue level at all?

Would a drop in your pred dosage bring on "skeletal" symptoms but not worsen the fatigue at all?

From my own pmr journey I have learned that I don't have a high energy level all of the time, so I must try to be active whenever I can, but also that pred increases the "time windows" within which I might motivate myself to be physically active.

I am tapered down very low these days, so am perhaps losing sight of the experience of where I was one year ago and two years ago.

One difference that I perceive between women and men's pmr experience is the response to pred, with women perhaps much more likely to experience the weight gain symptoms at a lower dosage level than do men.  This perception is biased though, as I myself only ever experienced weight loss throughout my pmr journey.

So true.  I've found it really odd that since pmr my husband seems to share household chores less and less.  I'd have thought he'd want to help more.  I'm assuming pred has made me so apparently better he thinks it's okay to slack off. 

I know.....thing is that I don't want to turn into a constant

whiner about some physical ailment..  I get a little put out

when he doesn't seem to see the things that need to be done

and I have to ask.

Did I say it didn't improve MY fatigue problems? I usually say it doesn't do anything about the cause of the fatigue - as it doesn't. It doesn't (as far as we know) have any direct effect on the actual autoimmune process that causes all the symptoms, particulalry the fatigue. Once I was on pred and things were no longer such an effort then, yes, I wasn't so TIRED - but that isn't always the same as the FATIGUE (I suppose I'm using a medical difference and one I'm aware of at least). Patients who are on higher doses of pred often get the "mania" side effect, becoming the Duracell bunny - and many doctors will tell you that the pred will give you more energy. Not always. My fatigue has improved slowly over months, even years, and was pretty much gone last summer when I was on 5mg. In fact, I have a suspicion it had gone into remission, or near enough. But it came back...

 

Faye and Ahaga - Yes, mine also does less and less and there will be something there he doesn't even see! The toilet cubicle in the campervan was covered in pine needles that somehow get through the roof light even though it is firmly shut - I was sweeping them up yesterday and he wanted to know what I was doing. Or the kitchen worksurface is swimming in water - "But i just wiped it..."  

Not as bad as getting off the loo!  I was visiting friends once and had to call for help - most embarrassing!😒. My husband got used to it, said he was looking into finding a hoist of some kind.😏  Another day he said "I didn't study all those yeas just to become a toilet assistant"!!!!!

Yes, especially from the lower ones....I knew that everyone here would draw their own conclusions and comparisons!

Also about 20 years ago I was diagnosed with Fibromyalgia. i went from doc to doc until I got a diagnosis. he was an amazing doc who I worked with for a few years and I learned to control it without a flare-up for about 15 years. I kept repeating "I will not become my diagnosis", and I learned to love exercise and stretching. Now I'm hit with this, and I don't know if I can do the same thing because I really hurt a lot. Waited with a group of friends for a table in a restaurant on Sat. morning, and could hardly walk yesterday, and again today, but I'm going to give it all I've got. I don't know if I have as much at age 79 as I did at 59. LOL

 

I hope that given time you will get back to your programme. I have just gone back to swimming after nearly a year and felt none the worse for a leisurely non stop 30 minute swim. I plan to increase my exercise but sensibly. I can also do far more than I could do when I was diagnosed and treated towards the end of May last year. In fact on looking back I can now plan more and be able to achieve more. It has just gradually got better but I can recall exactly what you have just said about hardly being able to walk. It gets better but I did pace myself and I think that is very important as if not I suspect it will take longer. I think it is good to meet friends and have a social life but perhaps you can work out places to meet that don't require queueing or too much walking. I looked for ways round PMR and it's possible not to become the diagnosis. It just takes more planning and understanding friends. 

