Feel like giving up

I'm really struggling..plus reading all these posts from others who are also struggling...makes me even more sad. I wish i was strong enough to help myself and others.

I don't think I'm strong enough to outlive this battle....I'm so sad :(

I'm in pain. I pushed myself down to 4.5 mg since 40mg in Feb, because of all the side effects. Going bald. I have incontenince issues .... I leak after going to the bathroom ( i know...tmi). I sweat like an animal whose worked all day. I can't sleep.

I'm always thinking about food..yet so far..have held myself back.

I was out of work (not due to PMR for many months ) I've found a new job (thank g-d), yet I'ts miserable ( also not due to PMR)..only six weeks in. So worried they will let me go, before I've really gotten started. I've been working round the clock to make it work...don't know how much longer I can hang in.

I am single. I am alone, lonely and so tired.

You are all so strong.....how do you do it??

I just dont know how much more I can take

52 Replies

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  • You are overwhelmed and that is understandable. Even those of us fortunate enough to have companionship often feel the terrible loneliness of this disease. I have found my greatest solace in nature. Even a short walk outdoors can help. Better still is taking time to just sit and contemplate the natural world, whether a single flower, a landscape, or finding companionship with a pet. We each have to find our own way. For me it might be a chance to see a wonderful sunset, for someone else listening to music, and so on.

    I'm not strong. I've been lucky. I have had terrible times when I've thought I really wanted to die, when I felt wrapped in darkness. But let me tell a little story which shows how so much depends on how we see things. I was deep in depression and imagined that behind me was this gaping black chasm waiting to swallow me. For some reason I decided to draw a picture of this image. So, black ink drawing pen, I sketch a seated woman, then start to fill in the black space behind her. Then I realize I've drawn the trunk of a great tree. And everything changes. Things haven't always been perfect since then, but instead of a black emptiness there is a tree.

    You are strong, you have just forgotten, illness does that to us. But you will find yourself again, you will find the little treasures to light the darkness until day comes again.

  • Inspiring! We all fall down, but we get up! I listen to Gospel music, exercise, pet my old, blind dog, play with my grandchildren, walk in nature, thank G-d for my blessings!

  • I think many of us post when we think we have something to offer. A suggestion, a strategy, something which has worked for us. Of course this is often out of context, we aren't filling in the background, which was often a terrible time, but nevertheless when we learned the new thing, the thing which sustains us and which we now share. So we sound "strong" but we are only strong as a flexible sapling is strong. We've bent before the wind and thought that all was lost.

  • Dear Bonig,

    First off i am very sorry that you are feeling so low.

    PMR is not for the faint of heart.

    Now, you may not be aware, but prednisone is a very powerful drug and one

    potential group of side effects is depression and mood swings, etc.

    Please return to your physician as soon as possible and let him/her know just how

    bad you are feeling so that you can get the treatment you need.

    Most of us feel the struggle, don't think otherwise. It is just one day at a time for me, that's for sure.

    You have an awful lot on your plate, going from 40 to 4.5 in such a short time and juggling

    with a new job. Be kind to yourself, take a bit of time each day to do something nice for your

    self. And remember you are not alone. I will send prayers your way for a brighter day

    tomorrow, and tomorrow after that!

    Blessings,

    Dorothy

  • Hello Bonnig

    Well HeronNS has offered a wonderful response - and as suggested 'nature' can be a great healer and 'companion'.

    I was thinking at times 'we' on the forum might sound like a 'miserable lot' but there are also I'm sure a lot of people who just read this forum and/or who are getting on OK with their medication etc and 'progressing' through their version of PMR reasonably well - so less likely to post. But inevitably almost everyone will have some higher or lower points on their 'journey' although horrid 'rock bottoms' are no fun - that is for sure. It must be very stressful feeling so unwell when you have to cope with a new job and trying to make an impression - but you must also try to pace yourself a little or you may suffer from stress in many interrelated ways which would be counterproductive in the longer run.

    I don't know if there are any support groups anywhere near you but being able to get some support might really help - just being able to go 'blah' occasionally can be a huge relief - especially if someone is listening ! It is 'good' in the meantime however that you have expressed your feelings here because there is a BIG crowd of us now directing some positive energy your way (however you might interpret that) - but the main thing is we understand and share many of your frustrations.

