My OH has been really good, generally, through this journey. Prior to my misfortune it's normally been me as the carer because he has not been well for years. Tonight, after I have struggled with weak and painful legs, due to the pred, he says "your calf muscles are looking really dissipated,, you have an exercise bike upstairs, why don't you use it to build up the muscle?". I can't be bothered to enter the discussion. Can I cry ( I don't normally)
Right now I could weep: My OH has been really good... - PMRGCAuk
Right now I could weep
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Dontwannabesick
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😡 God bless your saintlike patience. It’s your turn! X
Thank you, I know my common sense will kick in tomorrow, He means well. Good job I don't have the strength to lift the bl**dy exercise bike and crown him with it !!
He does mean well but this is such a strange lurgy to understand , and he is a man after all 😋 Tomorrow you may laugh about it but feel free to cry too 💐
Thank yiu
You go ahead and cry. Sending you a big hug. After all you've done for him............. xx
Thank you, he just doesn't realise. He has been ill for a long time.
Poor guy xx
Want to add. Thank you for the place to vent and for the friends who listen. We all manage in the end, but it's good to let off steam among friends who understand, rather than upset the well meaning innocents who don't xxx
Oh well you know I do that all the time. I had a massive row with mine the other week and blurted it all over here. It helped so much, no one judged me or Leon xx
Oh darling I bet he didn't mean it. He is just like my husband he says stuff like that all the time and wonders why I walk around all wounded. I am so sorry. I know what you are dealing with and I ache for you. Please try to be strong and look at the love he has for you. Massive hug coming your way and loads of empathy xxxxxxxxxxxxxxx
Thank you x
I'm sorry you are going through so much. Here is an article I copied from here awhile back and it helped my OH understand a little more about PMR/GCA. I don't remember who wrote it but I thank them so very much. I hope this helps you and your OH.
It's what I've gleaned from my own illness (GCA, now in remission) and other patients' experiences with GCA & PMR over the last 6 plus years. I have no medical training nor expertise - except from a patient's point of view.
I hope it will help you understand your illness a little better, and enable you to control it rather than the other way round. If I'm repeating what you already know, then I apologise, and if my explanation is not medically accurate in every detail I take responsibility, but I hope it gets the gist of the illness across.
By all means let your family, friends or work colleagues read it if you think it will help them understand your position.
There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites.
PMR and/or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illnesses can be managed.
Many of us are never sure what caused the underlying conditions of GCA and/or PMR (physical and/or mental stress are favourites though along with hereditary factors -see Are we all Vikings -healthunlocked.com/pmrgcauk... - but having them means that your immune system is not working correctly and allows certain cells associated with your blood vessels to grow out of control. That can cause inflammation within your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.
In PMR the most widely affected vessels are those in your main muscle groups - shoulders, neck, hips, sometimes knees.
In GCA it also affects the shoulders plus the larger Carotid artery that feeds your neck, head, and the torso (Aorta). If only affecting your head it's sometimes referred to as Temporal Arteritis (TA). This artery is very close to the skin, and can sometimes be seen as enlarged, plus it is where a biopsy is performed if necessary. (TAB). However, this is not the artery that can lead to blindness, that is caused by another branch of the carotid, the ophthalmic artery, which if affected can restrict blood to the optic nerve, and then partial, or total sight can be lost. If your Aorta is affected it can lead to strokes, aneurysms, coronary problems.
The only drug that controls the inflammation is Prednisolone (Corticosteroids). It does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Like most drugs it does have side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes, high blood pressure and hasten cataracts, but not everybody gets all or even the most common ones, and they can all be managed.
PMR and GCA does go into remission (except in very rare cases) but that can take a number of years, 3-4 seems to be the average, sometimes less, occasionally a lot longer. Unfortunately many doctors still insist it only last 2 years. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3 months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!
