Feeling very low

So, having woken up at 5.00 am again in pain, I have managed to stop weeping enough to come on here in the hope that someone can help me get a grip. I know there are far worse things in the world than having PMR but I am feeling very low and can't seem to shake myself out of it. I have been on Prednisolone now since September last year - 15 mg, went down to 12.5 mg, then 10 mg twice but had flares so went back up to 15 mg. Have tried this week to go down to 13.5 mg in the hope of lessening the side-effects, but today have had to go back up to 15 mg again - too much pain in hips, shoulders and arms. I feel defeated. I am 54 but feel like I have aged 10 yrs since being diagnosed and put on this drug. My hair is dry and thinning so I can see my scalp on the top, my teeth are chipping - little bits keep falling onto my tongue, when I haven't eaten anything crunchy to cause this - I now have a big, bloated stomach so none of my clothes fit anymore, a fat face and fat deposits under my chin, prominent veins on my hands, and last week I was told I have premature cataracts, which was a big blow. I get vertigo, tinnitus, palpitations, headaches and profuse sweating. I am wondering if I now have diabetes too - I have a strange, sweet taste in my mouth and feel like I smell different somehow. I have agreed with HR that I only work in the office on alternate days now but am finding the 1.5 hr commute (walk, train, tube, walk) a struggle even on just the two days - not sure I can carry on. I can't do my exercise anymore - even a gentle yoga class leaves me with burning muscles and totally wiped out. I can't seem to muster any enthusiasm to see my friends or go out - not that I could in the evenings anyway because I am too exhausted. I have totally lost my joie de vivre and feel detached from life. I feel like I am in mourning for the person I was - I don't look or feel anything like her - just an old, tired, bloated woman. I just want to get back into bed, curl up in a ball and stay there. Does everyone get these side-effects? I am surprised that I have because I am on a relatively low dose. I am seeing Dr Hughes again on Monday and I know he will be disappointed that I don't feel better than this - I am disappointed in myself.

Sorry to go on but I feel like people on here might understand.

113 Replies

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  • Hang on in there, Suzy Te.. I am new to all this, so don't have the knowledge that many on here do, but someone will be in touch with you who can help. Don't​ be disappointed in yourself, as none of us should be.. we are dealing with a medical condition and no blame can be attached to that, for any of us. It is a struggle, with ups and downs.. but you WILL come through it. God bless. 💜

  • Thank you, Cinka. Really appreciate your kind words. xx

  • Anytime, Suzy.. glad you are getting the support and advice you need, as I knew you would! This is a fantastic and invaluable support network, with so many people who have both a wealth of knowledge and personal experience. Plenty of people who care and understand and are with you every step of the way, as I have been finding out, recently. Here's looking to the future on the horizon. Take care. 💜

  • Thanks, Cinka. You are all so kind. This Forum is a godsend! X

  • I second that! x

  • Good morning. My heart goes out to you, so I'm bashing out a reply to keep you going before the wise birds reply.

    I'm very new to this game, in fact only days in with GCA. But I've been there before literally falling apart from meds and stress 12 years ago at 42 with cancer treatments. I was doing a full time job, kids etc. I kept on thinking that I had no options; life seemed unchangeable. I would change that word now to LIFESTYLE seemed unchangeable. I had a quick read of your first post and now this one. To me, you're still metaphorically drinking the poison that got you ill the first place. What you're doing many people would not last long even if they were well. I read it and thought how on Earth is she managing that!! Even going back part time at this stage.

    I had to give up my beloved job and leave my beloved house and garden as we had to downsize. It was thoroughly awful. My chest ached as I back away slowly from it on the last day, trying to keep a last look in my mind. BUT my poor body that had put up with such abuse was able to heal. My new garden needed changes and I set to in tiny steps and I am happy. My life took on other joys that I couldn't imagine when immersed in my old life. Holidays in St Lucia became a B&B gazing onto a beautiful Lakeland mountain with the sun making it pink as it went down. Life was different but so much better.

    The question is, how ill do you consider is ill enough to stop? The Pred is not a cure, just a crutch while you sort yourself out, though right now it must feel like your enemy. You've still got the stress and the Pred side effects together. Being a health professional and a bad patient myself, I know that bodies won't keep going and the real risk is that you won't have a job anyway and be too sick to make a new start.

    So, why am I here again with GCA if I know so much? Well, I'm an energetic, enthusiastic (because I had a second chance on life after cancer) busy bee. I love it. I care and am the strong one. A succession of life events including an elderly relative and again a job that became too much because of the other stuff. I didn't get out until too late because again, I couldn't bear the perceived consequences. I battled on for a year too exhausted to speak when I got home. A new job came up last Aug and was fantastic but VERY challenging and I set to energised and excited. Although I was happy, I think it was too late and I was spent really. So, here I am again. Whoops. Pacing myself is still a dirty word to me so it'll be a struggle but I don't think I'll get another chance if I mess this up.

    So, please think. You already sound like a brave person. If money was no object, what would you do? It that twit throwing his toys out of the pram really worth you sacrificing your life for?

    Speaking of gardens, we had a hard frost out of the blue last night so I'm off to check for casualties. I am rabidly competitive at our Village show so I need to make sure my babies are still ok. You know, if I give up work, I might even beat that retired bloke who walks away with all the cups every year! Now there's a thought.....

    Big hug

  • Thank you, Snazzy. Your words are an inspiration. I am so sorry you had to go through all that but it is uplifting to read that you have come through the awful times and are happy now, in a new life. I can't see that far ahead but I think you are right that I have to change how I am handling this. I had a counselling session yesterday and we talked about acceptance. To me that word means giving up but she said I should see it in a different light and that I need to accept this illness and learn to live with it rather than fight it. I am naturally a solution-finder but I can't find a solution to this and it is adding to the stress so acceptance is probably a good thing. With regard to work, strangely enough since my boss has really understood that I am ill and it's long term he has been very caring and understanding - maybe it's because I look so different and he can see I don't feel well. He has been a constant in my life for 35 years in July this year and it will be very strange to leave him and my only ever job behind, but I am planning to do that at the end of this year anyway and have told him so. I was just hoping that I could get through until then without going off sick but that no longer seems like a reality. Anyway, thank you again - I really appreciate your reply. Hubby and I are going to have a proper discussion on what we can do to plan for change so that I can rest more.