    Perhaps it might be worth reconsidering your Pred dose though regardless of the hair loss as pain and discomfort might be the last straw and very hard to get on top of. But I am sure the 'experts' here will have some helpful suggestions regarding side effects - and in the meantime hang in there - things can and will improve for you I'm sure. And perhaps forgive your food cravings now and again and give yourself a well-deserved treat !!!

    Best wishes

    Rimmy

  • Give yourself a break. Starting a new job is never good even if you like the job. Don't overwork as you will get tired and it is a vicious circle. To me (no expert) it sounds like you have reduced too quickly. If I were you I would at least go up to 10 mg and ring a nice friend and go for a meal and vent all your frustrations. I know before I was on pred I went out for coffee with a good friend and felt so much better.

    Do not give up. You can't. PMR sucks but everyone is here for you and you will get some more great tips.

  • Straight out of your heart, Bonnig, and straight into ours - how often most of us have felt the same desperate sense of isolation and futility at the never-ending juggling of pills and pacing, fatigue and frustration.

    Your word 'pushed' is the giveaway, PMR is not open to pushing of any sort and will react fiercely - the most important word is 'pacing' which may seem boring but is key to finding the right level of pred/physical activity/mental stability. How to translate this into real life is the hard bit, especially when you're also finding your way in a new job. Do they know about your PMR? It often helps to be completely frank about it, for a long time I didn't tell anyone (it seemed like an admission of failure after being so active and 'on the go') but it's cathartic to tell those who matter.. no-one really understands what it feels like to deal with PMR but it helps YOU to say there is something wrong and allows THEM to empathise and make allowances.

    Many of us have been strong in the past dealing with family and life stresses such as caring for others in difficult circumstances, but now it's ourselves we're caring for our strength can wax and wane with frightening speed which leaves us bewildered and scared. Which way to turn? The most basic answer is to find the right dose of pred to deal with the inflammation, which will relieve your pain.. those side effects of hair loss, food cravings, incontinence do get less as you get back on track.

    You're showing strength by asking for help from this community and you don't say whether you have ongoing medical advice but that is your next step towards regaining control not only of the symptoms but of your own sense of empowerment. Please keep us updated, and the very best of luck.

  • So sorry you feel so helpless.

    I think we have all felt some of what you are going through. I can only say as a start, please do make a GP appt and tell him/her all of this, perhaps he will be able to refer you to a counsellor who may be able to help you.

    Best wishes.

  • Hi so sorry you feel so low and so pleased that you have been able to vent your unhappiness, fears, frustration on here. As others have suggested do see also if there is a local group near you. What area do you live in? Folk that would totally understand the battle that you are going through. Also your drop of 40 to 4 mg over such a short period of time will have had repercussions:- more pain, mood problems maybe. Add to that your new job and you working overtime to settle in :- no wonder you are experiencing a rocky road.

    I understand your worries re your hair and problems with leakage, some of us have the same problems- I once said that I felt I had shares in Tena Lady!!

    But equally you need to get your dosage right first so that at least all your pain and stiffness is being dealt with. Maybe going back up to say 7.5 or 10 mg may solve that for you and then you can slowly come down using the DSNS plan, coming down 1 mg or half mg a month so you feel you're more in control. This may stabilise your mood too but if you feel really down perhaps you need to go and just discuss this with your GP. Again many have had to do this. With regard to weight - do try a low carb diet- again at least here you can feel you are doing something to help.

    I can appreciate your worries re your job but really try to take one day at a time and be good to yourself- you can't get it right all at once.

    Mostly as others have said have some "me" time where you can spoil yourself or "take time out" to relax even if with a good light book or walk. I think you're right - friends and family often "don't get this" but you do need some sort of support network be it a few friends or a PMRGCA group nearby and on here of course.

    You can't tackle all these things at once so I would start off with your dose of pred and slowly work through the others as and when.

    I would lastly add that we not all strong as you commented - we all have our ups and downs and some more than others. A lot of folk will understand exactly where you're coming from.

