Currently experiencing fairly severe headaches at the same sort of time every evening, often involving eye strain and sometimes a poked in the eye sensation. It has become so regular I dread it. I have tried over the counter pain relief that doesn’t touch it - even Tramadol from earlier. Last night I took an extra 1 mg of Pred and finally it began to lift. It is a bit like migraine, over the front of my head and eyes. Is this another warning that I can’t get below 7 mgs even by 0.5 dsns?
I read and use screens a lot but I also sleep at around 3 pm. The time makes no sense although I take Pred, Thyroxine and Atenolol in the mornings. ( Thyroxine on its own at least an hour before anything else). Nothing seems to lift it - different kind of day etc
It lasts for about 4 hours and then in bed I can feel better than I have all day.
What is this fresh hell? Could it be PMR?
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SheffieldJane
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My surgery treat every symptom in isolation. Every time I go I feel it’s a waste of time. There is much more sense on here. It’s the spectre of GCA that worries me of course. Thanks Janette, your doctor is lovely, I know.
Spread fingers, then through your hair and gently tug all over.
Each hair has a little muscle at the base and by doing gentle tugging it releases the tension.
When I had GCA he told me about the muscles at the base of the hair. Thinking about it, the oxygen supply to all muscles is impaired with PMR and GCA.
I tried it, it works and have passed this tip on to others.
You can watch demonstrations of the Shiatsu Head Massage on line. I found the gentle tugging worked as the full thing needs another person. My hairdresser of over 40 years offers Shiatsu hair washes in their salon they do not charge extra. .
Two great ideas there! I envy you your hairdresser. Mine does a short head massage with a conditioning treatment. It feels wonderful, I’m too shy to say MORE!
When PMRpro and A N Other, decided to write a booklet called 'Living with PMR&GCA' they included a section of 'Tips and Tricks' supplied by existing people with PMR and/or GCA.
A small charity agreed to publish and that booklet has run into three re-prints.
Thanks Ron. Please have your eyes checked out though! We only get one set. I know blurred vision is a Pred side effect but we can’t take anything for granted. Good luck to you too. 👍👍👍👍👍
I also get more blurred eyes at night even if I'm not watching tv, iPad etc but I do have cataracts around 4 months ago the optician said not ready for removal hope they are soon, I do get scared as I also have GCA I've pad now and again pain in my right eye butnot very often
Bummer. I am so sorry to hear this... I hope the experts can shed some light on it for you. Did it just start? Are you anxious or do you start thinking about anything in particular later in the day? Sending healing thought and prayers.
I haven’t mentioned it because I will be given migraine tablets and be sent on my way. I paid privately to have my eyes thoroughly checked out and have new glasses, prescription sun glasses and disposable contact lenses.
I read well without glasses but maybe it’s a strain on them and I should get yet more glasses.
During that eye exam. I was told that I didn’t have cataracts, I had previously been told I had, and felt depressed about it!
Sorry to hear you’re going through another bad patch...you seem to have had one thing after the other recently.
The fact that it occurs at roughly the same time would indicate that something is triggering it, which I guess you’ve already thought of!
As you’re at a tricky dose anyway, I wonder if you need to look at any way you could adjust that - splitting it maybe? Especially with your comment about feeling better at nighttime. There’s obviously something not quite working - yes I know bleeding obvious statement, but I’m trying the think it through as I’m typing!
If you don’t get a sensible answer from GP or optician, perhaps you need to experiment a little!
Perhaps you ought to stick to that for a little while.
You don’t get any medals for toughing it out you know! Disappointing as it may be, perhaps you’ve got to acknowledge that you actually need 8mg at the moment. Won’t always be like that,.........but just for now.