  • Hi Susy Te,

    It is not difficult to understand your situation, PMR suffers can really relate and sympathize. My tuppence worth! If you gave members an indication of where you lived I'm sure you could arrange some phone support if that would be helpful. I find the following helpful - massages, saunas, acupuncture, swimming 20 laps just about daily, low impact light exercise and meditation. Written 70 years ago by Dale Carnegie , Stop Worrying and Start Living, is in my books, excuse the pun , a must read to managing stress and the curve balls that life throws at us. Hope this helps, chin up!!!

    John

  • Hi John. Thank you so much for replying - everyone is so kind on here - I have a lot of messages since I last looked! It is very touching that people are so supportive and understanding. I live in Surrey. Thank you for the advice and ideas - much appreciated. There is a PMR support group meeting in Chertsey, not far away, but while I am working I can't make that day. Going forward if I have to go sick from work then I will definitely attend. I do have massages occasionally but find them quite painful and I feel worse afterwards. I will get back to the health club and use the sauna for sure. Haven't tried acupuncture yet so will look into that, and am considering hypnotherapy to help me deal better with stress. I shall have a look at the book - thank you. Chin is a bit higher today! Warm wishes, Susy

  • Instead of massage maybe try Bowen therapy - even if it doesn't help the PMR itself it does often make a difference with the add-ons and is very relaxing. It isn't as physical as massage which releases the cytokines from muscle tissue into the bloodstream and makes you feel as if you are flaring. A lot of us found Bowen helped - you'll know in the first few sessions and there is no point continuing if you aren't feeling some benefit.

  • Thank you. I will look into that again. You are such a mine of information - really appreciate it.

  • I'm so sorry that you are having to go through this, but it is really familiar to me! I have been on this journey for 5 years now and eventually had to admit defeat with my work last year. As a counsellor, I realised that what was my passion had become overwhelmingly stressful in my lowered energy state. I got burnt out.I am now trying to get my life back to some kind of balance, so that there is more to enjoy and less emotional pain ( physical pain is another matter)

    Hindsight is a wonderful thing but if you allow me to offer some hard won realisations, do look at your life as a whole and, in accepting that you have got this, try to work out what your priorities are- is it to be as stress free as possible to give your body a chance to heal? That is what I have realised I now have to do. Maybe I would have got rid of the PMR by now if I had realised that sooner- I just kept assuming that it would go away. Now I realise with horror that it might not and so it is worth me having more fun in my life now and not waiting till this is over!

    Goo luck! and don't feel at all bad if there are a lot of tears on the way- I could fill a lake with mine!

  • Thanks, Suzy. You are right - I need to accept the illness and make concerted efforts to reduce the stress to get better - or that won't be happening any time soon. I just thought I could handle this somehow - but the side-effects are really getting to me. Also need to get some fun back in my life!

    Thanks re the tears too - I wouldn't wish them on you but it's good to know I am not alone! xx

  • I meant to say, Suzy, that I wondered about training as a counsellor in the future - but actually I think I might find it too stressful and take on too much of other people's problems and emotions. Must be difficult not to take it home with you. X

  • I can totally relate to how you're feeling, especially when you mention your physical changes. I have all of those too and feel that I don't look like the person I was/am. Unfortunately, I can't suggest anything to help really except that it will pass I'm sure and things will gradually improve. I find I have bad days and slightly better days. Can you join a support group? It often helps to talk things through with others in the same boat. It seems the only thing we can do is hang in there and wait for the time when we can reduce the Pred and gradually reclaim the person we used to be. Others will advise you more than I can but you do have my sympathy.

  • Thanks, Carrot - appreciate your kind words. I find this Forum an enormous support but my local group meets on a day when I am at work. Having said that, if I have to go sick from work I will be able to attend! xx

  • SUZYTE. You must have felt so alone at that time in the morning. Believe me I am one of many people here that have felt the same way. I spent my last year at work thinking it was just old age, but I was close to retirement. When in fact I'm sure it was PMR. I was diagnosed just as I retired so at least I didn't have that worry.

    I have all the same things, I'm fat bloated all the problems of steroids. Hate having my pic taken. You know people are talking about your weight gain. I really don't want to explain my PMR to all. So I don't go out much now.

    I know it's not easy but try to take as much stress out of your life as you can. Your still young so I assume you want/need to work so giving up may not be an option.

    I have had a few stressful family situations. Lost two beautiful brothers. Had a new manager at work who was obviously ageist. Told him he wasn't getting rid I of me and he left before me. It all built up and I am sure that's was my trigger.

    All apart from missing my brothers are resolving themselves and I have stepped back from the things I can't. "I matter

    Be good to yourself my lovely. Don't try to climb mountains. Eventually do I'm told as we manage to reduce steroids the moon face etc.will decrease.

    Your not alone on this site

    Best wishes

  • Thanks, Chrissy. I am so so sorry to hear about your brothers - what a dreadful loss - my heart goes out to you.

    I really appreciate your kindness and advice - am going to try to reduce my stress.

    Warm wishes and hugs,

    Susy xx

  • Oh SusyTe you seem to be suffering from the same thing I get.... the thought that somehow i should be doing "better". You are a sick person and your life is going to fall into two camps., accepting what you can't change and changing what you can. Sometimes that is a slow process filled with trial and error and grieving. On bad days I feel exactly like you but on better days I get a second wind and tell myself I am one day closer to being well . Even being sick you have many choices in front of you. Keeping that in mind will prevent you from being a victim. Live one day at a time. You have my deepest understanding and tender concern today.

