I have been to and fro to my GPS surgery every week sometimes twice in that week ,as well as my body hurting all over I haven't been able to walk at all .The pain has been unbearable. My only option has been to go up on the steroids , I was on 13.05 mg before the Flare but today I am up to 18mg and the pain has eased considerably . I still have some pain in my left upper thigh going to the knee and down the back of the leg to the heel but more bearable than what it has been recently. It was pointed out to me through the Forum by PMRpro that I may be suffering with Myofascial Syndrome which my GP thought was possible but no tests have been done .. He referred me to my Rheumatologist to get help from a Pain Clinic but I am still waiting for an appointment . I hope to get in touch with an Acupuncturist next week if I feel better as my exhaustion levels have been Sky high so I'm worried that any further treatments might bring on another flare. I so want to get off these steroids after nearly 10 years and I feel there is no hope for me. If I go up on the steroids and get more active then I MAY be able to lose some of this horrible weight I've put on OR I start cutting back down and stay on the bed for most of the day unable to move and saying sorry all day for having PMRto my wonderful Partner because I am so tired ,tearful and Snappy.. I give up with my GPs as whilst I had the Virus I had a UTI and my GP sent off my specimen and he said to me that he doubted it would be worth while as my tests seem to come back Negative although I always have lots of symptoms. I was feeling so ill that day that on the way home I just cried and thought why bother as they don't believe me.. I haven't bothered to telephone to see if there is a result with the urine test. This condition is just unbearable .. I've Had Enough .. Thanks for putting up with my moans. Trish 29
What can I Do?? Why does nobody understand that I... - PMRGCAuk
What can I Do?? Why does nobody understand that I do feel ill most of the day and have been fighting a Flare/ Virus for over a month.
I suffer with frequent UTI's and they can make you feel awful, they also can raise the inflamation [ ESR ] so you are not only dealing with the PMR you also have the UTI,
I have chronic kidney disease, with high blood pressure, which is probably due to long term use of steroids [ 14 years ] for GCA/PMR Please check your urine result, you may need antibiotics to protect your kidney's. And you need to see your Rheumatologist.
I felt just like you last year, I was so depressed and all due to a bad kidney infection, so do check your urine results.
Take care
Bowler , I'm suffering repeated UTI's and raised blood pressure too . Along with the PMR it's most depressing . Trying to be positive and looking on the Brightside can also become tiring when you don't feel that way. Take care. x
Yes UTIs can be very distressing, and as I have stage 3 kidney disease it doesn't help with that. I am slowly getting better from a recent flare of GCA. it never ends does it.? and it can get me down sometimes.
Lets hope we have a nice summer
regards bowler
Hi Bowler . I feel for you getting the UTIs ..it really must get you down with the Kidney infections as well. I hate feeling so poorly most of the time and long for the better moments which usually come later in the day . I can't seem to shake off this Virus but I must be kind to myself and rest when I can . best wishes trish29
Thank you bowler..My GP did put me on a 5 day course of antibiotics. Nitrofurantoin 100mg which I finished days ago.My blood Pressure has been high through the Virus and I can't get shoes on due to the ankles and feet being swollen although my GPWasnt concerned when I showed him. I will phone my surgery on Monday to see if there is any results. Tank you for caring. Trish ( Pat )
Trish Pat. I do hope you start to feel better soon . I wish you could find a more sympathetic helpful GP who realises you're not a malingerer and need care , comfort, peace of mind and some promises that you'll be on the road to recovery. Do you have a lot of stress in your life as I'm sure we can't make good progress when that is the case. take care , stay strong and keep your chin up. xx
Thank you Greensleeves for your Kind words of support .. I try to avoid stress if I can as I know it is not good for PMR .. The only stress I get is when I come away from the GPs Surgery feeling utterly useless .No this virus came like a bolt out of the blue and it doesn't want to leave me. I must be patient as I have had some better days this week and the weather has been nice . Maybe then I can see about reducing the Prednisolone slowly yet again . Its a while since I have seen your name on the Forum and I hope you are getting on OK . I have had terrific feedback from this Forum while I have been poorly . Have a lovely weekend. trish 29
Dear Concerned. Thank you for your comment .. I will look into this but I am so careful with my diet as I have had this condition so long now that I am careful of carbohydrates and sugars etc .. That was my first UTI infection in years and I do believe its down to a Virus.. This is the 1st morning in a long time that I have felt better after a better nights sleep . I was obviously right to go up on the steroid but will tell my GP next week as i dont want to stay up on them for very long. Best Wishes. trish 29
Trish - there are no "tests" for myofascial pain syndrome. The best person to see is a physio or a massage expert, both of whom can FEEL the trigger points and then work on them - and a private physio appointment will cost about the same as acupuncture and probably achieve a lot more.