I so much appreciate your response. I also think that some see the glass as half full, and some see it as half empty.  Perhaps it's in our DNA. Walking is not for me. I have bone spurs on the back of each heel that aren't hurting as much (thank you pred), but I haven't been able to walk for years, but I did my exercise bike faithfully, swam, did some weights, some stretches. I focus on strength, flexibility and stamina. That's before my diagnosis. Then I was a lump for 5 months starting around Thanksgiving and got progressively worse, and now I have to start moving forward.  Again at age 79. LOL.  I tried it all. PT, ortho doc, my physician, the ER, quick care.  I just couldn't get a diagnosis. When I did I was so grateful for the very drug that I heard so much negative stuff about. The first day that I took it I was able to sleep in my own bed again. I always say that life gives us the divine nudge, if we don't pay attention we get the divine 2" x 4". If we still don't listen we get the divine sledge hammer. So this was the sledge hammer. Right over the head. I just try to wake up every day grateful for another opportunity to figure out this life. So getting a diagnosis was a gift, and the pred was also. Don't get me wrong, I don't like taking it, but I'm doing what I must do, and focusing on the parts that work for me. I focus on what I can do, what works, and I let go of what I cannot do, and just try something else. I will never allow the pain to limit me, and I refuse to go into fear. For a week i sat in total fear. I was crying, I was a basket case, I was dependent, and then I said NO! Each day I added another activity, and I'm not pain free, but I am a lot happier. The Universe teaces me something new every day.

I am the same as you with both "problems"  it is a real struggle dealing with pain from both....I am like you today can hardly walk, although I didn`t do much at all yesterday....don`t mind paying a price for doing things....but think that`s what gets to me, when doing more or less nothing is painful....Even on steroids I have a very bad backache all the time....we have to keep positive though....Good luck

It sounds like you have had to adapt your lifestyle for a long time  and bang along comes something else. Life is a challenge  and my life has been challenging from an early age. At each stage I have had to adapt my life accordingly and every time I have found lovely people around me. Maintaining a sense of humour helps though sometimes that can be difficult. My moments I keep to myself which I think a lot of people do. I was in town recently and met a friend by chance. We went for a coffee and had such a laugh as well as talking about some serious issues. We could easily have said our pleasantries and gone on our way but my motto is....seize the moment. I have taken up different hobbies and love learning something new. PMR has closed some doors temporarily but opened some new ones. Somebody on this forum suggested Zentangle and I borrowed a book from the local library, bought some paper and pencils from a shop which sells these items cheaply and find it very therapeutic. I am not artistic though my relatives are. It is something that can be done at odd times and does not cause pain.

Has anyone investigated the backache? I had severe backache and couldn't walk for more than a few minutes without excruciating pain. It was eventually identified as being myofascial pain syndrome which is often found alongside PMR and produces some effects that are very similar. It responds a bit to higher dose pred but tends to return as the dose is reduced - but can be well managed by more targetted treatments such as steroid injections and manual mobilisation, by  a physiotherapist or sports/therapeutic massage therapist.

There are other reasons for bad backache - which can also be helped by the appropriate therapy.

Well yeah. For some of us life is full of challenges. Perhaps for all of us. But if you start early enough (like as a child), you get a taste of it all, and then you can just marvel at what came your way, what's coming next and try to figure it all out. I've had my share, but then I began to realize that it was just a matter of putting one foot in front of the other, and just to keep on going.  I learned to be careful about all of my expectations, to realize that even a really crappy outcome came from a choice that I made at some point, even if I was asleep when I made it. Like getting a not great husband the first time. Well guess who chose him. I did hugely better the second time. I was just a slow learner. A sense of humor helps enormously. I try to separate my needs from my wants..now I can just look at a picture and enjoy it, I don't need to own it.  I keep my life as simple as possible, and I play as much as I can. I play with plants in the dirt, fabrics, my sewing, I draw, paint, play with the dog, with my husband, the kids, the grandkids, and great grandkids. If one doesn't like me momentarily...oh well. Life is way to short to worry about the small stuff. We're really here to be the best that we can be, and to learn to really love ourselves, and then it just flows outward. Those lovely people that you spoke of are just another one of life's blessings, and I'm very grateful for all of the lovelies in my life. Not sure what Zentangle is, but anything Zen connected must be good, so I'll check it out. I'm not really artistic, but I play with all sorts of things, and find a pleasing result on occasion.

You seem to be a spiritual person.   Your mantra seems

to be like mine......

BLOOM WHERE GOD PLANTS YOU......