  • Thanks, Bunny. I really appreciate your support. Good to feel I am not alone. My friends just don't understand and keep saying "just come to the gym again - a workout or dance class will do you good" or "come out for a drink - take you out of yourself" - I feel they think I am "wallowing in it". But I really am not up to anything like that at the moment. Sometimes I can hardly climb the stairs to bed. Thank you again. X

  • Frankly I think you have to look at your expectations. I would suggest a lot of the pain you have is because you are not treating yourself as having an illness that can, at best, only be managed. We have always said that patients with PMR who work need more pred. I am REALLY well with PMR and pred - but the thought of your hour and half commute each way makes me want to cry. And you do it every day. AND put in a full day's work. No - that isn't managing PMR, the fatigue has to be managed by pacing. If you do that - you will probably manage with a lower dose of pred. You have to do your part and you aren't the first to be in the same boat.

    I was younger than you when PMR started and I had 5 years of it without any pred at all. I HAD to manage by pacing, I had no choice. I couldn't have done what you are doing - and just because you are taking pred isn't going to mean YOU can do it. I continued working - staggering from my bed to the computer desk, the furthest I had to go was the next room. But I crawled up stairs on hands and knees and could only go anywhere by car. When I had to give that up (wrong suspected diagnosis) I couldn't get out at all so I know how you feel being unable to go out.

    Cataracts are not the end of the world these days - it is a routine op. Unlike most people on the forums I would welcome them - I could then chuck away one pair of specs. But the other adverse effects you speak of may equally well be the PMR which is blatantly not being managed. I had them all then, even the dizziness. And it is perfectly possible (as it probably was for me) that you have a bit more than "just" PMR and a light degree of large vessels vasculitis - or GCA.

    I smelt different with early PMR - a few minutes in the gym (when I could still do it) and despite a shower in the morning and deodorant I stank. No other word for it. I have no idea if other people smelt it as strongly as I could - it MAY be a neurological thing that is part of PMR, other people have mentioned it too. But it wasn't due to pred. What I actually did was stop using deodorant altogether - and the problem disappeared. I haven't used deodorant since. And, no, I don't smell even after 12 years.

    We do suggest a lot that cutting carbs is a good start when on pred - it really does help with weight gain and also reduces the risk of steroid-induced diabetes. If you want I will explain the logic of the low carb approach. But you perhaps should get your GP to check your blood sugar level and possibly it would be helpful if you could do that before seeing DrH - is it an NHS clinic? I also banned mirrors when I did gain weight before I worked out the low carb approach worked. I lost all the pred-associated weight gain - and the first place it went from was around my midriff - trousers fell down.

    Trying to reduce by 1.5mg at a time is a lot - why did you choose that? And did you go straight from every day one dose to every day the new dose overnight? And if youa re in so much pain in the early morning it is fairly likely that taking your pred just once a day isn't having an antiinflammatory effect for long enough. Maybe splitting the dose would work better. Or taking it before bed.

    Depression is part and parcel of autoimmune disease anyway - and when you are trying to get your head around the changes of having a chronic disorder it is even more likely. It is bereavement, plain and simple. maybe some counselling would help - suzy could help with suggestions there I suspect.

    I'm sure you think we have been a bit brutal in places - but we are being realistic. This is a whole new way of life I'm afraid. But you have to hold on to the positive: unlike many autoimmune disorders, PMR does NOT kill. It is NOT a terminal disease, of itself it doesn't even shorten your lifespan or cause serious organ damage. And unlike most autoimmune disorders, for 75% of patients it goes into remission in 2 to 6 years.

  • Thanks, PMRPro. I appreciate your informed and thoughtful response. I don't have any sense of anyone being brutal - I really need the advice and support.

    I am actually only doing the commute on 2 alternate days a week now - at the suggestion of my boss and HR - and am disappointed to find that even that is becoming too much. Quite often when I get to the office I have to run to the loo and take some deep breaths (sometimes sobs) to lower my heart rate and psych myself up to work. I have a meeting with HR next week to talk again following my appt with Dr Hughes on Monday coming.

    I went down by 1.5 mg from 15 mg to 13.5 because I was desperate to reduce the side-effects and thought it would be ok to drop by 10% at a time - I thought I read that on here? Obviously it is no good for me at the moment. I went down to the lower dose for three days then back up for the last day I was in the office last week then back down yesterday as I was at home - but have gone back up to 15 today.

    I will look at going seriously low carb again - I have done it before so can do it again. Hopefully that will help to lessen the bloating etc. Thank you for assuring me that it should help. My appt with Dr H is first thing Monday at a private hospital so no time to have blood sugars tested but I will talk to him about it.

    The cataract issue was a shock and a blow as it was so unexpected, I think. She said not to consider an operation yet as I was still legal to drive with my glasses on. But the diagnosis just added to my sense of loss, what with the teeth and hair etc.

    The smell is a weird one - nothing like a normal sweaty smell - a sweet smell, a bit like fruit - and maybe ketones on the breath - which makes me worry about diabetes.

    I am having counselling - it was for work stress reasons originally but a whole load of other stuff has come out and now we have moved onto discussing PMR and how I have to accept it and live in the moment.

    I know I need to "count my blessings" - it is not cancer, it is not MND and it will go away one day. Just today is a bad one so I need to rest and be kind to myself.

    Thank you again - I really do appreciate your comments.

    Xx

  • If you are at the private hospital I'm sure they will have a blood sugar monitor floating around (if they don't, they ought to!) whereas a lot of NHS clinics might not.

    If you needed counselling about work - maybe the PMR is the (relatively) gentle warning that actually, you need to do something for you.

    10% is the MAXIMUM - and many people can't cope with even that much. If you are stressed then taking away your substitute "stress hormone" that your adrenal glands would normally be providing is going to make you feel pretty ropey. And you are stressed all ways round - emotionally, physically, at work.

    No - not sure I'd say "count your blessings" at the moment. I'm saying hold on to the lifebelt of the less horrible things about PMR while the more horrible ones are waves washing over you. Nor does it really help you to know we have all been there when you are drowning in it at the moment.

    It WILL get better - but first you have to weather this.

  • Thank you again, PMRPro. I will ask Dr H if they could test my blood sugar. I don't like to feel I am bothering the great man or disappoint him so I tend to go into stiff upper lip people-pleaser mode when I see him, which is not helpful.

    I didn't realise 10% was the maximum - I will take it slower next time.

    Right - am going to hang onto that lifebelt!