    Will be thinking and praying for you that things will slowly improve. Best wishes Jackie xx

  • You are not alone in feeling like this, Many days I am the same....I find when I get another health problem like you have....it seems to tip us over the edge.....but....somehow we find the strength to battle on....don`t ask me how, today is ok.....tomorrow is another day......

    Some people and I might ask for myself, are taking Amiltriptyline.(spelling)...this helps with pain and help with sleep...and mood!.....

    Post on here when you are low.....as many people say on here.....no-one really understands how we feel, I have had many crass ignorant remarks made to me.....it`s a good job I don`t have much strength!........but I do find that Pred has made me more direct!.....or is it age??

    You have lowered pretty quick so maybe that is why you are feeling like you are as well, or it certainly may not have helped.

    Wish I had the answers for this horrible battle we have.......I do find music helps me take my mind off things just a bit.....whatever it is....do it.....for yourself.......

  • Talk about it to us. I think we have all been in the same place at one time or another and will probably return to it from time to time. Having an incurable disease is soul destroying. I am very lucky. I do not have to cope with this alone, having a wonderful circles for friends and family. I am no stronger than you, I just have support. I can't magic up friends and family for you, but cyber friends can be nearly as good. Try us!

  • Look at my screen name! I have had PMR for 9 years and know how lonely it is to have this disease. I have a husband but he was always as understanding as a brick wall, until recently when he retired! Now that he is home all day he can see what an exhausting experience it is for me and has become much more helpful. Nonetheless there are still many times when I "look well" that he gaily suggests going on outings which I know are beyond my limited energy and strength. It is very difficult for other people to understand why we say no, we can't do anything energetic because it drains us. PMR is also hard on those closest to us. It has been suggested that you go back to your doctor and explain how are feeling and I wholeheartedly agree. Also, see if there is a PMR support group in your area. There is always this forum to talk to as well. PMR is life-changing in many ways, it is a learning curve, but you can turn it around. Learn to live with it and take up interests that are not physically draining, but are life-enhancing. The best thing to remember is to rest, rest, rest. By taking good care of yourself you could well overcome PMR and go into remission. I do hope you doctor helps you and that you can feel hopeful again, very soon.

  • Well done for finding a new job in the midst of all this. That seems an almost unattainable achievement to me, like you just flew, so hard especially holding it down on the bad days.

    I have come late to your post and I see that you have had such thoughtful caring replies. So much love and virtual hugs in response to a low moan of pain.

    I hope this state of mind lifted and if it didn't, you need to be equally frank with your GP. I am no stranger to depression and it sounds to me that it has you in its grip. If it does, everything will look completely hopeless. I am worried about the way you describe yourself, there is no compassion in there at all. You need help to get over this hump be it medicine or talking therapy, or joining a group that understands how this feels.

    I shouldn't be in the least bit surprised if the mucking about with your Pred dose by your doctors hasn't brought you here. You've had to face a lot in a relatively short period of time.

    In the mean time post often because we will all be worrying about you . Do confide in someone at work. People like to help, look at this lot on here.

    You are not alone Bonnig.🌸

  • PMR and Prednisone change our view of the world. I am alone also but happy about not having to explain resting, pj’s at dinner or eating differently than most people! The most annoying thing is splitting the bill with drinkers when I have water!

    Please act as if you are happy and joy will follow! Fake it till you make it! I am short tempered and probably a bit negative until I catch myself. Had to sell my business because PMR and work are a terrible combo. Is it possible to go on disability? Can you buy a beautiful wig?

    My prayers and thoughts are with you at this difficult time! We are here for you.

  • Sandy, I hope at least you enjoy imported sparkling water. 😉

  • Yes I do! Pelligrino works for me! Just got back to NJ from NY. Had 1/4 pumpernickel bagel. Still on bad food program. Have a bit more pain than usual (not terrible).could be from too much activity or bad food choices. Do you think I should skip 1mg Pred decrease tomorrow and just take another week at 16mg.? I’ve been decreasing 1mg per week since 25. Don’t want a flare.

  • If you've been travelling or otherwise out of your routine, why not slow the taper? Especially if you have some pain. I've learned that even good stress can affect the PMR. As PMRpro says, it's not a relentless race to zero. Might not even need a whole week, although I do appreciate the desire to keep the same day for each new taper.