The initial high dose (PMR: 12.5-25mg, GCA: 40-80mg) which usually gives a feeling of euphoria and should relieve at least 70% of pain takes control of the built-up inflammation, however your body continues to produce proteins (cytokines) every morning, so all the time your immune system is compromised by the GCA/PMR you need to take enough Pred to ensure the inflammation doesn't build up again. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.
The usual plan is to reduce every month ( although every 2 weeks seems to be some doctors preference) but, and it's a big but, what looks achievable on paper, in real life it's very often not!
As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation, and you'll get a return of symptoms (a flare).
If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.
Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best.
See pinned post on right of page - Steroid Taper Web Application or
healthunlocked.com/pmrgcauk...’s-simple-taper
Recommended time to take Pred is early morning, with or after food. However as the cytokines that trigger the inflammation are produced daily around 4am; some people find that by taking the plain uncoated tablets around 2am or coated ones the evening before it is fully in their system by that time and it's ready to fight the inflammation.
When you collect your first prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or doctors surgery may have leaflet. You should also continue to carry card for a year after stopping steroids.
Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side. There are also local support groups listed.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.
Look up 'Spoons Theory' on web, (butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.
You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease. You have to learn to pace yourself, that means resting. Most people find that fatigue is the hardest thing to cope with.
Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, Yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscles recover, and that now takes longer.
Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.
As I said at the beginning a lot of information to take in, but if I condense it too much I can't give all the information I want to.
Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.
Make sure you read the article about spoons, it helped me considerably. Take care and I do hope this helps you. Kitty
Thank you for this, it's much appreciated
What an angel you are to post that. It’s incredibly helpful to us all. Xxx
This was amazing to read thank you so much
Me actually and can be found here -
healthunlocked.com/pmrgcauk...
Or I have it in pdf format so can email it if easier to access ( pm me with email address)
THANK YOU!!! 🥰
Thank you for this, as you can see I kept it and read it often. Now I can put your name at the bottom and know it came from you. It has helped my OH, my self and my family. Hugs to you DorsetLady.
Returned! 💙
Unfortunately, he sounds like he`s entrenched in the mode of being cared for. As Jane says, it`s your turn.
PMRproAmbassador
Of course you can cry - and shout and scream here in safety. Anyone who doesn't want to listen, needn't. And then try to collate some info for him to read to try to get through to him that an exercise bike isn't the entire answer.
To some extent I agree with Oldman - and he is probably also scared at the thought HE might have to rethink his cared-for role to some extent. He has to understand that, while PMR/GCA doen't appear to be much on the outside, it leaves us in a state akin to having permanent real flu. Would he be on the bike in the middle of an attack of flu? I think not.
"Spoons" has been mentioned - but have a look at this
healthunlocked.com/pmrgcauk......
which is a collection of articles relevant to PMR/GCA which might explain to him a bit too.
And if all else fails - try to get your head round the concept that he means well. Unfortunately, they say the road to hell is paved with good intentions!!!!
Thank you.
Oh, Bless You, l really think he was trying to be helpful but sometimes it’s the slightest remark that can upset you! I hope you had a cry & feel all the better for it?
I’ve found of late this is the place to share what’s going on, l’ve hardly told anyone else about my eye or my liver issues, it’s just not worth it!
Hope you feel better today 🌺
MrsN x
Dontwannabesick in reply to
I do, thank you x
You did the best thing came on here and vented.
We've all been there , it takes our loved ones a very long time before they understand how difficult an ' invisible' issue really is. Some of them never will , that's not because you are doing things wrong but because of who they are. PMR/ GCA really does teach us the true nature of people we thought we knew and who are friends are.
We all want to take an exercise bike to the heads of our friends and family at times , they are just lucky at those moments that we have PMR or GCA so don't have the strength to do it!
That's why this forum will be a godsend for you while you experience this illness.
It's the greatest stress relief you will find and will help you cope through the dark times , and the stupid comments.
PMR/ GCA teaches us all to become experts in patience and calm.
If we don't master them then moments like you have just had can cause us the sort of stress that will bring a flare on and no-one wants that.