    X

  • Er- if there is one person you don't need to keep the stiff upper lip with it is him! But if you don't SHOW/TELL how ill you feel, how is he to know?

  • I wept copiously on the 'phone to his PA one day and she came in when I had my appt to see if I was ok and apparently had warned him it might be an emotional appt. I am as honest as I can be but years of holding it together is a hard habit to break - definitely a contributor to stress and this illness, I believe. I will be totally upfront with him on Monday, come what may. Thank you. X

  • I cried my eyes out recently through a double appointment with my GP and he was lovely. They must be used to it and it tells them exactly how we're feeling. I was a health professional and understood when patients cried, but it's different when it's us, isn't it?

    Everyone else has said everything else, but just wanted to send you a virtual box of tissues and a hug. x

  • Hi Rugger. Thank you for the reply. I do find it very difficult to let my emotions out in a formal setting - I think being a PA for so many years has made me too good at hiding how I feel and putting on a brave face when in an "office" or "interview" environment. Doesn't help having a military Father who considers any kind of illness as a weakness and showing emotion as a lack of moral fibre, bless him.

    Thank you for the tissues and the hug! x

  • Just thought I'd say that every GP surgery ought to have several. They often have spares because reps want the surgery to adopt their machine which is cheap but the sticks and bits to make it work on aren't but can be obtained on prescription. The GP might allow a machine to go out for checking at home a few times times a day but they would probably want to do a fasting blood sugar first. An HbA1c test is a better guide to your average blood sugar, especially if it goes up and down a lot and might be easily missed with a one off test.

  • Thanks, Snazzy. I will be in a private hospital seeing Dr H tomorrow so not sure what they will have there but will express my concerns about blood sugar to him and ask him how/when we can get the test/s done. X

  • All of those tests are basic and routine so it should be fine if they think it is indicated.

  • Thanks, Snazzy. X

  • Counting our blessings doesn't always help when we feel low. It can just be another way we beat ourselves up! You are perfectly entitled to whatever feelings you have and you ( and all of us) need to develop our inner nurturing voice. We need to develop our compassion for ourselves- being mean to ourselves gets us nowhere except feeling much worse!

    It's possibly our lack of self-compassion that got us into this mess in the first place!

  • Thanks, Suzy. Certainly putting others first to my own detriment is part of the problem, I am sure. Just don't want to swing too far the other way. X

  • One thing - yesterday my counsellor gave me a leaflet about someone called Dr Sharief Ibrahim of the "Vitality Clinic" who apparently specialises in "addressing chronic medical conditions and staying in optimum health". She doesn't know him but others have recommended him to her. Not sure whether or not to look into him and his approach, alongside being under the care of Dr Hughes. Wondered if anyone had heard of Dr Ibrahim?

  • I must say I have become very sceptical of anyone offering some kind of "cure" . Just as we have to be vigilant about what medical advice we take, I would also want to check out any other practitioner's qualifications, methods and skills. I have wasted quite a lot of time and money on ineffectual remedies. As a counsellor, I would not recommend any of these "treatments" to a client without a serious amount of evidence, as we can mislead our clients too. I would check this Dr. out with Dr. Hughes.

    Regarding training as a counsellor, if we have experienced knocks in life, I believe that can make us a very good counsellor, but only when we are well ourselves! Self-care has to come first. I have been qualified for 22 years and loved doing it until a year or so ago. That was when this illness stopped me from being able to keep a balance in my life. i.e. all my energy was going on work and I didn't have the energy to balance out by going out with friends, walking, swimming, singing etc.That is when I was no longer able to manage the stress of hearing so much distress and have needed to virtually stop all my work.

  • I have just searched the website - where it says something like "the charges quoted on the website..." . I can't find any. They have a Harley St clinic - I seriously doubt the charges are negligible. And the Disclaimer disclaims everything.

    I'm sure it is useful for patients who are obese, diabetic etc. I'd be somewhat sceptical he can do a lot for PMR. And I doubt I could afford it. I can however improve my diet myself. Free.

  • That was what I thought, PMRPro - think it will cost a lot for at least some things I can address myself. Thanks.

  • I am pretty sceptical about it too, Suzy. I think my counsellor was just concerned because I was in such a state yesterday and thought it was worth taking a look.

    I agree that those of us who have "been through it" can make good counsellors, but only when we are well enough.

    I am sorry that you had to give up on your passion - or at least a lot of it. Glad to hear that you are getting a better balance now. X

  • Hi SusyTe, PMR is life changing and so it is important we change our lives to accommodate all its idiosyncracies. I think I have had fifteen side effects from pred, including my hair making me look like a scarecrow and spending a fortune on trying different shampoos and conditioners to improve it. I try and pamper myself and have given in to the PMR, I have slowed down enormously and stopped doing things I used to do. I have found it very frustrating having to say no to things which I would love to do. On the other hand slowing down has made me look at life with a different perspective. I was lucky that I am a director of a family business and can work from home to a certain extent. I find my sleep pattern appalling, but I now just turn on the BBC World Service. I go swimming which I really enjoy although I need to rest afterwards. I have taken to having the occassional glass of champagne with friends, which is really new and a very pleasant experience as far as I am concerned.

  • Thanks, Piglette - very interesting and inspiring to see how you have changed things to adapt to PMR. I will get back to swimming and see how that goes, for starters. And start planning how to change my job situation. X

  • Hi SusyTe, go for it. I was very frustrated to start with, particularly as my rheumatologist said that I would be able to carry on as normal if I took pred and I thought there was something wrong with me that I couldn't. I then discovered he was talking rubbish and just gave into the PMR.

  • I too thought I would be able to carry on as normal once I was on Pred, Piglette, and instead I still have some pain and lots of side-effects. Need to accept that this is my normal for the moment and act accordingly! X

  • I am sure that I have had some pluses as well as the minuses. My nails are really strong for example. I am much more laid back now instead of always rushing around, probably better for my heart!