I'm not trying to trump your pain cards - but I do understand exactly how you feel - nearly 2 years ago I had a mega-flare+ with new diagnoses on top of PMR, I was in hospital for 3 weeks with a couple of episodes that should have had me in ICU but it was full, left me with a daily suitcase full of meds, on crutches for 9 months and struggled to walk 200yds even by the end of that time, I hurt all over and felt so ill I couldn't believe it. My GP just gently said "It WILL get better, be patient..." I remember sitting and crying in her surgery at the time and I really wasn't sure I believed her.
Two years on I am relatively fit (for PMR!), can walk for 40mins - and back after a good rest, have lost most of that pred weight and am getting that identity back - you know, the one that gets lost behind PMR and pred????
What I'm trying to do is say there IS hope and a light at the end of the tunnel. It's just there's a bend in the tunnel and you can't see it yet. Perhaps it would be easier if it could be seen in a form other than "Dear lord, hasn't she let herself go..." which we just know people are whispering behind our backs.
I've just posted this on another thread - maybe it will help someone else a bit with some aspects of living with this foul illness.
"I think the main lesson for anyone with PMR (or treating PMR if it comes to that) is that we must be patient. If you rush at doing anything when you have PMR it will turn round and bite.
Learning to do things in bite-sized chunks, resting frequently and adequately between jobs and learning to know "That's enough for now" will make a massive difference to your life. It helps to be able to say "No, not at the moment..." as well. If you keep pushing at what you do you will just exhaust your muscles and it will take even longer to recover. If you just do so much, rest and do another session you won't get to the exhausted stage. It may sound counterintuitive to say "Rest in the afternoon if you need to" - but by planning a regular rest period in the afternoon (usually, but some people prefer late morning) you will be able to continue to function even in the evening and be able to go to bed at a "normal" time. It isn't just the muscles - it's your brain as well. No-one functions as well mentally when exhausted and in some cases you can become downright dangerous - driving, for example, or working with machinery. Or you say things you may regret later.
Google the "Spoons Theory" by Christine Miserandio to find a very apposite explanation of how we need to manage our resources when we have a chronic illness. It doesn't take long to learn how to juggle things best - after all we did it when our children were small, or when we first had to manage both ful time work and running a home. But you have to remember the lessons you learn, there is a definition of insanity: repeating the same action and expecting a different result!
It isn't "giving in" to your illness, it is "managing" it."
Trish
I echo PMRpro's advice to see a good physio - one who understands PMR and knows not to pull anything around but just use gentle massage and/or heat treatment. It worked for me but unfortunately I can't point you in that particular physio's direction as he has disappeared from the Community Centre where I saw him and staff have been unable to make contact with him. Are you still seeing your osteopath? I know you have great confidence in her but it does seem as though you are needing a different sort of therapy that works at the moment. Glad at least to read this morning that you have had a better night's sleep.
Thank You Celtic and EVERYONE ELSE that has answered me .. Celtic I will telephone Reena my Osteopath next week to see if she knows of a good Physiotherapist as she has already said that her treatment might not be suitable for me ..although the increase of steroids have helped they have made me heavy headed but i would rather have that than the awful pain that ive been through .Ive managed to get up for most of the day today and I've had a lovely visit from my youngest son and granddaughter which was nice .I've been spoilt rotten with Mothers Day Cards and presents . That's cheered me up . Thank you all for your kindness .. I've just had a nice rest so I can hopefully tackle the rest of the day and hopefully tomorrow morning I can get up and go to a Local Garden Centre with my Eldest son and Daughter in law and Grandchildren to have a Mothers Day Breakfast which I am looking forward to. From trish xx
Please explain to me what fructose has to do with the price of butter - or in this case, production of insulin? "Because fructose does not stimulate insulin secretion from pancreatic β cells, the consumption of foods and beverages containing fructose produces smaller postprandial insulin excursions than does consumption of glucose-containing carbohydrate."