  • Thanks. I appreciate the reminder that it isn’t a race. I feel pressure from my Doctor ( the authority figure) but I know to ignore it. I’m staying on 16 for another week definitely. Then I’m not sure what to do.

  • If you have uncoated 1 mg try cutting a tablet and then dropping by .5 mg for a while. When you get lower, certainly by 10 mg if not before, one of the slow tapers would help.

  • "Do you think I should skip 1mg Pred decrease tomorrow and just take another week at 16mg.?"

    In a word - YES! 1mg a week is far too fast.

  • Thanks. Do you think I should decrease by 1/2 every week or 2 until I reach 10 then go to LD’s 5 week method? I’m feeling pretty good if Idon’t overdo activities.

  • I don't like to give fixed concepts - take it one reduction at a time.

    And reducing EVERY WEEK is too fast - you need AT LEAST 2 weeks on a dose, and preferably more.

  • I like the idea of 2 weeks on a dose up until the magic 10. Then some slow method. This week I realize I need more time at 16 mg. Going back and forth to NY, then visiting my 94 yr old mom who is becoming more repetitious and forgetful, then going to Boston for a few days visiting my sister. I’ll be back next Friday. I will rest along the way.

  • So would I - but there is nothing magic about 10mg. You need what you need - and in the early stages it may be well above 10mg. Especially when you are gadding about all over the place...

  • Yes, I am gadding about but resting on my bed now. Walked 4 miles, got blood work, will go out to dinner and early to bed. Anxious to learn CRP and ESR scores.

  • All this gadding about seems to have increased my pain behind and in front of my legs and slightly in my neck and shoulders. It’s not terrible. How long do I wait and see if it passes before I increase Pred? Doc said to hold at 16. I am visiting my 94 yr old mom this weekend then going to Boston Monday to visit my sister. I can rest more in both places.

  • I'm not surprised - but it is more DOMS (delayed onset muscle soreness) from overdoing it than PMR itself so it is unlikely to improve with pred. I think you will have to be patient. You might find that an NSAID gel might relieve some of the pain - worth a try but don't use loads as it is also absorbed into the bloodstream although not as much as taking painkillers orally.

  • Thanks. I’ll just wait it out. Feel so much better with information! Resting at my mother’s. Hope I learned my lesson not to overdo. Hard to accept the old me is done!

  • Well I was fine with 1 mg per week until 10. But I didn't have symptoms until 9.😉

  • What happened at 9?

  • Felt gradually returning pain over several days. I waited a couple more days, longer than the usual week, it was just getting worse. My doctor, who at that time was on vacation, had told me to stop reducing if I felt pain returning but no other instructions. In the middle of a sleepless night I went on line and asked if I could increase the dose again. Found Patient forum, and the answer yes, and directions to dead slow nearly stop and tortoise not hare taper plans. Went back to 10 for two or three weeks then, with doctor's approval, started DSNS taper which has worked well, with my own personalized tweaks. Obviously the 1 mg reduction from 10 to 9 was too fast, but I still hadn't reached my lowest effective dose. About two years later I think I had (1.5) but same previously supportive doctor encouraged me to finish my supply of tablets, stop and see what happened. Even though I knew better I tried to reduce to 1, but developed a minor flare and am back to 4, where I was about 18 months ago. I think I am a person who metabolizes pred efficiently so the lower dose is good for me, but I'd rather have been at 1.5 for a couple of months before attempting further reduction. It appears I'm not in remission but still have active PMR. For a while I had thought I might be in remission, feeling as well at 1.5 as I now do at 4 (but increase to 3 hadn't stopped the flare). Paying attention to an extremely slow taper, as I had been following before the doctor's bad suggestion, which included refusal of prescription renewal, probably would have avoided a flare, I'm lucky it wasn't worse.

  • Sounds like you obviously knew better than the Dr. Why do we get intimidated by bad advice from “professionals”? It is astounding. We are grown ups and become children under their influence. I am thankful for building emotional muscle from forum friends and doing what’s right for me.

    I do have slight pain behind my legs and will pay attention. I am skipping my exercise classes since I have to go back to NY for eye dr. tests tomorrow. I don’t transition easily from my house to my apartment but I’m fine when I get settled. Have more travel through next week.