Sympathy for the headaches and not knowing what is causing them. My life used to be dominated by migraines.... till chemo induced menopause 🙄 every cloud has a silver lining. Anyway..... Your comment about going below 7 rang a bell. Recently I've been tapering between 7 and 6 and feeling rotten. Shoulders absolutely aching 24/7 etc. Persevered because had blood tests due and doc appointment. She told me to go back to 8 for a month then back to see her. Been almost a week at 8 and slightly improved but still dread bed and getting out of it in the morning. My point is (eventually) that 7 seems to be an unlucky number for many of us. Hope that maybe upping your dose gives you some relief from those horrible headaches 🌻
Thank you Hollyseden. It does seem to be a real obstacle to get below 7 mgs. I really am relatively PMR pain free. Very fatigued though and then these awful heads. I am flexible and have some physical stamina. I was casting around for another cause of the headaches. If 1 extra mg finally gave me relief, I guess I have my answer. PMR in another guise or Adrenal Insufficiency.
Last night at dinner, the farewell dinner at the end of our tour, once again I couldn't drink the wine and still had lingering headache despite painkillers. My neighbour told me to take a little salt and if it didn't taste salty, but maybe a bit sweet, I needed more salt. Over the next little while I consumed several pinches of salt and more water. This morning, no headache, first time in several days, and one of few during this holiday I've not had one, although usually they went away with breakfast. Point of story, setting aside GCA possibility, maybe there is something you need to do, or stop doing, around midday to prevent the headache. Good luck with the detective work. ☺
At mid -day I tend to be doing what few domestic chores I can. At 3pm l generally sleep (90 minutes). There is possibly something about skipping or not paying sufficient attention to nutrients. We eat as a family at about the time my head starts up. No stress there. Husband cooks, pleasant conversation with son.
But it also occurs to me that headache is one of the symptoms of poor adrenal function - and normally you would produce a spike of cortisol in the afternoon. Maybe that is what is missing?
Blimey, pleasant conversation with son. My stress levels usually shoot up once the "Beloved children" arrive home. You've definitely done something right Jane, be very proud. Good luck with finding satisfactory answers.
He is normally a rumour in the attic. He’s a bit of a boffin so I’ve upped my conversational game. Girls, I found were much harder. That was stressful but I miss them like crazy now they live in Australia.
Hi I have the bursting sensation in my right eye now and again. Know exactly what you mean. Had it about a week when coming down from 7 to 6.5. If I pressed gently on my eye ball it felt tender . Recent full check up at Optician went well. No concerns. It’s very weird feeling. Sometimes it’s a sharp pain - other times just like pressure. No vision problems. I’ve had it tapering before. Also trying to take one anti histamine daily as could feel headaches coming on last month. Hay fever I thought - but could be tapering. Like you on a bad day I’ve gone up one. Paracetamol helped me with headaches if I get to it before it gets a grip. And I get a head massage once a month! Just had a day of doing nothing with the doors open enjoying this gorgeous day - except I am tidying out various handbags strewn round the room of receipts and rubbish! So achieving something! Take care.
Good job to do! My very old ones made me sad. Full of painkillers and things to help me cope with work, like a survival pack. Smart bags from pre- diagnosis, telling a story.
Yes that is exactly it with the eyes and tender to the touch eyelids. That’s reassuring in a sense, it’s clearly part of this whole thing.
Your day sounds perfect. I went for a walk with Gordon around the tree lined streets and through a quiet little park, must have gone a couple of miles - fine except for one hill.
I wondered about antihistamines. I have a nose throat thig going on and itchy legs, with nothing to see.
I do not have headache, but do have the nap-swoon. So sorry about your headache. I think that because it is at the same time perhaps it is the screen time at night. I love the tug on the hair and massage and the salt mostly. Have you cut out too much salt. There should be a screen dimmer ..at least on the kindle fire there is.. that turns the screen yellow and takes away the harsh blue and is supposed to be a huge help going to sleep. Other than that maybe put away screen and just read the real books for a while. Good luck. I hate that you are hurting!
Oh thanks yogabonnie! 🧡 That swoony feeling used to scare me, now I meet it half way and go to sleep. Millions of Europeans can’t be wrong with their siestas.
I wonder if the IPAD screen can be made less bright? I have a paper white kindle. Books are a good idea as long as they are not the big heavy biographies I like - I drop them on my face in bed I’m such a weakling.
