Having caught up with other members posts, I felt perhaps I’m just feeling neurotic and should just get on with it. I also wondered where all the familiar names had gone, until I realised that I was on Health Unlocked, but not the PMR site. Felt frustrated too at always having to sign in and yet my password not accepted, and sometimes give up.
Anyway, having PMR, diverticulitis, osteoporosis I tend to pay attention to the condition dominant at the time. Recently it’s been diverticulitis, possibly a flare as I experienced the symptoms and effects from the time of my 2013 diagnosis . However at the same time I have been experiencing painful backache, all over aches, (+ stabby pains, small headaches with tenderness and chronic fatigue and little motivation.) I have sweats but no temperature, and a small swelling in my outer ear. (From using thermometer incorrectly?) I have itchy skin, had rashes and have lost weight too, despite eating all the time.
I haven’t seen a GP for some time, since I was sent for a scan. The GPS in my practice have always told me to keep reducing my steroids. Am now on 1 mg when I should have been off steroids a year ago. Have followed Dorset Lady’s reduction plan, and have repeated occasional months to get to where I am now. I haven’t contacted my rheumatologist for a year, but he would tell me to reduce. With his plan I should have been off steroids long ago. He didn’t think I was a typical case.
I haven’t had the energy to go for my walks lately, which helped with the pains as long as I kept moving. Despite staying in I fall asleep immediately when I go to bed, and wake up very early but not refreshed.
Finally, apologies for feeling somewhat sorry for myself just now, when others are far more stoic despite their conditions.
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ClarkB
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I realise that I have already posted something similar a while ago, so will re-read any comments. Apologies for that. Don’t know where I am!
Hi, you ended up in the weird alternate universe if positive well being did you?
I think it is an enormous task trying to keep several conditions stable, mainly because they rely on certain things being in place and often the stability is easy to.mainintain until one pokes it head up. It does sound like your adrenals arent contributing much at all. Have you had a synacthen test before the pandemic?? You need to consider with your Dr what the strategy for this stage of reduction is going to be if you can't get a test done. I think you need to speak to your Dr at the very least. Hopefully someone more helpful will be along.....I am trying to get all my PMR, diabetes, fibro and thyroid ducks in a line and know how difficult keeping a balance is. But please speak to your Dr.🌻
Thankyou Poopadoopy for your suggestions. I had never heard of a synacthen test. My last visits to the doctors did not involve Polymyalgia, as I went concerning other conditions on each occasion. My last blood tests were in March with CRP normal, and ESR acceptable, no action.
I am trying to avoid visits to the surgery, and they are only taking phone consultations, except for emergencies.
A hospital appointment was cancelled, but this was unrelated. It must help when you have some medical knowledge. Thanks again!
My recent GP telephone, consultation unleashed a whole raft of help. You have even more reason than I did. Please book one and make a few bullet point notes for yourself to get the most out of it. You don’t sound very well at all and if my experience is anything to go by, GPs are interested. It helped me to book on line as there was an opportunity to outline my main concerns. Do it now!
Thankyou Jane. I know it sounds silly, but I tend to become lost for words with a GP call, despite making notes, Sometimes though, I feel that they don’t know what to suggest. For Polymyalgia the advice has always been reduce, and with diverticulitis, an antibiotic where I didn’t notice a difference after taking a course.
I’ve also recently had a lot of stress, which again I feel can immediately add to how I’m feeling physically.
I know exactly what you mean, particularly with multiple conditions and GPs having the tendency to talk rather than listen. Your current Pred dose is negligible to your overall health. You are very clear when you write it down. I expect that your doctor is a bit paralysed because of the potentially corrosive effect PMR treatment has on your Diverticulitis. Yet your body is alive with symptoms that may or may not be related to PMR. I wonder if another antibiotic could be tried for your DV? I even wonder if this could be an atypical Covid 19 presentation? What do you mean about hurting your ear with the thermometer? Could you not have an ear infection?