  • What kind of transportation do you use going to and from NY? Right now I'm on train to Montreal, where we'll change to another to get home. I love train travel, but Canada is so darn big!

  • Bus from NJ toNY during the week and walk or subway to my apt. Nice day today so I walked about 4 miles. Weekends I drive very early, leave the car parked and walk or take the subway.

    Where do you live? I need to take a trip to Canada since I’m retired. My son lived in Vancouver for a summer. It was beautiful.

  • Nova Scotia. We met a couple on our way to Ontario who like to take major train journeys all over the world. They'd flown to Halifax from home in California and were going to cross Canada by train, with sightseeing stops along the way. We lived in British Columbia for a couple of years and took train from Montreal to Vancouver. Recent trip was to visit daughter who lives in Ontario. Fantastic weather, mostly like summer, except a freezing cold night we went to a dark sky reserve!

  • So glad you are enjoying your travels. You must freeze in the winter. How’s PMR in the cold? Just getting a bit of fall weather now but it’s in the morning and evening and still warm during the day. Just put on a denim jacket for the first time since spring!

  • I'm so sorry Bonnig! I think you have dropped way to far and way to fast. That was a high dosage to begin with, I started on 15mg 5 years ago and have only made it to 6. Their is no rushing with PMR you stay at the dose that manages it. I have had 2 times my hair was coming out, and yes Prednisone tends to increase your appetite. If your a man being bald isn't the worst thing, a woman, you can get a wig for the mean time. We are all here for you and 9 out of 10 of us has walked in your shoes. If you need to increase to a dosage you can manage to be pain free and go to your job, do it! Remember, you are not alone!💕💕💕💕💕💕💕🙏🙏💕💕💕💕

  • All of you have responded brilliantly with sound encouragement and useful suggestions...as always!! The horrible depression is very difficult to speak of, to anyone. Friends and acquaintances die and I wonder why them and not me. Eventually the darkest cloud lifts and I can find enjoyment in something, but the charade is an on-going thing. I chuckle at the document in the doctor’s office that asks if you are depressed or suicidal....don’t think they understand the hopelessness of it all...who is going to check all the boxes? Advice to speak to your doctor is a good one, if you are able to be candid with him/her....otherwise you can whine to us day in, day out! And you have a lot to whine about😊 Your hair will eventually grow back...buy some pads to wear (someone here referred to the name of the pads!), buy some healthy bars, nuts, snacks that you can munch on all day without feeling so bad about it. You should be proud of yourself for getting a new job and getting out the door in the morning! Most people, PMR or not, are not so blissfully happy and well as you might think. Most people are Actors! REST is so critical...and I understand how hard it is for you to find time to rest. Sitting quietly and listening to soothing music (as suggested by Sandy) can distract you from those dark thoughts. Take one day at a time....bitch and moan to us...EVERY DAY if you like...we are in the SAME BOAT...literally💐🙏🏻😊

  • My sympathy added to all the rest of the good advice. I am alone also and have been on a five year journey of GCA and PMR ( they keep moving the goal posts on us ) . It was supposed to be two...HaHa. I have always been a glass half full person....and this illness does test that outlook. Everyone has bad days and we just have to allow oursekves the luxury of taking it easy. I had to abandon what I looked like....tell myself it was irrelevant . Got wigs....learn how to dress to camouflage the weight, . Anger at the doctors who scream about your dosage ....do not bother to read the updates on the condition etc. keeps me from going ballistic at times, fight for yourself. They are part of the problem. If you need more prednisone ...for heavens sake take it . I was not absorbing it and am on Dexatran and my blood work shows it is working, it Took me a year and a trip to the hospital to accomplish it but I did not let up. So I guess that along with acceptance I am advocating FIGHT .

  • Hooray!!

  • Hello Bonig,

    I can only tell you that the side effects you have suffered are almost identical to mine! I have GCA (4 years on) & now only down to 8mg. I also have had many 'dark times' especially in the first 18months when you do think it will never end, but (praise GOD) it does get better. This caring forum is a lifeline for us all & although we all are desperate to reduce the dreaded steroids, remember that they are keeping the disease under control. I am so much improved now & so will you be, perhaps as others have suggested, increase the dosage a little. Sharing your thoughts & frustrations is a start, you are not alone!

    you are in my prayers,

    God bless you.