Just back from a lovely long walk amongst the Sheffield trees ( the recent local election results with more seats for the Greens, have given them a stay of execution, thanks all that is good,
Dear Jane, I hope you get some relief from all the lovely comments on here. I just had an image of you giving yourself that lovely head massage, reading a big biography and it falling on your face, as you say happens. That might just sort the whole thing out : - ) Take care, sending lots of good karma your way.
Jane, Tramadol is quite strong so if that didn’t help whereas a 1mg extra dose of Pred did, then it certainly does seem to prove that you need that extra bit of Pred at the moment. Don’t be in pain - it doesn’t mean you can never get below 7mgs, just not right now.
So sorry to hear about your new trials and tribulations. I agree, the types of symptoms you describe are bound to raise the worry about the possibility of GCA on top of PMR. As you say, GCA is the more serious spectre of this illness that I'm sure many of us fear too - me included....
I see that the Aunties and our other friends here have pitched-in with their good advice - especially about seeing an optician? But if you're really scared and / or think you're having GCA symptoms, you know what to do.
Keep us posted, andhoping you get some resolution / peace of mind very soon.
Thanks Mark. My eyes have been thoroughly checked using the latest technology. Nothing untoward can be detected but they cannot tell you absolutely not, so the fear hovers. Particularly when your head feels like it’s going to explode ( I am not exaggerating). Apart from that and the df I really thought I was ready to go down a half mg. Seems not.
Have you got an eye patch that you can. Keep in the freezer? I have two, from the body shop,my ears ago; one for me and one for my daughter. They are very soothing - she gets terrible migraines and they help. I know you have much worse than a migraine but it's all I can think of to help.
I think it’s probably the same as a bad migraine. That actually does sound good, the eye patch idea. There is a lot of tenderness in the eyes. No visual disturbance though.
Hi. Are your headaches 'in' your head or around cranium? Are you sensitive across scalp? I am GCA only - at the moment - and these are indicative of reducing but I am battling through which GP urges and seem to settle in morning. Do check temporal arterirs to make sure they're not swollen. Eyes a constant soreness and have high iop (so also on Ganfort). Still waiting for cataract op but this seems to be side effect of pred! I think the various discomforts are all manageable because I believe I am getting better - just seems a very long road, and work is difficult.
Did headaches start in recent hot weather when air pressure up a bit?
Hope you find some answers soon as sorry you fear the evenings.
So sorry to hear of this new torture. And the angst that goes with it. Since upping the Pred relieved it, might splitting the dose help?
Do you by any chance have seasonal allergies that might recently have kicked in? Mine give me headaches particularly at the end of the day. And pain around my eye, but not stabbing. Some years ago I started having migraines the day after I’d been in a new office where my chair faced out to a very sunny window. My doctor lowered the HRT I was taking at the time and that helped, but what did the trick was changing the seating in my office so my back was to the sunny window. 😎
In any case I’d head to an ophthalmologist, just because.
I am quite photosensitive when the headaches come on. I have to shut my eyes when the screen of a tv swings around or flashes. I don’t like to be bumped or shaken as it hurts more. I took an antihistamine for itchy calves today or is it calfs. I think my head was less painful but I did take an extra 1 mg yesterday. I hope it is that.
Hello SJ. So sorry you are having such a bad time. Could it be in any way related, deep down, to your impending cruise and all the anxieties that might go with that? Wishing you well and SOON. x
When I was on high dose steroids, my vision became very fuzzy & l found middle distance particularly bad.
My optician made me a pair of middle distance glasses & they were invaluable.
Are you Shortsighted (Myopic) do you read without glasses, holding the book or Kindle close to you? That’s what l do, reading glasses are a pain!
Maybe you should check the headaches out with your GP.
Now that you say that my optician did suggest reading glasses. I love the sheer unencumbered feeling of reading for pleasure without any glasses. It doesn’t have to be really close. I had already spent a fortune upgrading all eye glasses and contacts. I thought this was unnecessary.
I am myopic - very. Someone needs to write a manual on how to age, all this is shock after shock. Suddenly eyes, teeth and all round health are guesswork.