  • I am still relatively 'new' to PMR - only 6 weeks since diagnosis and yet had 'it' for a long time untreated. Just to say re the weight issue I started on PMRpro's and others' advice to cut carbs as soon as I first took pred and so far have lost about a kg a week. Blood sugar is meant to be better as well on this kind of eating style (as opposed to the dreaded 'diet' word) - and lowers risk of diabetes - though obviously no guarantees - we are all different. But just feeling you have 'control' over even just some aspects of the experience does help lots.

    Hoping you feel TONS better soon and NEVER ever worry about upsetting medicos - THEY are meant to be helping and supporting YOU !!

    All good wishes

    Rimmy

  • Thank you for replying, Rimmy. I am going low-carb now - should have done it earlier, I know, but have to admit to eating some of the masses of biscuits that circulate in our office all the time - mainly because I always feel so tired and shaky while I am there. No more! All going well so far today and it does feel good to regain some control.

    I do feel more positive today - and it's all down to you lovely people on this forum - thank you so much!

    Warm wishes, Susy xx

  • Well done! I hope you've found some tasty healthy treat to satisfy you so that temptation doesn't overcome you at work? Just so you know, real chocolate, the very dark kind, is extremely high in all sorts of good things. In moderation, good for us. ;)

  • Hi Heron! I am going to take an apple and some activated nuts into work with me from now on - need to keep my blood sugar level so I am not tempted by the biscuits. I have Willie's 100% cacao chocolate at home - an acquired taste but I love it! Thankfully it only comes in smallish blocks. x

  • I do find the really good chocolate satisfying in a very small dose. It's the sugar in over sweetened chocolate which leaves us craving more. What are activated nuts?

  • Me too - love the 100% cacao stuff and can't eat too much of it really, even if it came in larger packets.

    Activated nuts are ones that have been soaked overnight in lightly salted water in a glass bowl in the fridge and then dried - I put them on a baking tray on a low heat in the oven. I was told about doing that at a detox retreat I went on not long ago. It sounded like a load of faff but I have started doing it and they do taste completely different and are much softer. It is supposed to "activate" them because it gets rid of the enzymes on the outside and makes them far easier to digest. All I know is I like the taste.

    movenourishbelieve.com/nour...

  • I hate to say this, but the prospect of having to soak nuts and then dry them in an oven for hours and hours, and having to do this on a regular basis to keep up the supply, would be enough to make me not eat nuts any more!

  • Ha ha - I thought that too, but then I tried them - delicious. I don't eat meat so use nuts as a source of protein. It only takes about 15 mins in the oven.

  • The website indicated something like 8-12 hours drying time. And if using an oven you have to keep stirring - I would wander off and certainly burn them more often than not. I did have a food dehydrator once but it bit the dust some time ago. But thanks for the suggestion. I was reading that only nuts which are still alive can be "activated" because activation means you've started the germination process. I don't believe we can buy almonds that haven't been pasteurized now, so that's one nut not to worry about.

  • Hi Heron. I hadn't read that bit - I only really attached the link to show the reasons for soaking nuts. I agree - I certainly couldn't be bothered with all that faffing about. I just stick them in the oven to get rid of the moisture so not for long. Just prefer the soaked nut taste and texture to the normal ones - they seem more satisfying as snacks somehow. I know if I got a dehydrator it would end up not being used, like yours.

  • We used ours for years to dry apples every fall, as well as a few other things. Then I put it into storage and when I brought it out to dry some herbs it wasn't working any more, so we tossed it. It was good because at the most all you ever had to do was turn or shift the trays, never had to worry about conflagration. Our surname is Chard, so you can imagine what our family jokes tend to centre on!

  • I don't even know what one looks like, Heron but I am guessingyou might have a larger kitchen than we do because it sounds quite a substantial piece of equipment!

    Chard made me immediately think of Swiss!

  • No it was quite small, probably not more than 16" square, if that, with room for four trays spaced an inch or so apart. The heat was provided by a light bulb (yes, we did check the light bulb worked before we tossed the unit). It was lightweight and portable. The house used to smell really nice when we were drying apples or peaches. You can also dry yoghurt. Put plastic film on the trays and spread yoghurt (preferably fruit yoghurt) over, let dry, roll it up and cut into little pieces. Just like candy!

  • My family, who are of course the Chards, I'm only one by marriage, hate it when asked for last name and I say, "Chard, like the vegetable"!

  • Careful with the fruit intake - lots of sugars/carbs and you wouldn't be the first person to find they can't lose weight and it is simply too much fruit. Your blood sugar level will stop swinging about once you aren't eating enough carbohydrate to trigger large releases of insulin.

    I know - I'm a miserable sod...

  • Not at all - good point, thank you.

  • When you start swimming again do it slowly - no jumping in the speed lane and throwing off 20 lengths on the first day! Whatever you do you need to start VERY small and build up VERY slowly. I know it sounds boring but part of the problem in PMR is that the real disease is going on unchanged in the background, the pred doesn't touch that. It leaves you in a state like permanent flu. Do a bit one day and see how your body reacts the next - if you are OK, add a little bit more. Until you find a rest day where you can feel what you did yesterday. Go back to the level before. That will work for most people, you may find you need to do each step a few times. And don't forget the rest day.

    I used that to be able to ski with PMR - it took a couple of months to get up to skiing all morning and on consecutive days but it did work. Of course, then I had to start all over again the following season but that won't happen with swimming as you are doing it all year I assume.

  • Thank you for the advice/reminder, PMRpro - I am a bit of an all or nothing sort of person so that is most timely. I will take it slow getting back into my swimming and just do a few lengths at a time and then sit in the sauna for a bit and rest when I get home. All your wise words are very much appreciated and taken onboard. x

  • Most of us were all or nothing types. This is a new normal - but you will get back to something like old normal - with patience and selective activities. Sod the housework for example - that is just a waste of the energy we have!

  • I was told that often PMR comes to those of us who are perfectionists, which is along the same lines. I like the sod the housework! As Churchill would say, I will "keep on buggering on". Thanks again.