Dear Trish 29,
I am having an absolutely awful time too - so you have all my sympathy. I too have been to the GP several times and also twice to the A & E for really bad attacks of severe cold body and giddiness bordering on collapse. In all cases sent home with 'nothing obvious'
found. Why is it that we feel that no-one is listening to us. I have the days and days in bed when I feel so down about myself but I have to rouse myself to look after my husband who has Alzheimer's - not severe as yet but is not able to fend for himself as such. Who looks after the Carer ? when the Carer is ill - I cannot rely on my husband, I asked the Social Services to come in which they did for 4 days be withdrew after that as he would not allow them to look after him. Needless to say he does not look after me at all.
Now I've got that off my chest, sorry for my moans. Hope that you get a good day now and then. We have to keep going don't we?
Hi frangimini .. I feel for you because 18 years ago I was caring for my late Husband that had terminal Cancer and my late Father who had Alzhiemers and Dad was only happy when I was around . I was in my late 40s and didn't have PMR then but I found it all a strain ..I lost them both 7 months apart and it was a shock so coping with your PMR on top of your husbands condition must be so hard for you . I hope you get more help in the future but its difficult if hubby doesn't allow. Moan away as much as you like to me just post me when you need to .. What you experienced at A/E was awful .. I've had a hospital bag packed ready for a long while as I felt so iLL but what's the point of going there as when the word PMR comes up no- one wants to know. Keep Going. trish29
Thank you Trish29 - I am so sorry for your losses but it really does help to know that someone else understands the external stresses and strains which are added to what is already a burden. Keep up your posting we are all here for each other.
My rheumatologist put be on sulfasalazine 3 months ago to get me off steroids. It takes 60 days for the levels to build up in the bloodstream . It keeps the inflammation down. If you can tolerate sulfa drugs, it may be an option for you.
Hello honeyadamz. In the past I have been on sulfasalazine but like many other medications I haven't been able to take them due to upset stomachs and migraines etc. trish29
Did he explain why he was using that? I have read every review of trials with other drugs to reduce pred use - and sulfasalazine has NEVER been mentioned in the context of PMR. Does he think it may be another form of inflammatory arthritis? A UK rheumy wanted me to take it. I was about to move to Italy so going out in sun was going to be an issue and anyway I had to arrange monitoring by the local hospital. The local rheumy here is adamant PMR means pred at the moment - no real alternative. Not that I mind.
Dear Trish29,
Like you and frangemini I am also having a terrible time with nobody listening so completely sympathise. Please never apologise. We are all here for you.
My shoulder pains are relentless, burning and severe for the past few weeks although the left improves with the pred a couple of hours after dosing. My GP had no interest when I saw him last week and told him I think I have a rotator cuff injury as the pain on the right shoulder blade will not go away and hurts so much when I move. I can't even walk as it hurts when I do. He said he would chase up a rheumatologist appointment, having said he referred me in November, but when I rang the hospital the other day I was told they had only just received a referral letter from my GP. I tried Bowen last week but it didn't help. I too am tearful and snappy and feel the medics don't understand what we are going through.
Regarding urinary tract infections, I test my own urine about once every 6 weeks because the steroids prevent the usual burning/warning. When I tested on Monday the strip showed obvious infection so I took a sample into the surgery. When the nurse tested it she said it was negative but when it was sent away for culture there WAS an infection there. I had to wait 5 days for an antibiotic prescription and meanwhile my PMR flare has got worse. I already have a damaged kidney (extensive scarring) so am horrified I was left with this infection - the nurse needs to go back to school! I am hoping resolution of our UTIs will help reduce our overall pain, Trish.
I waited 8 days before my surgery called to say I had a UTI I have stage 3 kidney disease !!