  • There is so much wonderful support and sound advice here that there is nothing more to add from me other than thank you Bonnig for posting and to send you my best wishes. I very much agree with the person who said to stop "pushing" so hard, (although I'm sure your fortitude helped get you your job!) Forgive your body and please be good to yourself.

  • So sorry about how you are feeling and glad you feel you can share it. I'm on my own too after being widowed and all my close family live abroad. Skype is good but its difficult to feel virtual hugs!! I've been in the depths with my PMR too and wondering what there was to live for. But I've decided to get a cat from Cat's Protection, having been without a cat for 5 years now. I've chosen one and will pick her up next week. (Actually I think she chose me). I'm really excited and its lifted my mood. Something to love and to get unconditional love from in return. Stroking a pet also lowers stress! Maybe a pet would help you not to feel so lonely. Being lonely sucks! Its so good to have this forum to encourage us to carry on.

  • Please go to your doctor and tell them what you have told us. You are obviously clinically depressed and you need professional help. There are many ways to deal with the incontinence - and most of us probably use Tena pads. I had to for a few years, but eventually that has resolved too - even though I still have PMR. Little of PMR is forever - this too shall pass.

    You have had some great responses - many of us have been there too and believe me, however positive we may sound here we've seen the other side. And having seen the other side - we have climbed out of the ditch too.

    You must consider taking enough pred to feel better - hair loss is a minor problem in the great scheme of things. My older daughter has thin hair and has a selection of wigs - blatantly so, she has all sorts of colours. She has one that makes her look like my twin! Which since she is dark haired and 37 and I have been natural platinum blonde (aka white) since I was 40 is a fairish achievement!

  • Hi Bonig, So sorry you are feeling so down and agree with the advice you have been given. One thing I have learned is to focus on one thing I can change not the whole picture or too far into the future.

    As for the hair loss that will get better. Try googling Jo Rowsell (not sure of the spelling) she stood on the podium at the Olympics without a wig or hair when asked about it she said that was how she is and was trying to send the message to all women with hair loss that there is no reason to be embarrassed about it. Having said that she is the only one who when she takes off her cycle helmet doesn't have "helmet hair".

    Do something you enjoy, all good wishes please keep posting we are all here to listen and help if we can.

  • A few little things from me.

    This forum is great, you can see the support from all the replies to your post, us this as a place to post bad as well as good.

    For me, I find time with friends is really good, talk about all sorts of stuff, the place I go is a shooting range, spend more time talking than shooting, but it is so worth it.

    Loneliness is a big issue, nobody close to me knows what I feel like, that then makes me feel low. I try to keep a positive attitude, it's hard work and on times very tiring, but it keeps the darkness away, well so far it has.

    Take time to reflect on things, family, friends, loved ones anything that is positive.

    I try not to dwell on how I feel, but that can be hard, today I've decided that I can't take the next step down to 5mg. Take your time, yes, I've been told that on here and it's quite right, plan, but be prepared to change at any time.

    It is hard work being positive, but really helps me. I know it's not easy, but start of finding something you love and work up from there.

    Well those are some ramblings from me, there may be something of use for you or not.

    Just remember you are strong, just find your anchor, it will help.

  • Bonnig, I've also come late to this thread, but just wanted to add my 'virtual hug' to all the replies you've already had.

    You have so much to deal with, both illness and the stress of getting and then keeping a new job, and we really do appreciate how sad you are finding life right now. I'm no expert and no doctor, but it did strike me that you have reduced your dose of Pred so quickly that it's probably added to your problems rather than helped. Yes, there are side effects but the continuous pain and fatigue of not having enough Pred can be worse.

    I gradually reduced from 30mgm nearly 11 months ago to 6 and thought I was doing fine, got quite complacent really. Had a lot to deal with this month but I still started a planned controlled taper to 5mgm, beginning just alternate days. Piece of cake, I thought. Within a week I was exhausted, depressed, couldn't remember the important things I was supposed to be doing and generally couldn't cope and started to fall apart.