  • Good Morning SusyTe ..So sorry you are feeling this way but it is like reading about myself and i am also with Dr Hughes and waiting for a phone call to see if i can have my Appointment brought forward from May to next week. You are a lot younger than me ,i am 70 and have had PMR for 13years.. This condition does change our lives and having to keep pushing ourselves through each day fighting against pain is exhausting but through the tears i find that something positive comes along like a visit from my Grandchildren or a phone call etc. Like you i am trying to get below the 15mg steroid dose but everytime i reduce i have a flare to my legs .I always worry that Dr Hughes will be dissapointed with me but my body doesn't let me reduce. As you are with Dr Hughes at Chertsey do you belong to a Support Group as being with and talking to other sufferers does help and there is a Support Group at Chertsey and it's very popular.. I go to this when my pain allows..ive had a recent Bereavement which hasn't helped me but PMR does react well to TLC. I will watch your posts with interest and i will be thinking of you tomorrow on your visit to Dr Hughes. Ive got to get organised for my Family coming to have Mothers Day Breakfast with me and my partner .. Best Wishes trish29

  • Hi Trish. Thank you for responding - and nice to know that you are a fellow Hughesian! I hope you manage to get your appointment brought forward. I am sorry that you have had PMR for so long - that must be hard to take sometimes. I am glad that you have your family to support you and cheer you up - I hope they are making a big fuss of you today and you had a wonderful family breakfast!

    Such a b*gger, trying to get below this 15 mg - I sympathise - wouldn't wish it on you but glad it's not just me, if you know what I mean.

    The Chertsey group meets on a day when I am at work but if I do end up having to go sick I shall certainly attend.

    I am so sorry to hear about your bereavement - my condolences and gentle hugs.

    Warm wishes, Susy xx

  • Thank you SusyTe.. we all had a lovely Mothers Day Breakfast.My Family wanted me to go to a Restaurant but it was nice to have it at home. I hope Dr Hughes can make you feel better tomorrow and you have certainly had lots of interesting replies to your post .. That's the comfort that this Forum gives us and i find 13 years on and i'm still learning . trish x

  • Glad you had some quality family time, Trish, and you did what you wanted to do - have it at home rather than go out. I am looking forward to seeing Dr H tomorrow now - I will tell him how I am feeling and see what he suggests. This forum is amazing - I am touched by all the replies and have learned a lot from them. Thinking I will compile a list of the advice and suggestions. Enjoy the rest of your day and thank you again. x

  • I could have written this exactly to the letter! Except I am not under Dr Hughes - my hospital appointment was cancelled in March and rescheduled until September! All I can say is thank god there is this site with some wonderful people who can help me understand this condition. My GP is pretty useless and will sign any prescription i want for prednisolone.

    The side effects you've described are horrid and I empathise with you totally. I dont think anyone who isn't a PMR/GCA sufferer could begin to understand the pain, mood swings, fatigue, sweats and insomnia that we face daily and nightly.

    All I can say is that I do have some 'good' days where I can be normal though thoroughly fatigued . Enjoy those days because you know they done come along very often.

  • Hi Jude. Thanks for your message. So kind of you to empathise - it does make me feel better to know that you and everyone on here understands. My friends are lovely but they just don't get it and some are getting a little impatient with me, I think. Glad to hear you have "good" days - I hope this is one of them. It is beautiful weather here in Surrey today so that is always uplifting! Warm wishes, Susy xx

  • Dear SusyTe What more can I add, its all been said in these wonderful responces to your post. I just wish I lived round the corner from you to come round, give you a great big hug, you can cry your eyes out on my shoulder and then we'll drink tea and chat. I feel for you, I really do. Its a hard illness to swallow but as PMRpro said its NOT life threatening and we will all get better one day. I am still waiting for that day but with this forum and the good advice daily I feel better about it all. Good Luck SusyTe.....Mazz

  • Hi Mazz. Thanks for your message. Your kindness made me cry all over again - but in a good way, because I was moved by it. Feeling very supported by all the fabulous and informed people on here. Warm wishes and hugs back to you, Susy xx

  • Morning SusyTe, I do hope you are feeling much better this morning. My heart went out to you yesterday, you were so low and tearful. I still have days like that but not so often now, it gets better the more you adjust to the illness and can accept it. I get frustrated more than anything now, not being able to do all the things I once could, but then I tell myself to concentrate and enjoy the things I can do. Today is sunny and warm and I am o.k.....hope you are too. Mazz xx

  • Hi Mazz. You are very kind, thank you. I have just got back from seeing Dr Hughes, my rheumatologist. He is trying me out with Methotrexate for a couple of months to see if that can help me to be able to reduce my Pred dose and therefore suffer less side-effects. He also said that I can split my dose of Pred so that I take 5 mg during the night to help with the morning pain and then 10 mg after breakfast. Hopefully this will improve things. Having said that, my husband has just been told that he is likely to lose his job on Wednesday - so obviously that is a huge worry. xx

  • Oh dear - sorry, that is horrible. What does he do?

  • He is a Management Consultant at a big firm. Poor chap is so upset. He is working from home today so he could take me to see Dr Hughes, bless him. We got back and he received an emailed letter summoning him to a meeting on Wed with his boss and HR.

  • That's awful - what a way to tell him. Is he old enough to be able to retire? Or get a redundancy package?

  • They are cut-throat in the City, sadly. He is too young to retire and the most he might get is three months' notice/salary. We will have to rethink a lot of things - but we will get through this together!

  • Maybe this is a chance to get out of the City? Once you aren't in the immediate circle of the smoke life changes dramatically in every sense of the word.

  • I think you are right, but he doesn't see it like that - just that he has failed and it has badly knocked his confidence about finding another job. I will do my best to talk it all out with him. Thank you again.

  • No - they have failed him. Has he ever thought about freelance consultancy?

  • I agree - they have failed him totally. He did some freelancework a few years ago - will talk to him about that again.

  • Just when you think things may improve with the Methotrexate the hammer falls yet again with the awful news your husband may lose his job. Oh dear SusyTe you are not in a good place at the moment and you must be wondering what else can go wrong ! My mother always said, 'All things come to pass' and when things get really bad I always remember this. Hope you can reduce the Pred successfully. Take care x.......Mazz

  • That is sort of what I thought - what next?! I was going to talk to HR this week about taking time off but I think I had better wait now - can't risk losing my job too. Thanks for the support. x

  • Hi,SuyTe

    Please just get a grip on your self and giveyourself a good shake I wish 😭I for one know exactly how you feeling I got diagnosed with PM myself Jan this year 2017 had realy bad Christmas and even worse new year I older than your good self by 4 yrs and I'm Male but always been very active I work in security and provide close protection for COP's so work is very demanding and active so need yo be at the top of my game.