You don’t sound in the least silly or neurotic. I am sad to see someone else whose self esteem is being damaged by being misunderstood by the medical profession.
I ration what I present my GP with. Like you I prioritise what I discuss, even if it means several appointments. The weight loss alone should be ringing alarm bells.
It needs someone more techie than me to sort out your access to the forum. You may have to delete your account and start again. Just like your relationship with your GP surgery.
Let us know how you get on. A different doctor can make all the difference or back to the Gastro Specialist. Best wishes Jane x
I replied at length to your interesting and informative message last night, but didn’t send as I was very tired and thought I would complete it this morning. Unfortunately my reply had completely disappeared, and I realise that I must begin again. I currently have a headache, so will try again later as there were several points which I wanted to mention. Brenda x
I somehow managed to get on here this morning without having to go through another sign in/ forgot your password obstacle!
I was wondering how you found that you had GCA after some years with PMR. I had assumed it came at the start if you were going to get it. Does raising the dose of pred affect you in other ways? I am afraid to, due to my osteoporosis. I only take calcium supplements and never Alendronic acid or similar things. (Never remember names).
Anyway I hadn’t felt well since I attempted to reply the other day, except for Saturday. Unfortunately I overdid things because I felt that little bit better, and then went back to square one. I just realised that Chris Packham is on at 9.00 with his live broadcast, so had better post this before it disappears like the last one! To be continued....
I had, had PMR for 4 years and I was down to 3 mgs when I developed a new headache. I had no other GCA symptoms but a recent Ultrasound Scan had showed large Cell Arteritis in my armpit. The other factor was my difficulty in getting off Prednisalone entirely. My eyes are often strained and painful and I was awaiting an Opthalmology appointment when lockdown happened. I was feeling unwell.
I am afraid we are never out of the woods as far as GCA is concerned, especially if we have the closely related PMR diagnosis. We always have to be vigilant for the symptoms. The Ultrasound was a blessing really. I had a head MRI that discounted other headache nasties. Apart from insomnia the 30 mgs of Pred I now take has made me feel generally better and after several days the headache is less. My last 2 DEXA scans were encouraging and I will seek another when we all get through this. Nothing would induce me to risk my eyesight.
I hope this is what you need and I hope you caught Chris Packham!
I don’t like to miss Chris and especially now that he’s at home with stepdaughter Megan, and his poodle puppies. She is a natural.
I know what you mean about not wanting to risk your eyesight, even though it must have been disappointing to have reached 3 mg and then up again. It is a special situation though. Do you have to take more than calcium for your bones?
April last year I had double vision, headaches etc and rheumatologist thought it didn’t sound typical for GCA. I had a CT scan which was clear. My double vision was down to my lazy eye not being corrected as a child. I had to have a prism fitted on to a lens of my specs which helps. Last year at the end of April I was on 8mg of pred, and all the various pains were no different from what I have now at 1 mg! The only difference I felt that pred made , was in that magical moment when I was unable to lift my arm and full of pain, that 20 mg did the trick. Gradually after then there seemed no real difference in whatever the dosage I was on. I was told my last ESR &CRP tests were ok./acceptable.
Diverticulitis had to take a back seat (in my head) as PMR was the current culprit. However tell-tale symptoms returned that I could attribute to diverticulitis. I think it’s them that are causing my current state along with stress. (Think I told you once about my son, now self isolating with no company and ocd).
As far as dexa scans go I have nearly two years to wait for the next! As for Coronavirus, my temperature has stayed normal for me, and I haven’t been mixing with anyone recently. Order all provisions online and haven’t been in a shop for ages. Try and follow all the guidelines but still amazed at pictures of people ignoring them all!
Please excuse any peculiar words that may have popped up, that are not my peculiar words. Why does predictive text think it knows best!!😀 X
No peculiar words. Yes, I think we talked about your son, it must be very challenging for him, send him my best.
No point in extra calcium / Vit D supplements, enough is enough.