I have told my family and friends in my most calm and reasonable moments exactly how it can affect me , stop me doing things I once found easy , ruin plans and affect my looks and moods.
But they still occasionally say or do things without thinking , overreact in my company or become irritable with my disease on my behalf.
All of your friends and family love you , so that is why they want to see you well again as quickly as possible and not understanding how PMR works they will all be free with the annoying ' get fit quick' comments , not because they are cruel , but because they think they are helping.
Some of them are just , and always have been morons with all the fact of incompetent stick insects but their abilities had never been tested until now.
Steroids also add to our irritation by making us quick to react to others stupidity. Over time you learn to count to ten before you react emotionally and take deep breaths.
Then you ask yourself do I feel bad/ angry/depressed / anxious because of the steroids or pain or is it for a genuine reason?
If it is a genuine gripe I count to 20 , then ask is this worth the extra stress and pain of confronting now or can I breath myself calm or vent with people who understand ?
Doesn't mean you don't sometimes have to explain to them that they had upset you by a comment and explain why , but you do it when you are both in a reasonable space and the message gets through . And that hopefully stops them causing you the same stress again , or they realise alot quicker what they have said or done and apologise for it before it makes you blood boil.
Starting these chats with, " I am not criticizing but ..... upset / stressed me/ made me tired earlier because...... and I just wanted you know because I know you don't want to make me feel worse , if you could try not to do that again it will really help me." often stops them reacting badly because they feel guilty for making you feel worse.
If there can be a silver lining in this you know you will have learnt to deal with stress so well that when you recover Tom Cruise , as Ethan Hawke , will think you worthy of a side kick role in Mission Impossible , even an unexploded bomb in a nunnery full of puppies won't make you turn a hair !!
Gentle Hugs and good vibes . Bee xx
BEE. The voice of reason as always. Thank you.
Definitely cry! Don't bottle it up.
Not too many men are here at the site, so someone needs to speak from that prospective. I do understand how you feel and it is OK to cry ( a little ). But perhaps your OH did not phrase it in the best way, but I am sure he meant it well. I have lived with PMR for 3+ years and the exercise, especially biking, is my savior. Not only it helps with pain, but it also helps to preserve muscle mass while on high doses of pred and also helps in making them stronger after your dose gets below 7-8mg. Our biggest muscles are in our legs and keeping them in good shape helps us to stay mobile and independent. Stationary bike has predictable motion and is safe to do, start slow and easy. Good luck to you.
It is hard to explain how we are feeling,we may look well but it is not just the physical symptoms ,the pred can affect us mentally,l can get very agitated when confronted with anything that upsets me,or if l feel that a task l am being asked to do is too much for me.lt might not affect everyone that way but l find l am much happier pacing myself ,but of course you have been caring for your husband and he now has to realise that you need some TLC yourself.l hope that you will be able to rest more ,l know it must be very difficult to do that if your husband needs your help,l do hope that the new year brings you less stress and that your OH will come to understand your limitations xx.
You are not going to like this!
But OH is right!!........Gentle regular exercise at your pace is good for your muscle condition. We are not talking racing speed, but gentle circular motion indoors for a couple of minutes.
I’ve had PMR 3&1/2 years with great and increasing difficulty walking. Ending with osteoarthritis of hips...needing 2 hip replacements ....and no walking for a year! Just starting physio at op + 11 weeks and she says muscle fibres have separated causing weak muscles....must relearn to walk.....little and often every day....till they are stronger then walk normal speed....my target for next 6 months.
So, do not stop gentle exercise because of fatigue .....in the long term it may make more problems.
Happy, healthy new year.
Occurs to me - maybe one of the "just pedals" exercise things might be a better start???? One lady got herself one to use in the winter when it wasn't nice enough to go out. She sat and used it a lot because she could sit on a reasonably comfortable chair and use it. I couldn't use an exercise bike - my back just screamed and the physio said no!
probablyinteractive.com/bes...
Good idea - doubles as an arm exerciser too...
Yeah! Good idea.