I do seem to be a bit on the Spiritual side, but mostly just try to be as positive as possible because the world can be a challenging place to live. Interesting though that I have been neglecting doing anything about my concerns of my eyes, but just today after a sort of rough morning, and responding to the person who is concerned about glaucoma I called my retina specialist, and they moved my June appt, to the day after tomorrow. I've had other challenges and just sort of left this detail hanging, so just one day on this site, and I did something important for myself that I've been ignoring because I didn't want to deal with it.  I might not have done that if I hadn't been on this site just as of yesterday. So thanks to everyone who has corresponded with me. I just didn't want to deal with it, but now I did.  I'm sitting looking out the window at the snow covered ground. The snow stopped, and it's very pretty. I have a huge lily garden out back, and all of the new lily leaves are above the snow looking very determined to bloom where they are planted also.  We had some large trees removed this week, so it will be very sunny out there now and the garden should do much better.

Silver49,I belong to a community choir where we wear nametags hung on cords around our necks and the other day I redesigned mine with a Zentangle background!

That sounds a bit different, Anhaga. Was it you who introduced me to Zentangle? I am enjoying it and it's good to try something new. 

Sounds very pretty. We had 22 large trees removed from our garden and the difference in the light is amazing. Everything in the garden is growing better and I now have more rhubarb than I can use whereas previously I couldn't get it to grow at all. I kept buying more crowns and friends gave me some. Now they have all taken off. We had some snow flurries today and the snow gates are closed but not unusual for April.

It might have been, I did mention it a few months ago.  During Lent I set myself a number of (pleasant) daily tasks and one of them was to do a Zentangle picture so now I have lots of little pictures in my sketchbook.  I don't know why it is so relaxing, but I just love doing it.

I think the answer is you can do the same thing, simply because you must. Realistically you may not be able to do it as well, but you can do it.

seems to me you are going to be quite an asset to this forum - welcome!!!

It just seems like a real gift to have this here. Thanks so much. It's helped me already.  Great suggestions, and an opportunity to speak out after something really tough has come into my life.  I've had other challenges, but basically have been healthy. So I had the stamina to meet my challenges, and this one is different. It just came about around the holidays, and I was sore and went to physical therapy, and didn't start to get better like I typically do. Then for 5 months I tried everything I knew to do.  I woke up one day and I literally could not walk.  I was terrified. So it was a real shocker. I'm a strong person, and I was reduced to tears, many times, and it was a tough road back. I got little support from my doctor, and the medical profession all but turned their back on me. I'm well connected with the people who have cared for me over the years, and everything went wrong. I was in the ER for 5 1/2 hour, and never saw a doctor. So many mistakes, and even after my diagnosis which came about by accident I feel that my doctor has let me down. I thought long and hard today about whether there is a path back with her. I really like her, but it didn't work for me when I needed her.  It's been such a challenge, and I don't know what I would have done without the support of my husband. So this is a lifeline for me. So thanks to all of you. 

I understand. I hate not being able to do the things I didn't even think about a few years ago...

Learn how to run 5km? no problem

Do your first triathlon? no problem

Do more triathlons? no problem

Get PMR - big problem!

Well I had been taking weaving lessons for a year, and I got two great looms, and one day I could not do the stairs to get me to my looms. My instructor's studio is a second floor studio. That ended. Then my exercise program went, and I could not cut fabric. I just had received some new patterns, and got fabric, and I couldn't cut. I had trouble holding a book to read. I usually donate about 100 plants for the garden club plant sale. Couldn't dig, or even walk along with the gals to tell them where to dig, so that ended this year.  This week we're building birdhouses, so I'll go and try that. So the things that I loved began to fall away, and mostly they have not come back. So I joined a writer's group, and got accepted in. I can still use my computer.  So I'm writing poetry.  I'm starting my Little Free Library (I can get from my house to the barn and to my little chicken cooplike library, and I'm building a gnome village for the kids who come for books (with my husband's help). These are close to the house, and all on ground level, and now I'm able to do stairs again.  I can't weave, but I can look at my materials and plan, and I can sit and pedal my stationary bike. I no longer do 30 min. and 4.5 miles, but I can do 5 min. and 1/2 mile.  Yeahhhhh.  I can now hold a book (thank you pred) so I can read again. I know beyond a reasonable doubt that most TV is crap. I watched it for a month, and almost went insane. Well maybe I actually did go insane, I'm building a gnome village. Twigs are cool. So life goes on in some fashion. I cry less.  PMR - big problem.