    Took a deep breath and, trusting all I'd read on here, took 7mgms for 2 days then back to 6 daily, and that also took me back to myself. If I hadn't been reading this board daily I'd still be on the taper path my GP told me to follow and would be wallowing around unable to cope.

    I'm not naive enough to think that an increase in dose will solve all your problems, but it might help, at least in allowing you to find your way back to yourself in the short term.

    I know you feel alone, but there is still kindness and love in this world and a lot of it has reached out to you in the past 24 hours. I hope you can feel it, because we do understand, and want in our own small ways to help. x

  • Bonnig, please let us know that you are OK. Thinking of you and sending you virtual hugs. xx

  • Hi Bonnig

    Do let us know how you are feeling today.

    The others have said it all and given you good advice and ideas and shared their coping strategies.

    Is your work full-time, or would you have space to join some kind of interest group? I am a member of westridingruggers.co.uk which meets once a month. If you look at the website you'll see some beautiful rugs that have been made. I would never have thought I could do anything like that, but I joined 9 years ago and I must be on my 20th rug by now! The picture by my name is a braided rug 36" diameter. It's at these types of groups that we meet others and help to fill the lonely hours. (I have no children or grandchildren and a husband who works 12 hours a day!)

    I also go to a weekly "Mat and Chat" group and probably do in 3 hours as much work on my rug as I would do in 20 minutes at home - the rest of the time is the 'chat' - the most important bit.

    I, too, pushed myself to 4mg and then flared, so had to go back to 10mg and am now tapering slowly to 7.5mg.

    I have felt bowed by the pain and diagnoses of PMR, osteoporosis and atrial fibrillation and the side-effects of the pred, including hair loss. Many tears have been shed and many pads purchased!

    You are doing so well resisting the temptation to eat loads. You are stronger than you think, when you consider all on this forum who have gained a great deal of weight. However, as has been said, you can give yourself a treat now and then. I have one small square of dark chocolate every day after my evening meal.

    Take care Bonnig and keep in touch. x

  • Bonnig, I too am suffering from hair loss and am a member of the pad committee! I have had pmr for nine months but was just recently confirmed and put on prednisone last month. I was one of those that was going the natural path with trying to control it with a whole food plant based diet. It did not stop the pain at all, it did however lower my glucose which was borderline so I'm staying on with the diet. My doctor out me on 10 mg. of Rayos and my pain stopped almost immediately. Five weeks later and I'm able to walk 3 to 4miles a day. I'm so afraid of tapering the prednisone thinking I might not be able to do my walking. It helps me alleviate the stress. I know this is not going to be easy but I will keep trying as hard as I can to keep moving, without the prednisone I could not move. Please give your doctor a call, try to get on a slower tapering. Prayer, my dog and reading also helps to keep me level. I am thinking of shaving my head, wearing a wig and letting my grey grow out so I won't need hair dye, maybe I'll like the new me and it will be a lot easier. Take care of yourself and know we are always here to listen. A soft hug to you sweet Lady!

  • Dear Bonnig, Certainly NOT a race to get to zero. I was down from 15 to 5 in 8 months. Too quick. Went back up to 10mg last Feb and now down to 5 again. I was in denial those first 8 months. Now, it'll take as long as it takes. I don't take the steroids at night because of being kept awake and have often counted from 100 backwards. No caffeine after 4pm. I too had and sometimes still have a massive appetite. And the sweating! Still on the search for the perfect antiperspirant. Your new job, your employer must have seen potential to employ you. Do they know about your pmr? As for leaking, it may be worth investing in some pads. Don't know if you are male or female, regarding hair loss, but read somewhere that it comes back post pmr. Keep it well conditioned. Best of luck.

  • Boning, l feel sad that you are feeling so alone,and having to work when you are in pain must be very challenging for you.lt does seem quite a fast drop in the medication,were you feeling better on a slightly higher dose. I have myself ,though many, years ago felt that l was in a very dark place,and it is not easy to get out of this,especially as you are suffering those awful side effects. I always find a great sense of peace in nature,walking through a wood,listening to the little birds,or sitting quietly by a river can help calm the soul.This may not sound very helpful it can depend on where you live to have access to these things.please keep in touch via this website,we are all your friends.Sending you a big hug,l hope you will feel a lot better soon.xx

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