I don’t use my reading glasses much but I found the Mid Range Ones 👓 really useful, my optician saw me a lot while l was on higher doses as he was concerned about the pressure in my eyes, but it’s all settled now. x
So sorry you're in such pain. Bl...y PMR! The trouble is we never know if it is PMR or something else.
I don't get the same as you but since taking Pred my eyes become tired very quickly when reading (books and iPad). Eyes tested ok by optician so I'm thinking it's the Pred. I also am sensitive to light.
The DF is a horrible thing because it's another thing that's out of our control. I tried to explain it once to my GP but I'm sure he didn't really understand. What's new!
I know how disappointed you must feel about upping your Pred (I've just gone from 7 to 8 to 10) but it's not for ever. I know that you already know this but it doesn't stop the feeling of disappointment.
Sorry I can't suggest anything different to what has already been suggested but I hope you feel better very soon. 🌼
Thank you Footfairy. My GP wanted to send me to a sleep clinic when I know the cause is PMR and Pred. There is no joined up thinking at all.
Sorry to hear of your eye & head pain Jane. If it helps! My experience of GCA head pain was one of never experiencing a pain like that before. Almost an electrical pulse through the back of my eyes & a prickling sensitive scalp & face. Always worth a GP visit if it doesn't go.ATB.
I imagined it was like that. As if there was an actual process that was going on. My heads have more of a sick chronic nature to them. Thanks!
Maybe spend less time looking at screens? Too much can also hamper sleep. Have your eyes tested and tested regularly .... stronger glasses for close work may be needed ? Or if you don't wear glasses an eye test may show you need some.
Lots of advice on here Jane to consider, I'm late on today due to bad night, but as a fellow headache sufferer (used to get migraines when going through the change, 10 years, then they just left!).
After that never got headaches until getting GCA, when the headache was one sided and like trying to carry a sand bag on your head, couldn't lift the head up and eyes were very light sensitive. Once on treatment all went and now get the headache when I adjust pred - I get the awful fuzzy head which I know what it is and goes after about 2-3 days.
Last week I started with headache felt like my head was an inflated balloon, if moved quickly felt dizzy but again I am trying to reduce from 5 to 4. I mentioned it to my GP as it was my annual BP check, needless to say my BP was high 191, and I'd not given it a thought (I've suffered high BP since I was 25 and it is mainly stable). I'd forgotten that being on pred used to affect BP when on high doses but that's a while ago now. So it appears that, for me anyway, whatever level the pred it can/does affect me still. The headache still hasn't left me but it will take a while for me to settle due to reducing, still got the inflated head and BP raised but not as much. When like this need to rest plenty, wear dark glasses and cut down on screen work, basically cuddle yourself. I would get your BP checked too.
Failing all of that it can be stress related, worrying about this holiday maybe, worrying about the family anything that you would normally deal with easily becomes a threefold problem when tinkering with these bloomin steroids.
I've taken medication for a lot years for elevated BP and you think that's being taken care of but it's not the case anymore with this illness. I was surprised how much my BP was raised last week and just didn't associate it with the steroid increase at the time. Thought I'd got through that. I can't make a decision without my head hurting and when I do it's wrong! awful feeling being out control. It's time they came up with treatments for the cause not the symptoms that we can all take.
Mine was 150 over 80 at the height of the headache this evening. I take 40 mgs of Atenolol. So that is a bit raised, my husband took his and it was almost the same but he’s on no meds.
When you say you can’t make a decision without your head hurting and then it’s wrong and you feel awful being out of control, can you enlarge on that a bit?
I am beginning to wonder about the way the Adrenal Glands work normally in well people and what happens to us physiologically when we need more cortisol/ Adrenaline because of stress.
Basically my head doesn't want to work, I am aware of what's happening but can't do anything about it, that's the out of control bit. I seem to have short term memory loss, yet minutes later I remember what it was, it's not all the time but a lot of the time, again out of control. I make notes each day of what I need to do and forget the note - if it's shopping for instance, yet if I do that I can actually visualise the note! How is that possible? Think I'm going mad!