I love your spirit and I love your tenacity.  Hopefully pred will give

you back some of your life.   I'm afraid that with the onset of

PMR some things change for all of us......I'm not crafty but

totally admire those who are.   I've praised your writing before

and hope you find some joy in your writing class.

I do love to read and totally agree that TV is largely crap.

 

another thought.....no you're not insane for building

gnome village.  you are one of the creative people that

humanity so badly needs.    Nice to meet you, Elizabeth

It is difficult to accept not managing to do all that you did before PMR but it'll get better. I'm nearly a year on and what a difference that has made. I have a lot going on at the moment but this time last year I would have been hard pushed to get through the day even with rests and doing the minimum. I think I have a more laid back attitude than I had prior to PMR. If it doesn't happen today then it may not happen tomorrow but if it doesn't hurt anyone then it doesn't matter. I walked round our garden last night taking joy in looking at the flowers and all the Spring colours. I'm looking out the window now at the greenery coming on to the trees and a beautiful tall sunny yellow shrub. This gives me great pleasure and I feel so fortunate. The robins have been scurrying over the grass, the blackbirds are chasing each other and I await the arrival of my grandchildren today. Life is good. 

I'm surprised you lasted as much as a month on daytime TV.    Not that evening TV is any better. The TV I watch is sport - any wintersport, rugby, NO soccer, tennis. Summer is worst but I haven't been driven to watching snooker again yet ...

I love tennis.   Always look forward to the slams.  My hubby

thinks I'm nuts.....maybe right ...but I stay awake at night

to get live matches from Australia when that slam is in

progress.....

If there is anything positive about dealing with PMR is that

maybe it forces us to slow down and actually smell the

roses....enjoy grandchildren....they grow up so fast.

I wasn't able to do that thing yesterday. Try me again.

I'm a political junkie, and I will not mention one word on here, but it keeps me occupied.

I'm doing it in reverse. I'm letting go a bit with the kids and grands. I'm taking more me time.

Can relate Elizabeth.  I was trying to become an artist, painting. With PMR (not being able to lift things as we all know about) and Prednisone affecting my brain, I just couldn't and still can't do art. I have no creativity desires, even looking at art I say to myself, it's the same old thing. I'm enjoying abstract a bit more. Funny how this is happening. In doing all my research I ran into a statement...do what's in your heart.  So, I really thought, well what's IN my heart right now?!?!   Actually healing is...BOTH physically and mentally.  I'm learning so much now mentally, so must so, I've often (well, maybe not too often) thanked or understand my PMR is teaching me about joy. Ugh, hate admitting that, but it's keeping me from going back to less joyous ways of being. I'm learning to open my heart, finally found some meditations I can relate to. Though I'm still struggling with things, my next thing to try to get over (see I'm not a writer, can't think of words, so the word "thing" has to do) is learning to enjoy my foods.  I miss gooey cheese, pasta,  breads, wine... But I sure feel better without them. But it's a struggle.

I talked with my 89 year old father yesterday, he has done some real bad things which contributed to my PMR, and he told me something that I started to get stressed over again, but I'm really, really trying to disengaged with him and ha...forgive him??? I need to realize, he's just a man who makes really bad decisions and I can't control him, it's just disappointing, he doesn't understand real love.

As for tv, I love tv. But lately I'm sick of a lot of the shows so I went to the science channel and found some really awesome mind blowing educational things! 

Glad you don't speak your politics here, some people did a while back and I couldn't bite my tongue! Hee, Hee, adds to stress. 

I took up knitting - it was one thing I could actually do without pain....but here's the rub - I HATE home made knitted things... lol

I give them all away and use only beautiful yarn. I've turned into a real yarn snob. lol

 

Isn't it funny - I had given up knitting because it hurt my shoulders too much. I haven't tried since I went onto pred - but I haven't a clue how to follow the patterns I can get here. It could be in Chinese for all I know! 