Your PMR symptom picture is puzzling. The relief at 20 mgs I can relate to, but no difference in symptoms between 8 mgs and 1 mg doesn’t sound at all typical. What “ PMR” symptoms are you troubled by now?
Thankyou Jane. Yes it is challenging for my son. He’s too afraid to go out even for exercise, and doesn’t see anyone face to face.
My PMR symptoms as I see them, are aching limbs, stabby short pains in various parts of body, tender scalp and painful headachy areas, but not severe, sweats, fatigue. Some of these might be part of the diverticulitis symptoms too. Some of these symptoms go back years. PMR diagnosis was given, when I had typical symptoms appearing overnight, of being unable to lift a painful arm and shoulder. Sorry if I repeat myself from earlier replies!
Your story reminds me of my frustrating journey to get a diagnosis ( PMR) it went on for longer than I care to remember. Lots of tests for things typical for my gender and age group - all clear. Me, giving far too much muddled information in an effort to be helpful. GPs getting set, resistant faces when I walked in. The sheer elation upon diagnosis and miraculous treatment ( Pred). I found this forum and was completely educated by it. My new GCA diagnosis was merely a confirmation of what I knew, already. Stick with us and watch those headaches, mine were dull, low level headaches at first. They mean business now. Pressure helped my tender scalp which is contrary to the painful to touch/ brush your hair description. We just have to persist.
I was worried that my quiet son was not going out at all. He lives behind Edinburgh Castle in the medieval streets ( at Uni) he was spooked by wraithlike figures occasionally gliding by in masks. I was brought up in Edinburgh and I remembered a magical place I used to go with my protective Alsatian, Judy. It was a long leafy walk by the River Dean that travels along beneath the level of the City streets. I described it to him and he went. Practically deserted and beautiful, he even found the statue of the Greek Goddess of Healing Hygeia. Now it’s his place and he’s out! Sometimes you can tap into the little boy in them. X
Hello Jane, I wasn’t well for a few days, hence replying now. My headache mainly disappeared although my scalp still tender at times. On top of everything was stress concerning my son and his mental health issues. He’s in self isolation in a flat, doesn’t go outside except for one walk to the doctors where he dressed in mask, goggles and a hood. With his mental health issues of OCD and anxiety he finds it difficult to cope. I order groceries online for him, and he can spend hours cleaning them.
I was pleased to hear that your son is now in Edinburgh, and these times may be difficult for him but the spot you described does sound magical.
I expect you’ve done all this. Anxiety UK seems to offer advice for people in your son’s situation and a site called Young Minds. I couldn’t make it link for some reason. There are blogs from sufferers who have devised strategies to cope and on-line resources so that fellow sufferers can make contact with each other. This may lessen his feelings of being the only one. X
It was completely derelict in my day. It looks quite fancy now. Still not well known. You can join Edinburgh at various points via steps. The river used to stink 😂. Good for minnows and sticklebacks though.
There was a big hold up on the ring last time we drove up to Rosyth and we took the pretty way from Musselburgh! I had never been along the front at Leith before - looked a pleasant place for a wander and a drink looking at the river.
It must be very difficult with one thing I blurring into another. I have to say 1mg is diddly squat so quite why a doc would hassle you to stop quickly I don’t know, perhaps they know something I I don’t. At the very least it is worth having some basic housekeeping bloods done, including HbA1c for blood sugar and vitamin D because both of these being off can make you feel dreadful. I’d also ask for a Synacthen test because poor adrenal function can make one feel like a complete shadow of oneself.
I do find that when I’ve seen the doctors, and they all say that I need to get off the steroids, I come away with that in mind. When I’ve spoken to a friend and explained the pain, she told me that I mustn’t dismiss arthritis, because she wakes up feeling the same every morning. I’m not sure I know what housekeeping bloods are, but I had several blood tests done in early March, and was told by receptionist that they were acceptable , with no recommendations. In 2013 I had low blood sugar, and was given Fortisips. You’ve probably gathered I don’t really have the first idea about medical matters!