It is the stress the body is trying to cope with I think. When I had my cancer I was told it was because there was too much going on and I would be okay. Now things are more settled I am like I am and would like to know why, is it just me, old age, I think not. I went to a local meet for PMRGCA the other week and the majority of people were a lot more elderly and couldn't do much for themselves, I felt like a spring chicken compared. Needless to say I came away counting my blessings. I enjoyed it for the speaker and will go again. It's not good to bottle feelings don't you think. I am a positive person and will continue to be like that for as long as it takes.
I don't know much about the Adrenal Glands, but now you've mentioned it I am going to get to know. Many thanks Jane.
I do recognise what you have just described so well. I think it’s what we refer to as Pred Head. I leave things on kitchen surfaces to remind me to do things, phone people etc. I tidy up obsessively so something on the table or counter means that I have to deal with something. I set electronic reminders on my iPad that play a distinctive little tune. I can’t remember the names of actors or musicians in conversations until far too late. We are all going mad together. I agree with you about not bottling things up and trying to remain positive. It’s hard work sometimes. 😬
Good day from Canada. I also suffer terrible migraines/headaches whenever I decrease my pred. I just went down to 11 mg. The location of the headache is exactly the same as you and my rheumatologist brushed it off and prescribed toradol and acetaminophen to take on top of the pred. I live with circulating ice packs in the freezer for when the migraines come and I am out of commission for about 3 days. They are also triggered by too much physical use of my arms(shoveling/ raking etc) so I have to limit that to very short time units. Also if I don’t have a balance of protein fat and salt in my diet but have endulged in something sugary and or heavier on the carbs I will get the migraine. Food for thought - sorry about the pun.
Of course getting enough rest is also very important. It just seems the threshold is so low for triggering the headaches. I still have a feeling that it’s tied in to the overall inflammatory vascular system. Hard to convince the doctor as you say, they treat in isolation.
Good luck to you and if you find the magic formula😉 please share. From one migraine/headache suffer to another , thank you for your post.
That is really useful Karen. I will need to look up those drugs ( aargh more drugs). Interesting that it happens to you when reducing. Do you carry on?
The days of my migraines/headaches I can’t function at all and they last about 3 days. I am presently on LTD from work as there is no way I could put in a full day let alone 2 back to back - fatigue, pain, blurry vision and headaches whenever I tip the scales too much or taper down.
I stopped the taper when I got the severe headaches and got a huge scolding from my rheum. Lectured about high dose of pred yada yada yada and told me to push through - obviously he’s never had severe headaches. He is the only game in town and has done some good things for me. I’m a bit anxious as I see him tomorrow and my pain is increased with 11 mg as per his schedule. He’s not concerned with increased CRP. Therefore I try to manage all symptoms as best I can especially the headaches. Diet as mentioned before and rest and small increments of activity are all my body can handle.
Hope this gives you some feedback. I continue to taper but get increasingly anxious as the dose gets smaller.
That is interesting and there’s learning in it for all of us. This is a new symptom for me and had it struck earlier I wouldn’t have got down to 7 mgs. It really makes you feel quite broken doesn’t it?
I looked up your headache drugs, they are Paracetamol and a non steroid anti inflammatory drug. I thought we had to avoid NSAIDs because they were extra stress on the digestive system.
I am sorry that you are having such a struggle and I am grateful that you took time to share your story on here. It helps me and I am sure it will help others. Take care! Keep in touch.
The headaches are a big part of my journey with PMR so I was very interested with your post. Comforting to know my experience is not isolated.
Symptoms for me started suddenly Jan 2017 and I tried to continue to work but as things worsened I had to see my family doctor. He did blood work and with my history thought PMR. He started me on prednisone June 2017 at 30 mg. Felt amazing for about a month and then things went sideways fast. That kind of fast tracked the referral to the rheumatologist. He tried to taper me quicker at first. It was severe headaches which always slowed down the taper. Now at 11 mg. Bit nervous as I’m getting married June 30th and I am supposed to be at 10 mg and then lower to 9 on July 1st. I am not good at lying to the doctor but I plan to just see how 10 goes and stay at that if my body can handle it at least for the week after the wedding.