    But like you feel realy down and just want to sleep has at times even the simplest of things turn out to be a big chore to do .

    Having a young family also it is doing my mind in.

    But life needs to go on so chin up do little and often but don't give up😉

  • Hi Bigg. Thanks for replying - really appreciate it. So sorry that you are feeling low too. I hope where you are the sun is shining today and your family have cheered you up. Chins up and onwards and upwards for both of us! Warm wishes, Susy

  • So much good advice that I can't really add to. I think that no one really understands this condition unless you've been there and that's why this forum is invaluable to share and be able to vent your feelings. I think too that acceptance is the key , which is easier said than done. Especially in the earlier stages I think it can be quite frightening but as time goes on I like to think of acceptance as being " redefining." No we're not able to do so much, not able to cram everything in, not able to help in the way we did but we are able to prioritise, to learn to say no, to start to value ourselves for who we are, not what we do, to notice and enjoy the small things in life and to not have to do and attend a lot of things we didn't want to do anyway.

    As others have said start to take control of the few things you can- your diet;the absence of carbs does work so well,light exercise, pacing, new hobbies, looking for ways to pamper and enjoy yourself- many of us didn't have time for this before! This is your time to redefine and move from the caterpillar stage to the development of the butterfly albeit by an unconventional and hard route. Yes life will never be the same but we can try to make it better even if we have many ups and downs and it seems to take forever.

    I too was involved in counselling and know if you have that " counselling heart" it never goes - doesn't have to be a job but you can use it whenever which I'm sure you will.

    Jackie x

  • Hi Jackie. Gosh - so many lovely people with such great advice - thank you so much. I feel thankful and grateful to everyone on here for listening to my outpouring and being so supportive.

    I think that is the thing - these changes have scared me - I don't recognise myself anymore. But in accepting I can begin redefining. Certainly this illness has made me think long and hard about what/who is important to me and what/who is most definitely not. It could result in a whole new way of life - that is how I shall view it from now on. I did think in the future I could do a refresher of my Reiki and possibly add another holistic skill so that I could help others.

    Thank you again for your kind words.

    Warm wishes,

    Susy

    xx

  • Dear SuzyTe

    I've been reading through this post and taking comfort from the comments after a day when all I wanted to do was CRY!

    I have not experienced even half of the horrid things you are dealing with and I don't have to try to work since redundancy five years ago, but coming to terms with PMR and it's every day effect on my life is really getting me down.

    I had to increase to 15mg after a week at 13.5 and its barely controlling the pain so I feel I am already losing the battle and "failing" to manage the PMR. And I don't accept defeat and failure well at all. I am also a solution finder and fixer of problems, but I can't fix myself and it's the hardest thing I have ever had to deal with.

    My thoughts are with you, SuzyTe, and much love, Chrissie

  • Oh Chrissie, I am so sorry you were feeling so down too, my lovely. Glad you found comfort in how lovely people are on here and their advice/suggestions. I understand about the failing and not being able to fix it issue - that is how I was feeling. It is so hard to accept. But there are things we can do to help ourselves feel better mentally. I am going to stick at the 15 mg for a bit and in the meantime really take care of myself. Low-carb to drop some weight/bloat, regular gentle massage, look into acupuncture and hypnotherapy, get back to gentle swimming, make sure I get enough rest, take Epsom salt baths - and pamper/treat myself. I have just bought some lovely floaty silk tops online in the sales - they should cover up any lumps and bumps and keep me cool (ish) through the sweaty times. Just thought I deserve it! Hope you can treat yourself in some way that lifts you, Chrissie. Sending you love and hugs, Susy xx

  • You sound so much more cheerful Susy, that's great. And you have some lovely treats ahead. I must do the same, slow down and take care of myself.

    I was also wondering about methotrexate but I guess it's early days for me, only been on the steroid regime since late January.

  • Hi Zebedee. I do feel more positive now, thanks to the incredibly kind people on this forum, including you of course. We must put ourselves higher up the list rather than looking after everyone else first. I feel guilty if I treat myself, which is ridiculous. Maybe it's because my first school was a convent. 😉 I reckon if we can reduce stress levels we should hopefully be able to get the Pred dose down but if not then Methotrexate might be a possibility but of course it brings its own side-effects and restrictions. X

  • I am approaching year three of PMR and have had several relapses trying to reduce the prednisone. About a year ago my doctor suggested methotrexate. I was very reluctant to go on another drug, but it worked. It allowed me to reduce the prednisone significantly and I'm now down to 4 mg. and will continue reducing the dosage very slowly. I have had no side effects from the drug. The only drawback for me was the doctors insistence that I drink no alcohol. I'm from the USA and I'm not sure if methotrexate is used in the UK, but you might want to speak with your doctor about this option. If you can reduce the prednisone, it's likely you'll get back to being yourself. I'm hoping you'll find some relief soon.

  • Hi Jac. Thanks for your post - kind of you and much appreciated. We do have methotrexate here in the UK. I did mention it to Dr H last time I saw him but he didn't want to try it just yet - I will see what he says tomorrow when I see him. The alcohol issue might do me good, actually - although I would find it hard - when I am feeling low I do love a glass of chilled white! Thanks again. Warm wishes, Susy

  • Glad to hear from somebody who has used Methotrexate without problems. My Dr has been suggesting it and I've been resisting. But I see maybe it'd be worth trying.

    Thanks for info.