Sorry, by ‘housekeeping bloods’ I just the basics meant checking kidney, liver, white cells (needed for infection), red cells (carrying oxygen), platelets (one of the things for clotting), inflammation markers. Others might be added in. Quite how stopping 1mg Pred is going to change the world and be a cure for all your symptoms I don’t know and just sounds lazy on their part.
Sadly it sounds like you need to become a bit more clued up with what they are doing and why do you are not being fobbed off. It might be worth getting a list of what bloods you have had so you know what is being checked even if you don’t understand all the numbers.
Have only just seen your post. Snazzy. Unfortunately I am not very bright when it comes to anything medical. I can never remember what I’m told, and would I understand it anyway? I will make a note of what housekeeping bloods are as I simply had no idea. I have got used to taking 1 mg of pred along with my blood pressure tablets , that it’s only when I feel awful I start thinking about it again. Haven’t been in touch with the rheumatologist for a year, so will email him. I only saw him initially as I had a private appointment due to a too long wait for an nhs one.
When I do eventually get to the Surgery again I will ask for some printouts, as I can’t memorise what they tell me. My friends always seem so clued up about these things.
No, I was only given Fortisips in hospital in 2013. I thought they were 40 sips and thought that was how many I had to take. So sickly. That’s how ignorant I am!
Don’t beat yourself up and call yourself names. It’s not unusual for people to remember about 50% of what’s said in a consultation. Best to either take someone with you are try to take notes. Start learning by getting printouts and look things up and soon you’ll know more than you realise. If you don’t understand something a doc says, ask them to explain. It’s not that you’re thick, it’s that they haven’t managed to present their information in a way a layman can understand. That’s not your fault.
Thankyou. I realise I need to have a different approach, I think it depends on who I happen to see too, as I am more at ease with some more than others.
True. I feel better when I’m on the go, unless I can’t be physically. If it’s aches and pains I find it best to be out and about. During the last week I didn’t feel like it, although went for an uplifting short walk last night. I feel cold too with cold hands and feet, yet have sweats in the night. I then reach for my trusty thermometer which shows a normal temperature.
It must help I imagine, that being a nurse, you can have a good idea of the problem when you’re not well?
Only to a certain extent. It is much trying to work out what’s going by gut feel than anything else when there’s a lot going on. It does help with jargon though but hasn’t helped with doctors being more respectful.
They often feel threatened by other healthcare professionals - and some feel a need to establish their superiority!
One way to be sure you heard right is to record the consultation - I know several who do it if they can't take a scribe with them. Most doctors accept it when you explain you can't remember and need the aid. But you really do need to tell them.
I always ask to be copied in or sent the report if I have tests etc. So far only one said it couldn't happened, but I got a look at the results anyway. I didn't understand most of it but I Google words and phrases all the time. I had never heard of ESR or Crp, t scores etc or PMR when diagnosed. I had heard of temporal arteritis but not GCA. I am rubbish during appts but am teaching myself to get better at them by doing lists of questions or issues I have. It helps me remember what's been said.
After flaring the first year due to a too fast taper, I used the info on here to start trying to pick my way through these things! Starting 5th year next month and most days I still learn something from everyone's experience of these conditions and how their drs and rheumies treat them, and the replies people's questions get.
I never knew that PMR existed until I got it, and neither did my friends. They asked what it was exactly! One doctor thought my list was a good idea so that I could remember the issues and save time. Another saw me with my piece of paper, and before I could say anything, told me there was no time for that!
Everything I have picked up has been gleaned from this site, and so appreciative of all the suggestions and advice.
We all feel sorry for ourselves sometimes. We ARE human! We've 'lost' the way we used to be and how we lived and some feel they'll get there some day. I am more realistic - I have had PMR for 8 years now (and I'm 8 years older). Life has changed and it won't return. Therefore I have started a 'new' life (less worrying, less 'expecting better', accepting how it is) - can't be all bad!!!💥💥
Sound advice! I think I'm someone who thinks I should still remain the same as I used to be. I live in the same house, go for the same walks, same type of holidays and can’t understand why I feel different. It doesn’t help that some of my friends and contemporaries don’t feel beset with the same problems, and are as fit as fiddles. I then feel like a hypochondriac! I will try and hang on to your words Constance. Thankyou.