Thank you for your interest in my story. No one really gets it in my circle of family and friends except my partner. No one had even heard of PMR before. Like many people here have stated we look ok just have gained weight and seem to be more “lackadaisical “.
Congratulations for your forthcoming wedding. How exciting ! I think your contingency plan for 10 mgs of Pred to cover your wedding day and beyond is very wise. With this illness even blissful,happiness is dangerous. Keep well. Wishing you a perfect wedding day and a happy,healthy life together.
Pah! To other people and their opinions. We understand!
Hi Marilyn. Thank you so much for asking. The wedding went well. I’m in Ontario Canada and it was extremely hot that day with Tornado warnings the night before. It was an outdoor wedding and family and friends helped out so much as we were doing it ourselves. Had to pace myself a lot. Didn’t want a severe headache on the day and was lucky and was headache free. I still get 10/10 pain headaches and vomiting but not till a couple of weeks after the wedding.
I kept at 11 mg and won’t try a taper till Aug as I’m definitely experiencing more pain. Looking forward to getting back to my ‘normal’ routine.
The hardest thing was to let people do all this running around on my behalf. It was necessary so I didn’t crash on the day. Feeling very grateful for all the help. Now I’m ready to sit with a book and a cup of tea and coast for awhile.
So thoughtful of you to ask.
I hope your journey is progressing well. Take care.
So sorry that you are having all these problems Jane and you have given a lot of advice. Hope you'll be able to experiment and see what works for you and I'm sure others will benefit when you share your experience . Interesting that the extra pred seemed to help and although it's not the route we want to take perhaps it's the way to go initially and see if that makes a real difference. You could just try for a week couldn't you. I know that last week I had quite bad headaches around 5pm - 8pm. I know during that time I was stressing a bit about my daughter being pregnant and traveling to see her, what I might be expected to do ( mostly in my imagination) and what I couldn't do. Also I realised that I wasn't drinking enough water. It may be that you might be feeling a bit anxious about your impending treats. Who knows really but I'm sure you'll work your way through this. Let us know how you get on. Best wishes.
I can so relate to the worry about your daughter and her pregnancy. When mine was here I was particularly worried that I would let her down by not being fit enough to do what was required. Somehow the love gives you the missing energy in the early days, that and the excitement.
Hi Jane,. are you familiar with the symptoms of occipital neuralgia? Despite my Rheumy diagnosing GCA on top of my certain PMR, I do wonder if my short lived episode of neck, scalp and odd feeling in the eye could have been ON (I've had lots of neck whiplash injuries over the years from horse riding and skiing falls and my osteopath says my occipito-atlantal joint isn't a happy bunny.) Any persistent tension in the trapezius muscle and the neck and shoulders can contribute and if your posture isn't good especially if you jut your jaw forward (like I do!) that doesn't help. Could it be that by early evening your muscles have had enough? Lying flat in bed will release a lot of muscle tension especially if you're lying on your back.
I also wonder if you are heading into sleepy adrenal gland territory? I've just looked at the circadian rhythm of cortisol release and clock genes. By 6pm ish levels are really starting to fall and by this time your blood level of pred will have reduced too. So I'm going out on a limb here but I'm wondering that since during sleep "normal" secretory activity of cortisol is minimal and continues for about two hours after waking, is your afternoon nap contributing? Perhaps the headache is cortisol insufficiency which is why that small increase in the dose of pred helped?
I'm going to research this further because I have always taken my pred at around 2am to buffer the 4am cytokine onslaught. It occurred to me that as we reach a physiological level of 7mg pred it would be better to mimic the physiological normal cortisol release time of around 8am otherwise we are inhibiting normal adrenal function and not giving the other partners in the HPA axis a chance to do their job. I need to think about this.
Finally could you try a pair of chemist reading glasses? It may rule out eye strain without the expense of prescribed glasses. Seems you have lots of homework to do .