Hi bowler. Its terrible isn't it ? I know they are busy but my Medical Practice has quite a few Doctors who have usually got a Medical Student in with them. I will say that I managed to get emergency appointments quite easily but I was surprised that they didn't do any Blood Tests anyway we just have to struggle on with this Rocky Road of PMR and the support I have had from this Forum has been AMAZING . Thanks to you all Trish 29
That's really bad! It seems the days are gone when we would have been prescribed antibiotics while waiting for the results.
I dread to think what is going to happen to our NHS .GPs etc., in the future, it all seems to be going downhill from the stories I read.
I'm going to post this to each of you or heaven knows how many of you will see this - but if you are having recurrent UTIs and have renal problems anyway you need to see a urologist. I had problems and had what is called a "urethral stretch" (I've now had 3 over 30 years) and it worked brilliantly each time. The infections can be caused by the bladder not emptying properly - and PMR just makes things worse because the bladder muscle isn't as effective as it should be. Another possibility is long-term trimethoprine but there is always the risk of resistance of the bugs to antibiotics and then we really will be up the creek without a paddle so that's why they do cultures first!
You're right PMRpro. I have been told I have incomplete emptying. Because I am allergic to trimethoprim I was put on nitrofutantoin, one daily, as a preventative. This was before I developed PMR. I had horrible side-effects from it - muscle pains all over my body and when the pains went away they stayed in my shoulders so I have a suspicion this horrible antibiotic triggered my PMR! A stretch would have been better.
Ask if you can have one/tell them you would like one! Infinitely preferable to abx ad nauseum.
The first was after my second daughter was born - in Germany, outpatient appointment, cystoscopy and then done with no pain relief. The second was 2 years ago here in Italy, much the same but the Italian surgeon didn't mention the pain until he was causing it and I squealed!
The UK was very luxurious: day surgery, examination first and then the decision as to what he was going to do and the explanation. I'd have to wait a bit for the local anaesthetic to take - or did I want more than that? I was surprised, explained the previous time and he did it with no local. The nurses were standing there with their legs crossed - couldn't believe I was OK without! They'd never seen it done like that. I pointed out that the pain was no worse than period pain (for me anyway) and it certainly didn't last as long!
No problems since - except if I am out a lot of the day and don't drink as much as usual I get some bladder/urethral discomfort. But I'm fairly sure that is from the calcium tablets forming grit - if I drink plenty no problem.
It can't be any worse than PMR pain. I think we can withstand anything after that!
Hi Badgergirl. These stories are just incredible .. I'm still waiting on pain clinic but don't hold my breath that the appointment will come through . When will these Drs etc realise that WE don't want to keep popping the steroids, I've only gone up this week because I can't cope with the pain any longer .. I hope you feel better soon. trish29
Thanks Trish29. I hope you feel better soon too. I am on the verge of increasing the steroids too as the pain is relentless. Two weeks now on 11.5 mg and it's getting worse as time goes on. I wonder how much longer I should wait for it to settle. Badgergirl
If it is getting worse it is unlikely to be steroid withdrawal - the inflammation is getting away...
Do you think it might settle? I am wondering whether to wait or to go back to a higher dose. Thanks
If it isn't fading after 2 weeks I have my doubts it will settle now. And the longer you leave it the more inflammation there is to get rid of. That's the trouble with waiting it out - if you have reduced too far you often have to go back up further than where you were to control it and have lost all the good your were trying to gain.
Oh bliss! At last I have had a relatively pain-free day so far. I can feel twinges now but I am grateful to have had no pain up until now.
Hi Badgergirl .. I am so pleased that you have had a better day and your pain level sounds better than mine.. Because I had to go up on the steroids over the week- end I seem to be a bit brighter in myself ..I managed to get on my mobility scooter today and get fitted in with the Hairdressers near my house and get my hair done i only had a trim but it was a booster. I then popped in to the local Newsagents next door and got a few bits of shopping and when I got in I couldn't walk but felt I had achieved something .. I then rested all afternoon . We have to keep going don't we .. I'm staying on the 17.05 mg steroid all this week and see how I get on from there .I can already feel the weight going on but at least the Pred has got me out of bed . take care trish29
Hi trish29. I'm so glad you're feeling better in yourself and have managed to do a few things, especially to get your hair done. It's always nice to get pampered isn't it? Don't do too much though - look after yourself! As for me my pain has returned with a vengeance this evening. I'll see if the pain-free period lasts a bit longer tomorrow. If not I will just have to increase. I didn't want to as I look like the woman in the moon as it is...