I try to be strong but sometimes it is ok to cry, and we need to. This hurts me and just to look at us, no one knows what we are feeling. I do exercise and do what I can. But it is hard and no one understands how weak and exhausted we feel. I have hit the gym all my life. One of the hardest things for me to accept is regardless of my lifestyle, PMR, was not impressed.
Of course you can cry. Strikes me that you’re not the sort of person to make a habit of it. I hope you feel more positive and upbeat again soon. We all know how hard it can be. Best wishes.
I don't know if this article was cited above, but it's a study of people with PMR which actually asked them how they felt. Could be enlightening:
eprints.whiterose.ac.uk/852...
Thanks Heron. Interesting that they had more men than women out of the 22. I notice they say that PMR is not that well understood in Primary Care, spot on!
Hi, it's me replying to my own post now (does that count as talking to myself I wonder?). Thank you all for your support and much valued advice. My legs are really tired and stiff at the moment, I know I overdid Christmas, and yesterday I made a 70 mile round trip to see my foster daughter. Traffic was bad and the outward journey took me nearly 2 hours and involved lots of stop start and gear changes! I do walk for approximately 30 minutes every day. Before GCA I did two 3 mile walks each day. When my legs recover a little I will try the bike but without any pedal resistance. Thanks once again to you all.
I think the secret is to do what you can, but do not push yourself, don't try to do what you could before, and don't be competitive with yourself. Your task right now is to care for yourself so you can heal, just like any other ailment. Best wishes for a healthier new year!
I totally understand how you are feeling! Combine sore muscles and pred side effects like mood swings and the potential of depression, with well meaning, but poorly communicated suggestions from your OH, and it’s a recipe for hurt feelings and frustration. No wonder you want to cry (which btw, I hope you did to release all those built up emotions).
In the early months, before I was diagnosed, my (very fit), new husband blurted our during a conflict “You are just making excuses” after he suggested I go to the gym or the pool, to which I responded I was too sore. That flattened me and I was both furious and so very hurt. It took awhile to work through this hurtful comment. He explained that he was frightened for me and desperate to have me feel better, suggesting physical activity, something that has helped him and that he is passionate about.
Later, when I was diagnosed with PMR, and we both learned about the condition, he was mortified and very apologetic for questioning my abilities and motivation. I shared how devastating it was to be not believed, especially when I felt so ill and was so afraid not knowing what was going on with my body.
Now it is a balancing act with PMR and exercise. Do too much and pay for it later, do too little and risk lessening flexibility and muscle strength. My knees are also working against me and limit my ability to walk more than 10 minutes or so, unless I’ve had a steroid injection in my right knee.
He still encourages me, in a more sensitive way, and I recognize that he is without this golf and tennis partner now that we’re both retired, and he understands I miss dancing and the sex we used to enjoy. Now we try and focus on what we can do together (ping pong on our dining table, see a show, driving and exploring our new community, slow dances in the living room, and modified sexual activity). He has also embraced the role of caregiver which is new to him, as is my new role as a chronically ill person). Through it all our mantra is “this is temporary” which gives us continued hope.
I truly wish you can work through your OH’s comment, even if it feels vulnerable to go back and discuss the matter. Probably better than letting it fester, and not addressing it. You are experiencing loss of your former life and activities, and adjustments need to be made.
Know how you feel my OH bought me an exercise bike as a surprise present last year. It lives in the junk room !!
Cry ,shout ,what ever you need ,I have been a carer all of my life .From childhood to now .Mother for 33years ,mother in law .father in law and now husband .It becomes expected of y o u .You expect it from yourself .I was taught tears are a sign of weakness very early on in life .Well they are NOT they are a release .they are an entitlement they are human .Cry if you want to .Here in this place I have learned to think of me and its a strange experience .Take care of YOU as well as others .You are ill and you need to accept that . I couldnt get on an exercise bike by the way but have you thought of a slow swim .I have been doing that and the water helps to take my weight .Also walking in the water is good for legs .In the water not on it lol I am not that good yet ! If you can it might help .
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