  • Hi Bonny. Just looked at your post from a couple of months ago. So sorry you have GCA and also been having horrible side-effects from the Pred. Just wanted to send you some hugs. xx

  • Hoping I have replied to everyone who was kind enough to respond to my post. I cannot express my thanks enough to you all - you have made me feel so much better and I appreciate the support and care. You really are a wonderful group of people! :-) xx

  • Hi Susy Te,

    High levels of stress seem to be the common denominator for this dreadful disease. To hear that you are enduring a full time job with a brutal commute is enough to want to make anyone cry. My wife has PMR and is managing with 10mg Pred right now, fearing that increasing back to the original 15mg will enhance the side effects even more. But, on the days when our sons come to visit us, my wife prepares these elaborate meals for them, and even food for them to take with them for the week. It is after these days that she feels so much pain, so sickly, as if she had never been on Prednisone. I keep telling her not to do this, but she does it out of the goodness of her heart, but she pays a huge price in the meantime.

    I don't know your situation, but in my unprofessional opinion, if you could stop working and commuting, your PMR could be managed a lot easier.

    Joe

  • Hi Joe. Thanks for your reply. I think you are right - I need to sort out my working life and my hubby and I are talking about that. Sadly we don't have kids but I do understand your Lady Wife making those special meals for her boys - my Mother used to do the same whenever my brother came to visit. Also it probably makes her feel "useful" and still needed as a Mother, if you know what I mean. You are obviously a wonderful, caring man (and husband) - I can tell from your kind words. Thank you and warm wishes to you and your Lady Wife x ps hope that expression is not weird to you - a bit ye olde English but we use it in my family!

  • Wow SusyTe!!!!!!!!!!!!!!!!!!! I think these are the most posts I have ever read, since being on this forum last year. IF ONLY I had known about this forum, and Kate Gilbert's book, years ago, I would've handled things differently. Going on 12 years PMR/GCA. The advice is incredible and the people VERY KNOWLEDGEABLE!!!!

    wHAT STRUCK A CHORD WITH ME, IN YOUR POST WAS; Mourning for the person I was'. So very true for me and many others.

    As for the cataracts; I have had both eyes done. Marvellous op. You see so very much better afterwards. I wore glaSSES FROM AGE 12, now only reading glasses.I am now 70.

    Things DO improve. You 're-structure' your life, and LIVE it.

    I know how far I have come, when I read your post, and had those emotions, even anger, then denial. Acceptance isn't easy, but necessary.

    Keep in touch and let us know how you are getting on.

    Big hugs.

  • Hi Karools. I know - I am a bit overwhelmed by all the responses, and the kindness and support given!

    I am sorry you have had this illness for so long - I find it hard to imagine, it being early days for me. How have you coped? Did you have to give up work?

    Re the cataracts, thank you for being so reassuring. I was shocked to be told I now have them at 54 and especially as a result of the Pred. I have only worn glasses for driving for the last 20 years and for reading in the last couple of years. She said that it would be a few years before I could/should have an op but I guess it would be good to be able to see totally clearly again.

    Thanks for the hugs - sending some to you too and thank you again. X

  • "She" may not be correct - sometimes they gallop when you are on pred. The recommendation is they should be done as soon as they interfere with your life. Not only does their progress vary with pred though, the amount they affect you does too.

  • Thanks, PMRpro - will monitor my eyes . At the moment apparently I am still within the legal limit for driving when wearing my glasses.

  • It may not happen - but just recently one lady's had deteriorated from "you're fine to drive" to "good lord" in just 2 or 3 months!!!!!

  • Oh Lordy - poor lady! I really hope that doesn't happen to me.

  • I know how exactly you feel......I don't think I will ever "accept" this new life....I certainly admire those who can adjust, but I haven't yet and I grieve everyday for the life I've lost....

    Cheers

  • Bless you, Dora. Not sure how long you have had the illness but I guess we have to hang in there and hope/believe it will go into remission at least at some point and then we can get back to some sort of "normality". Sending you hugs. xx

  • Like being "on a diet" or changing one's eating habits for whatever reason, I do think one often has to make a conscious effort to hold on to the positive aspects of "I can..." ahead of the "I can't..."

    The process of acceptance has one big plus: all the energy you devote to fighting against the constraints comes in very handy for adopting new habits. And while perhaps it came a bit earlier than you would have liked, there is not a lot of the change you wouldn't have been faced with sooner or later. Like my husband faced hearing loss overnight in his early 40s instead of in his 60s - the same loss of high frequencies would have come sooner or later. There are other ways of doing most things so the loss is less.

  • Yes, PMRpro - you are right, of course. One just has to reach that point in the mental process. Thank you for your wise words.

  • I am so sorry to hear about both the pain and all the Pred. side effects that are plaguing you. You will get lots of support and sage advice here, so please keep coming.

    I have one thought that might or might not apply. I was tired of waking up around five am and feeling the cytokine dump followed by pain. I started taking 5mg of my daily dose in the middle of the night, whenever I got up to use the bathroom. It made my day start better and I was able then to convince my Rheumy to switch me to night time dosing on Delayed Release Pred (Lodotra where you are, Rayos in the US where I am) I sleep through now and wake up feeling better. (except when I'm beginning a taper it seems)

  • Hi Hindags. Thank you for that idea - I will talk to Dr H about it this morning. I think I talked to him before about splitting the dose (brain fog prevents me from being sure) and at that stage he didn't think it was a good idea - but that was months ago so will speak with him again.

  • Hi SuzyTe

    Your messsge so resonated with me. We are all on this PMR or GCA journey together.. for me it is the latter. I eagerly read all the messages every morning. We are the people who understand. I don't even disclose to my husband how I feel most of the time. I don't tell him I am upset about weight gain, puffy face and neck or low mood. I hope he doesn't notice. As if.

    Hang in there.. this will come to an end. You will get your life back and reclaim your life.

    I obsess about reducing pred as each reduction feels like a victory. Every time it doesn't work out, it is a crushing blow. I feel it is all part of the grieving process for our lives before this hit us. If I had a suggestion it would be to keep communicating with us. Take life one day at a time and try not to project forward to next week or next month. Little steps little steps.. I wish you well as we all do xx

  • Thank you, Elaine. Your warmth and care shine through in your words. So many kind people here - it is very touching. Will keep moving forward with baby steps. I am sorry you are struggling with reducing the Pred and I do understand, as we all do. Thank goodness we all have each other. With love and hugs xxxx

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