Your headaches and timing sound a lot like me through March. Starting around 4pm and getting worse as the evening wore on, with some temporal pain (description of my headaches in previous post). Mine also cleared on going to bed, and next morning was fine......until the late afternoon again. Obviously the first fear is GCA, and I think that tenseness made it all worse. I got some relief from a heat pad on my head! (Heat pads help my PMR pain) But no relief from analgesia. One evening I was so fed up I took 1mg extra pred, and it did ease it a bit.....which just added to my thoughts of GCA. GP visit, he said tension headache (I tend not to believe much he says!!) Optician checked thoroughly, nil found. He’d have liked me to get bloods, but no point for me. Chiropractor said the pain exactly replicated the nerve route, and therefore was ‘tension headache’ (ugh! You mean the GP was right?) GP suggested Amitryptylline, but I wasn’t keen due to dreadful dreams and dropping BP from previous experience. Anyway, chiro spoke a lot of sense and from then on I chose not to get ‘bugged’ by the headaches, as I concluded they were not GCA. The headaches reduced a wee bit over the next few days, and then after a week I had hands on chiro, and the headaches improved no end. Have had 4 chiro sessions now and don’t fear that evening pain anymore, as it’s virtually eliminated.
(Also improvements in L shoulder pain (latissimus dorsi muscle misbehaving) and R hip pain (still working on piriformus). So from being on the point of feeling I needed to increase my pred, I’ve actually dropped from 9 to 8 (and that last drop with absolutely NO withdrawal pain, which still weirds me out!))
That is so helpful Soraya. This is almost exactly my pattern. Far from my head being painful to touch I would really welcome some manipulation in the head and neck area,it feels unbelievably tight and tense.
Our symptoms can be so hard to read sometimes and you’ve just illustrated how a misread can spoil a good taper. I have been slow but sure from 20 to 7 mgs and then hit the buffers. I get a brief evil pain in my right shoulder, fatigue and these headaches but my sense is that PMR is actually under control. I can touch my toes for goodness sake!
Well I hope it has helped a little. I was getting really ticked off with the daily recurrence of head pain.
Tight and tense is it. I’m sure it increased my lethargy/fatigue. Chronic pain just adds another dollop on top of PMR and pred fatigues. I do feel less fatigued since chiro. He fully admits that he can do nothing for the PMR. But by trying to get me into some sort of symmetry, with a body in balance, and muscles doing what they’re paid to do, rather than the tense & tight reaction, then it just leaves the PMR & pred for me to deal with. And I do believe he’s right. I’m closer to the real me than I’ve been in a l-o-n-g while. Less pain, less fatigue, a wee hint of get up and go has returned (all in paced moderation of course). I’ve still got the adrenal zone to tackle, and that can’t be dismissed, but am more optimistic now, and pleased that I found another way through rather than increasing pred....at least for now.
I have found on those days when I can avoid the afternoon nap then I get a better night. I can sleep 12 hours round, but that’s good as it leads to a better day. Didn’t sleep at all well last night, no idea why. I find something on the radio to listen to until I drop off, I figure I’m resting even if I can’t sleep.
Fresh air and a walk during the day I think help me. I also cut caffeine out a year ago, that def made a difference.
That makes a great deal of sense Fiona. Thank you for explaining so clearly on here. I have had a broken shoulder in recent years and also have cervical Spondylosis. The sleepy Adrenal gland theory fits too and would explain this new symptom. I am taking Pred later in the morning than 8 am to separate it from the Thyroxine I take first thing on an empty stomach.
Did your Rheumatologist put you on a GCA dose of Prednisalone?
Just changing the subject but I've woke up last night with painful jaw! I've only had slight twinge I think this is theGC causing it and my shoulder and rib cage is hurting this morning I am tapering down until I see my rheumy but that's July at first each time I go downi get a few rough dayS the settled so I don't want to increase pred I've gone from 40 m and now on 12&half, so I have to stay on this amount till I see him anyone got advice please
If I read your previous messages right you are 13months or so in? It sounds like pred withdrawal after dropping if you get a but better after a few days. If I were you I would stick at current dose and if pain get worse increase and contact rheumy. You could try the chewing gum test. Not sure of it's efficacy but might help you decide what to do.
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