I am struggling tonight. I have completed an aqua aerobics class today. I told the instructor I had PMR. I don’t think she really knew what it was.
I have had the results of some of my tests. My Vitamin B12 levels are low so I’m starting the tablets for that tonight. I am also anaemic so I need to find ways of introducing iron rich foods into my diet.
I struggled to do a bit of ironing although it was very difficult. I wanted to prove I could still do it. My husband said we can ask someone else to do it.
Our house is cold as our boiler is broken. I have a heater which I’m carrying from room to room. Dressing this morning was a nightmare.
I need to find a way to get through this. I know there are charts to map the pain a diet. Perhaps someone can point me towards these ?
Thank you very much x
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Elizabethjane7861
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You have to be VERY careful with aquafit - it did for some years with unmanaged PMR but I did have very good instructors. It was up to me to know where to stop - another lady didn't do a whole class but I rarely bailed out. What I did do was not try to keep up with anyone else. Everything you do in the water takes 7x as much effort as doing the same thing on land. So I didn't use any of the aids at first - like the dumbbells or the woggles, just the resistance of my hands against the water and none of the actions too enthusiastically, I started at a low level and took a long time to build up. Eventually I did keep up with everyone else but it took some months to get there.
Thank you that is a very helpful reply. I don’t do all of the exercises. If I need to get out before the end of the class then I will. I feel a bit low mood wise a d was hoping that this would keep my motivation up
It will - just give it time. In a couple of months it will be a whole new world. Get someone to do the things you can delegate, you do things like the aquafit and other things you enjoy.
Your best bet is to take your husband’s advice and get someone else in to help. The hardest part of this, especially in the beginning is admitting that all those things you do that tell you you’ve still got it have to be put to one side, for now. Also, not many people know what PMR is and if you meet any, they often light up when they know there is someone else who knows what the Dickens you are talking about. You have a systemic condition that you and others can’t see but which affects everything. You need to try to accept this is here to stay for a while and that you need to listen to your body and do what it asks, not what your head says it ought to be doing. We all struggle with this bit.
If you have PMR then being on pred longer term is the only real option - that or living with constant pain and disability. Been there, done that - really don't recommend it!
Are you certain that tablets are enough for low vitamin B12, I also have low B12 and am having injections to increase the levels, obviously it depends on your levels.
Did you get the results of your tests? I meticulously store the results of every test I have. I have become a nutrition nerd since getting PMR. I have an App called My Net Diary, it is free, but to add in extra nutrients they do charge. I find it useful in planning menus and shopping lists, as well as seeing vitamins etc I have had that day.
I have type 2 diabetes diagnosed about 3 months after my PMR diagnosis. I have a 6 monthly review of my diabetes and always have blood tests before including kidney function , ESR and hba1c plus full blood count. I always ask my nurse to print out the results so I can keep a record of them so I can see how I am doing
This is what my husband has done. He has taken B12 tablets for a couple of years and gets tested every once in a while. Takes the tablets less fequently now. I believe injections are generally only given if the person is unable to absorb B12 from the tablets, which they'll find out after you've taken them for the three months, if there's been sufficient improvement.
Well done for doing Aquarobics . Nobody has heard of PMR and even fewer understand it, even doctors. I invested in a steamer for the things that have to be ironed like my husband’s shirts and my blouses - even fresh sheets on the bed. It’s great, I can do it seated, just set it up and point at the hangers or the bed. I can see that you are going through one of those patches when everything seems to go wrong. A boiler is an nightmare. My Rayburn does the heating, cooking and hot water. It used always to be blowing out or going wrong until I got a competent engineer who understood it. I hope your is fixed soon. As for diet it is low carb all the way for us, there are loads of recipes and plans on the Internet. I’ve just bought a low carb 12 week diet plan from the diabetes website, the recipes sound like they wouldn’t be much hardship. I am not sure what you mean by a chart to map the pain. I used to make a note in my early days of tapering - well faces showing degrees of discomfort. It helped me keep track of withdrawal symptoms or pending flares.
Just occured to me - does Sarah use the outline of a body image to map position of pain? Christian's nurses do - but it never seems relevant to me, more so for RA.
I’m sure you will feel better once your boiler is fixed and you B levels are up. All exercise classes are hard at the beginning. I bet you could struggle your way through the ironing but I have learned that lots that I used to iron doesn’t really need ironing. Maybe if you get some help you will have the energy to do something nice with your husband or just for yourself.