I agree that it is a positive. Grandchildren have just left and OH is now snoozing on the sofa. The house is very quiet and empty looking but there are some lovely wee drawings in the kitchen. We'll be visiting them next week in their new home. I did indeed enjoy their visit. Now relaxing. I'll tackle the housework later/ tomorrow.

I'm enjoying knitting again and hand knitting is making a comeback. I, too, like to knit with nice yarn and have found a company which sells alpaca wool and silk.

Perhaps you could download patterns from the Internet.

I've never been able to knit.  You know that irritated feeling you get when trying to undo a knot that just won't untie?  That is what holding onto knitting needles does to me.  Tried when I was a child and again as an adult.  But I like to embroider and have also done needlepoint, aka tapestry.  They aren't finished and may never be, but I've made six seat covers for dining room chairs using William Morris designs.  Maybe now that the light is better I should finish the last picture - it's a raven, made of several shades of black.  If not now, probably never.  Thanks for the nudge!

you should take a look at Ravelry...

I don't crochet. I *can* but I really dislike it for some reason - it just doesn't feel comfortable.

I used to cross stitch a lot, and also sew when the mood strikes.. dabbled in patchwork for a while.

But knitting is easy, I don't have to think - except to read patterns etc

I'm pretty good at 'unknitting' too lol

 

I know the theory of crochet but I don't enjoy it either. Patchwork is definitely not me, I did try it. Made my own clothes until I went ti Uni and not having someone to fit stuff was a pain. Made clothes for the girls though. 

I was pretty good at knitting - particularly at Aran patterns. And smocking. But only royal babies wear that nowadays 

Does anyone else think it's funny that the women v men thread has developed into a knitting discussion.

#Just saying. ;-)

I know men who knit - don't you? 

I do and they do the most wonderful knitting. They are also fabulous cooks. Now where did I go wrong? 😳 Mine will cook if I drop hints like leaving notes in large print in every room.

 

My wife knits but finds it hard to read patterns. She always asks me to read them and explain what to do. I can read them easily but can't knit. I have tried but my sausage fingers pull the thread too tight and after a couple of rows I can't seem to get the needles through the next stitch. I'm getting back to my crafty thing which is stained glass. I'm doing a couple of practice pieces, some wall lamps and a small window for the outside loo, before I embark on a lamp for a friends wedding present.

Fishermen always knitted - made their own guernseys and Arans.

Mine can't cook - he used to manage to put a steak pie in the oven and even he can fry chips. Bacon or sausages under the gas grill in the UK - too complicated here. He's demanding I leave him a frozen lasagne for when I'm in Canada and asking what else I can leave for him 

Stained glass eh? Sounds fiddly...

It is fiddly but I find the designing more difficult. I'm watching loads of you tube videos to try to learn how to draw, mostly geometric stuff and Celtic knots. Isn't the inter web a wonderful thing.

One of the librarians in the system where I worked (at the time he was managing the E-branch, young dad with wife and two children) liked to knit.  He was instrumental in yarn-bombing some trees near the place where our new central library was going to be built as a publicity stunt.  

Tastyron, I always wanted to do stained glass.  Did in fact take a course, but realized I wasn't prepared to put up with the little splinters of glass that would be an inevitable component of my household detritus if I really got into it.  My avatar on HealthUnlocked is the project I completed in the course, a blue and yellow star.

Tastyron, a suggestion for us beginners in stained glass class was to look at books of quilt patterns.There is one called something like 1000 quilt patterns.

Quilt patters are nice but a lot of them have very difficult inside angles which really needs a band saw, unless one is a bit of a wiz. Not me I'm afraid. 

I do like quilting but my wife who is the seemstress in the house doesn't. I've got ideas for a more modern take on it but unfortunately she shows no interest in having a go. 

I saw an idea for a great quilt - using panels cut from the fronts of favourite t-shirts that were impossible to throw away.  

The stained glass was just cut by scoring with a special tool and then snapping the excess off.  Hard to do curves (my own designed project is all straight lines although we did do curves for the practice projects).  I am sure I could have mastered it better but my circumstances just didn't lend themselves to continuing.

I am deeply disappointed Ron.... lol

I seem to have that effect.  ;-)