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Help. I feel so rough...

Posted , 10 users are following.

Charlieschoc
Charlieschoc

Hi all. I have been given steroids as a trial. 10mg for 2 weeks. (alrhough I upped it to 15 myself after 2 days) I responded quite well with the fatigue gone and pain reduced after 2 days. But pain still about 60% so upped it to 15mg.

Pain improved over the next few days down to around 30% started sleeping much better. Not in pain all through the night.

Then I started to become more active. I tried to return to work. I worked 4 hours non stop on my feet. I started to feel really ill. Light headed and my leg muscles felt like jelly. I had a sleep and when I got back up and tried the stairs to go down, the backs of my legs felt like they were trembling

Now 2 days on if I try to stand for more than 30 mins I feel really rough. Today I had to finish an order and I tried to push myself a little futher than I should. Again I felt positively ill. I had pain in my thighs like they were on fire. I got clammy. Hot sweats. Severe headache and pain across my face (cheek bones).

I know I should be resting and not working but I fear I will lose my bussiness.

I was wondering if anyone else has had this?

I am starting to think maybe its not PMR?

Advise please.

Now I have had a sleep the ill part has passed just got muscle soreness now xx

1 like, 30 replies

30 Replies

  • ptolemy
    ptolemy Charlieschoc

    Posted

    The fact that the pain reduced with a relatively low dosage indicates it may be PMR. Do you know what your ESR and CRP blood test results were? The trouble is PMR is very unforgiving and if you overdo things it bites back. Pushing yourself is not a good idea sadly. 
    • Charlieschoc
      Charlieschoc ptolemy

      Posted

      My esr was34 crp 21 so not really that high. I am 44. Female. And rhummy said it couldn't be pmr as i was too young. My mother has PMR so I have seen her go through it but she says herself she thinks she got off lightly after reading other peoples experiences.

      She wants me to go to A&E but they will just laugh at me. If a top dog has said no they wont listen.

      My gp gave me another trial of steroids to shut me up lol x

      I will make an appointment 1st thing tomorrow for GP.

      Wish me luck x

    • ptolemy
      ptolemy Charlieschoc

      Posted

      Hope things go well with your GP. Your mother can probably give you advice over PMR as well. Most of us had never heard of it until we got it!! They do say that it is twenty five per cent genetic and auto immune diseases can run in families. I am not sure how correct this is, but it does seem to be a possibility based on friends of mine. My mother had ME. Another auto immune disease.

      I think I would stick on 15mg of steroids if that works OK. That is the normal starting dose, 20mg is sometimes needed. Your CRP was quite high, it should be around 0-5. It would be interesting to see what it is now after taking the steroids and see if it has reduced at all. 

  • Anhaga
    Anhaga Charlieschoc

    Posted

    I'm not an expert - new here myself -but the fact that you have pain in your head makes me think you should see your doctor as soon as you possibly can.  As you were started on such a low initial dose it seems that there was no danger you have GCA, but it is certainly worth checking if only to put your mind at ease.  Hopefully it was just your overdoing it your first day back at work. I've learned the hard way to be kind to myself.  We aren't well, and we do have to be careful.  Hope you feel better soon.
  • EileenH
    EileenH Charlieschoc

    Posted

    The response you had to the moderate dose of pred really does suggest that you have PMR - nothing else responds so dramatically to this sort of dose. Your response of 60% improvement with 10mg after a couple of days was good and had you waited a few days would probably have improved. The 70% improvement with 15mg is absolutely typical. 

    But part of the management is up to you - you MUST rest and pace yourself. You have maybe caused the "relapse" by abusing the relief that pred gave you. 

    The symptoms you describe with severe headache, feeling ill, thigh pain which sounds like claudication and sweats makes me think you maybe don't have PMR - but that isn't good news, it is because it suggests you may have GCA, PMR's big sister. If any of these symptoms get any worse or if you develop ANY visual symptoms at all of any sort - please go straight to A&E. GCA is a medical emergency and requires immediate treatment to avoid loss of vision. You must tell them the entire symptoms and the result you had with first the 10mg and then the 15mg pred. PMR can be one of the symptoms of GCA.

    Take your mother with you - she sounds an eminently sensible lady! 

    While I don't want to scare you I am going to give you a link to a story from 2 years ago for you to take with you to the doctor, whether it is the GP or to A&E so they know that 44 is not "too young" - I will tell you the story here and then try to find the link and send you a private message with it.

    About 2 years ago an 37 year old man in South Wales was taken to hospital and died of a stroke. When they did a post mortem the pathologist said he had died of a stroke probably due to undiagnosed and untreated GCA. A rheumatologist may have his beliefs - but he cannot see through skin and artery walls. The pathologist sees it all. If a 37 year old man can have GCA - you can have PMR and even GCA,

    Please do go to hospital if you feel worse. Call an ambulance if necessary. In Yorkshire the paramedics are told to watch out for GA as a medical emergency. It is the same as a stroke or a heart attack - except it affects the optic nerve.

  • lodgerUK_NE
    lodgerUK_NE Charlieschoc

    Posted

    Charlieschoc

    I know Eileen said she would forgive you for cleaning the kitchen on the promise of some Chocolates, but Charlie what on earth where you thinking of doing all that work. 

    Do as Eileen has said and please try and get your head around this, neither PMR and/or GCA are to be messed around with - you cannot 'beat' them, you can try and they will come back at you big time, which I think you have found it for yourself.