Well done for going to Aqua Aerobics but with PMR you will need to learn to take things easier and also to accept help when it is offered. That can be hard but in the long run you will feel better and be able to do more. I’m sure many on this forum have learned the hard way, just like myself. You have a condition which many are ignorant of and that can make it harder too. However, once your pain/inflammation is under control - with steroids - you can gently begin to take on a little more activity - little by little and by pacing yourself. I’ve had PMR for a while now so have learned to live with it - but it still reminds me occasionally. However, I would say that I have a good life, I do Aqua and a class called Fit for Life twice a week. I even managed an amazing trip to Antarctica just before COVID hit. Patience is the key. Feeling down about it all is also part of the process too but it sounds like you have a hubby who wants to support you so lean on him too. This forum will help you. It has been a godsend to me on my PMR journey.
Just a thought from another PMR sufferer! I have storage heaters which rely on you predicting when you need them on especially during shoulder seasons like now. So I got myself a heated throw. It's wonderful for keeping cosy on chilly days. I got mine from Aldi sometime ago but I guess Amazon would stock similar.
As an ex-exercise professional I would say be careful with the Aqua as the water makes you work much harder. Also when you get out make sure and get warm quickly. I have real problems if I get out of a pool or jacuzzi then get chilly. It starts everything off. Tried swimming and hot tub on holiday a few weeks ago. Muscles felt great until I got out and tried to shower and keep warm. I was completely exhausted by it and had to put the cottage heating right up to get warm again. I am very temperature and weather sensitive. Nothing like cold and damp to start my arthritis off!
Take it easy! I have a cleaner, bought a dishwasher, use a tumble dryer and don't iron
I just wanted to say that things do get better!! Right now though you need to manage your low mood. I'm sure there are things that bring a smile to your face or a measure of comfort. A source of warmth sounds like a priority and those heated blankets are great to wrap up cosy with a book. A hottie or wheat bag and a wooly blanket meanwhile. Plan little treats like things that use your five senses: good smells, textures, tastes, sounds, sights. Self care right now. Hey, I find that an audiobook helps take my mind away from overthinking too. Very best wishes.
I did water aerobics for years before being struck with PMR and have continued doing water based exercises for the last 7+ years of on-going PMR. I try to do 30 minutes in a pool at least three times a week. I no longer attend the classes as I enjoy the quiet and solitude of doing my own thing and have learned enough to develop my own workouts. During flares, or after being away from pool access for days at a time I won't use the various pool toys like dumb bells and noodles, and reduce the length of my routine, starting back at 15 minutes and gradually building back to 30 minutes. Every time a new issue pops up on me, like lumbar, neck or shoulder pain I look up water based exercises on the internet and usually find relief for these non-PMR related aches and pains.
You did well with Aquarobics. My instructor didn’t understand PMR either so be mindful and don’t keep up with the rest of the class. I injured myself and haven’t been back since. Lack of heating alone isn’t helpful. Wear plenty of layers until you get it fixed. The combination of exercise and lack of heating probably hasn’t helped - it would make me miserable not having comfortable heating. 🌺
I recall my mom ironing but everything I own is wash and wear, toss it in the dryer with a dryer sheet and wear it. Course now that I'm retired it is all shorts, t-shirts, "comfy pants" and rarely dress clothes. To each his own though, cheers!
Just one thing, you say you are anaemic. There is something called (I think, a while since I last looked it up) the anaemia of autoimmune disease where the haemaglobin is low but ferritin high. I expect your doctor checked the ferritin, but thought I'd ask just in case....
Thank you for all your replies. We are getting a new boiler on Wednesday so our house is quite cold at the moment. I have asked someone to do a bit of ironing for us. I have also invested in a heated throw. This is lovely but I keep falling asleep when using it. I have been to the local hospital to take my sister to an outpatients appointment. I was cold waiting in the car and should have gone to the coffee shop in the atrium.
What sort of throw did you get? I was looking at them last week for OH - who is permanently cold so I thought it might help me survive the level of heating he seems to want ...
Living in Italy, I won't be getting one from there - I wondered what make you chose? Is it a blanket? I saw a poncho style one which I thought was useful - you could take it for a walk
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