Take care Badgergirl .. I know I have to take care ,this last few weeks have shown me that I have to go steady and I have gone up reluctantly on the steroids trying to cope with the pain myself but we can only take so much .. I know I will be tutted at for not being down lower on the pred but what are we supposed to do when these Flare- ups happen . They leave you exhausted . Everyone else is Buzzing Around you because it is Spring and so much needs doing , I used to be like that BUT I can't do it now. I hope you have a pain free night . Trish x
Hi Trish I am so sorry you are feeling awful I have just posted a question and now I feel dreadful because reading what you have I haven,t got anything to moan about at all. I did have a sinus virus,stomach infection etc which seems to have gone but I am still totally knackered best wishes Wendy
Thank you Kingharold11 for your Good Wishes and being just knackered is enough to put up with ..there are so many nice people on this Forum that take time to answer you .. take care. trish( Pat)
Here too you haven't a clue what you are on about. I really don't mind when people say "don't eat carbs..." - but when they dress it up in pseudo-science that they don't understand I do find it irritating.
Which confirms my suspicion you haven't a clue what you are talking about. I do - I've read the papers, I know what it is you are talking about. Please stop talking about half truths and confusing people.
I am so sorry to hear about so much pain and unhappiness. I feel for all of you who are suffering at the moment. I am gradually getting through this flare of mine, but it hasn't been half as bad as you are having. All human beings need to be seen and heard, and it sounds like your doctors etc. are not doing that and it makes the pain worse.
I may have said this before, but I am a counsellor and have not been able to see clients since July because of this awful condition, but I am hoping that when I am well enough I will be able to offer people in this physical and emotional pain something useful as a result of being in this situation myself. Do take care of your selves, be compassionate to yourselves, make yourself your own best friend- it 's all we can do in the face of this very confusing condition. X
Thank you suzy .. I know you have been through a bad time and I'm pleased you are feeling better .. I managed to get out this morning to a lovely Mother's Day Breakfast with my Eldest Son and Daughter- in - law and 2 of my Granddaughters .. My Partner and I were treated to a lovely Breakfast at a local Garden Centre. I struggled to go due to pain in the night but i like the family to see that i do make an effort. I am now back home and going to get a nice long rest as I'm exhausted . I am trying to be kind to myself but it doesn't always go down very well with other people in your lives as they try to stick to a routine.. Thank you for you support. Trish 29
I'm so glad you had a lovely time today Trish29! x
Thanks suzy1959. It will be fantastic to be able to draw from your own experiences to help others. As a complementary health practitioner I sat listening to my last client while I was in dreadful pain. I must have put out a very negative message with my contorted expression! I have now stopped seeing people for the foreseeable future so that's a financial struggle on top of everything else.
Hi Suzy1959, nice post. After reading many of the above posts, it seems that many are having the same problems we are having in the U.S. I haven't found anyone in NYC that has GCA. I am a paralegal, not currently working, except as a volunteer paralegal with a non-profit and some advocacy work, and news article writing.
I have to say that many doctors do not seem to be taking GCA and PMR, --- not only not seriously, but they often give the prednisone and expect to hear -- "no more" - about the illness or the very difficult, life altering effects of prednisone. I remember one rheumatologist I was seeing, I was having Cushingoid symptoms and told her of the tremendous fatigue and difficulties I was experiencing and she said -- "well that's what happens with prednisone", nothing more, and she seemed eager to get on to her next patient. I stopped seeing her. This is a very serious illness and I need someone to listen to me, give me information on dealing with the fatigue, etc. She was just "putting in time".
Both GCA and PMR can produce very painful and debilitating symptoms. Having a bottle of predisone near is not the only answer.
I really understand and sympathize with all of the above posting. It isn't good to be pushed out of a doctor's office with valid complaints about these serious life altering illnesses.
I am glad to hear that at some point, you will be offering counseling on living with these diseases. I think it is important and positive and I will participate.