I'm with Constance after 6 years with PMR. Life is good, but really different than it was before PMR.
As they say "You are not Alone". Don't be so hard on yourself. I feel like a hypochondriac a times and then give my head a shake. Our bodies are complex and PMR is complex so crazy things happen on a regular basis depending on how the two combine on any given day, week, month......
You are struggling with a number of conditions with overlapping symptoms which are tricky to figure out at times. Don't hesitate to come on here and say what you need to say. No apologies needed.
About losing posts after spending a lot of time typing them...that happens with me too. So frustrating!! Now, when I want to say something that requires a lot of thought I type it in a word document and then cut and paste it on the site. If you're unable to do that, then consider writing it out so at least you don't have to rethink the whole thing.
Re: osteoporosis, I have that in my shoulders, back, knees and base of thumbs. It's only minor osteoporosis, but I find taking 8 hour Tylenol (acetaminophen) before bed reduces the morning aches and pains caused by that particular devil.
Please consider doing as others suggest and contact you GP for further investigation and talk about the synacthen test. Some of your symptoms are similar to those of adrenal insufficiency.
Poopadoopy and Snazzy have said what I was going to suggest - however slow your reduction from 5mg was, your adrenal function hasn't been able to keep up. And let's face it, everyone is struggling to adapt to a very different way of life at present. I have a great desire to sleep and I haven't reduced my pred dose so that isn't to blame.
I was originally on 20mg for a week in Jan 2018, then 15 and yo- yo ing from then on, and it not always making much difference, either way.
I think you’re right about struggling to adapt to a different way of life. Initially it was ok, going for walks in lovely weather and scenery. Now, due to how I feel at present, not really going out, listening to too much news, no energy to do all the things I intended to do in lockdown, brings it all home.
I've 'almost' stopped looking at the news and reading newspapers (ie I only listen to bad news once a day)! Life's too short and I can't change anything any way.😏
I have PMR and Seronegative Polyarthritis - that's enough to keep me "occupied" every day. Enjoy what you can! Cope with the rest! Guilt not allowed!😂😂💐🍀🍀
Sometimes I’m fine and switch off from everything, read, chat on the phone, watch TV, although I haven’t been able to get into doing all the jobs I was going to do during this lockdown. I haven’t been motivated to do some things either from lack of mental and physical energy. I find that I can switch from happy and positive to gloom and vice versa in no time! Too much thinking!
It is also a side effect of Pred. I can feel perfectly happy a suddenly a black crow lands on my shoulder. I see him as something quite separate to real me. Didn’t we used to talk about the Dragon and wasn’t there a bear? I’ve forgotten, imagery helps me though.
Ah yes, juggling multiple health issues can be a challenge. You’ve done well to reduce to 1mg, but perhaps got there too quickly. Your current dose is so low it really shouldn’t be too concerning for any rheumy, and I’m afraid their insistence that you should be off of pred altogether is common direction from rheumys who are not living with these conditions. Did feeling unwell correspond to you lowering your pred dose?
Others have made some good suggestions re tests to get to the bottom of things.
Thanks for your comments. I can’t say that lowering the pred dose did necessarily correspond to my feeling unwell, but I really don’t know. Diverticulitis has also affected me recently with shakiness, and general weakness, My rheumatologist only suggested ESR and CRP tests.
My diverticulosis is under control....I cook a pound of prunes in just water. Keep covered in my fridge and I eat about 2 prunes each morning. Delicious way to solve the problem.
I take liquid Symprove every morning , as suggested by my doctor. I think I should be more strong willed and look at my diet for diverticulitis again. I’m not disciplined in this area. Of course it might not be due to diet. I’m vegetarian but virtually vegan.
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