I was pretty active before the GCA diagnosis, still am to some degree, but carefully. When I have to turn things down, due to GCA and prednisone symptoms, people are amazed and don't really understand it is because I am recovering from a flare and will have periods of fatigue. They don't understand, but this is what I am going through and I will do what is necessary for my body to survive this.
Nice to read your post and look forward to what you are trying to begin.
Wish you well and wish you health. all my best, Whittlesey U.S. NYC
No. You are upsetting other members and we'd be greatly relieved if you wouldn't post again.
Hi, no I'm not suffering, thank you.
As a matter of interest do you have PMR/GCA, or Chronic Kidney Disease. ?
Just wanted to say, --- "hang in there". Think we all feel that way at some time. I think Pats said it well, she said people will say, "but you look well" . And we may. But inside, we can barely walk and feel like -- possibly a little nap on the sidewalk would be good -- which we obviously can't do.
I have explained to some of my friends and co-workers that my arteries have inflammation and that can cause serious problems. Often they get very concerned -- . Some will call a few days after, and ask how I am -- and it sounds like they think I have cancer. I say, it can be dealt with, but it can be dangerous.
I have gotten better with the doctors and found some good ones, which is hard. The ones that do understand are ok to deal with.
During a hospital stay, when it was found that my arteries were dissecting, I was pretty upset and did not want to take a heart stress test, due to the possible harm to these arteries. They had the head of rheumatology come to see me. We spoke of many things including the effects of prednisone. He said if I was worried about facial swelling, he had a patient who looked almost like rhinoceros, from the swelling, but was actually fine. And he laughed. I did a little nod and half smile in return -- but I thought - "that poor man, the one with the exterior swelling -- that's not funny."
He told me in his opinion it was ok to do the test and they needed to see how my heart was doing. I agreed. I got very sick at the stress test, vomitting and they brought me back to my room.
But the patronizing, and we know best, "come on -- girl, just do what we say" does get a little much.
As a paralegal, we participate in the cases, work them to the best of our ability, and are respected for our work.
That pat on the back, "come on smile and troop on" is a little "old" and I, for one, don't appreciate it. I am capable of understanding what this is , how to deal with it, and smart enough to look for better ways of treatment, if they exist. It seems if we don't do it, who will ?
My sense of this.
I think we are all pretty brave, strong, and have endurance. and I think we are doing pretty well with dealing with these very serious, diseases and the effects of prednisone.
best, Whittlesey
The fatigue is one of the hardest parts of this I believe. I was getting periods of it, within about three weeks of high doses of prednisone and was saying "what's going on"? I believe it's one of the hardest parts of this (aside from eyesight loss, potential mortality, those things --).
And yes, having others, your partner, your professional friends, your friends, understand this, can be very difficult.
If I was having one of those periods of fatigue and was resting, I would get a call from someone in my non-profit -- "all right -- do this " on an aspect of what we are working on. "Well, I can't right now".
"Why not? "
I finally just started to say I was having "eye pain". It was something -- -- they could understand.
If I said "I am trying to deal with the fatigue from prednisone, so I can get over this" they would n't get it. Too many levels of disease, treatment, etc., to understand. Unless they had been through it themselves. Some of our members have had long course of prednisone or cortisone for different illnesses and they knew what I was saying. For the rest, I was having "eye pain". easier than a long conversation -- their frustration. and their insistence, adding to my fatigue.
The man I am dating, is surprised, amazed, fatigue would never have stopped me in the past. He is very supportive, really nice. I know he doesn't understand its source.
Cancer and recovery is more understandable than temporal arteritis affecting the arteries and the treatment can leave you "flat in bed" as you have said.
I wish you better times and that you feel better, Trish. I truly know of what you speak.
Pats, on this forum, has a very good answer on this. Would also recommend Dr. Christine Northrup, in the midwest, U.S. who in one of her books speaks of adrenal insufficiency. She attributes it to the stress women are now dealing with, but it is good for us, also, in how to deal with it, I believe. and that you are not alone. There is little written on GCA PMR in the states and how to deal with the effects of treatment. much more on cancer.
hope your days are better
all my best, Whittlesey
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