  • FlipDover_Aust
    FlipDover_Aust Charlieschoc

    Posted

    Whatever it is (and it sounds like PMR and a reaction to Mr Pred) you must remember YOU ARE SICK!! This isn't a cold, it's not something you will get over in five days with some over the counter medication.
  • Charlieschoc
    Charlieschoc

    Posted

    Thank you all for your words of wisdom. I have always been so active. My working days around Christmas and Easter were a good 12 to 16 hours. I feel so bl**dy useless.

    I need a good slap lol. Handcuffs may help....

    I am ringing docs at 8am hopefully to get an appointment.

    I know I can't go on like this xx

    • EileenH
      EileenH Charlieschoc

      Posted

      Almost all of us on the forums were active before PMR came on the seem. Typically the "go to" person for the entire family, working or volunteering in active fields. We DO appreciate how hard it is for you - and we know it is something you have to find out for yourself but we always hope to save someone a lot of struggles!

      It DOES get better - but it may be a while.

  • Anniecurd
    Anniecurd Charlieschoc

    Posted

    My dr also started me on 10mg of pred. I felt pretty good the first day, but that night the pain was as bad as it's ever been. Is that normal? He wants me to continue for another 4 days to see if it gets better.
    • ptolemy
      ptolemy Anniecurd

      Posted

      Annie, 10mg may be too low a dose, normally people start on 15mg and some even on 20mg. 10mg may not be enough to get the inflammation under control properly if it is PMR.
    • EileenH
      EileenH Anniecurd

      Posted

      The standard starting dose is 15mg - and some people need 20mg to start with. The 10mg almost certainly isn't enough to clear out all the inflammation that has mounted up. It may get better after the 4 days and maybe that will be enough to convince him to continue with it. 

      Maybe he'll be prepared to read this paper:

      Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell arteritis by Quick and Kirwan

      There is a link to it in this post:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      under the heading "Bristol paper"

  • Charlieschoc
    Charlieschoc

    Posted

    I got to speak with a GP today (face to face doesn't seem to happen at my surgery anymore)

    She said she had no idea what was wrong with me. But she wants me off the steroids to see what happens next. I got upset and told her that no one seemed to understand just how ill i felt.

    She went very quiet but then said I will reduce the steroids to 5mg a day for 7 days so that you don't just stop abruptly.

    I told her I didn't agree with the rhummy and she said yes i know its in your notes!

    I then bravely asked if I could have a second opinion. She said yes. She has agreed to refer me to the professor at the QE in Birmingham which I was advised to ask for on this forum.

    I have no idea what will come next. Fingers crossed.

    Maybe this is all just a bad dream and I will wake up soon xxx

    • lodgerUK_NE
      lodgerUK_NE Charlieschoc

      Posted

      Good for you Charlie - you are now taking control - you only have one life - it is not a rehearsal, so do not be put off.

      What dose of pred are you on now?

      Down to 5mg, what is the percentage drop?

      Answer asap please.

       

    • Charlieschoc
      Charlieschoc lodgerUK_NE

      Posted

      I was put on 10mg but i borrowed some off my mom as I felt so awful and have been taking 15 mg. X
    • Anhaga
      Anhaga Charlieschoc

      Posted

      My understaning is that if the pred does not work (and I mean really significantly so it feels like a miracle cure) within two or three days then the diagnosis of PMR is almost certainly wrong and further investigation needed.  Don't know if that low dose of 10 mg you were started on would mess that up.  I hope you can see that specialist really soon, if not should you go to an emergency department?
    • ptolemy
      ptolemy Charlieschoc

      Posted

      One test for PMR is to have a steroid sandwich test, one week on vit C, one week on 15mg of steroids and then one week on vitamin C. Patients are asked to document how they feel each day. If the steroids have a significant effect within a couple of days or so, a diagnosis of PMR can be considered. If you only take the steroids for a week you should be able to stop without needing to taper. 
    • EileenH
      EileenH Anhaga

      Posted

      That is PMR - if what Charlie has is GCA (which is what we are concerned about because of the symptoms being worse and the headache) then 10mg wouldn't do much as the dose needed is more like 40 or even 60mg. She had a good response to 15mg - fairly convincing of PMR.
    • ptolemy
      ptolemy Charlieschoc

      Posted

      Charlieschoc how are you currently feeling on 15mg? Are you much better or have you still got the same symptoms? 
    • Charlieschoc
      Charlieschoc ptolemy

      Posted

      Before any steroids a week or so ago i was feeling awful lots of pain and so so tired. Having to take at least 1 maybe 2 naps a day.

      After 2 days on 10mg pred I felt 60% better but had a pressing bussiness order to fulfil so I upped the pred to 15mg in the hope I would feel even better.

      After 2 days at 15mg I felt brilliant. So set about my work. Standing for 4 hrs making chocolate. I felt exhausted after and very weak.

      The day after the pain in my legs was unbearable and the day after that even worse.

      I have spent today in bed resting and I do feel better. Less pain all round.

      I think the response to pred was incredible and gave me false hope. I very much started to run before I could walk...

      Not sure if being at pred 15mg for 3 days would have seen me with this response if it were PMR?

      My headache is much better only coming every now and again. Face pain has stopped.

      I just don't know what to think.

      My body reacted badly to something?

      Whether it was PMR the steroids. Over work I just have no idea. xx

    • ptolemy
      ptolemy Charlieschoc

      Posted

      The fact that at 15mg everything improved so much does seem to point to PMR. Hopefully you do not have GCA too. If you have bad headaches or face, jaw or head pains you should seek medical advice immediately. From what you say your work is highly likely to exacerbate the PMR. I have found PMR controls you rather than the other way round and you have to listen to it. You have an illness and you cannot carry on as if nothing has happened. The steroids reduce the pain but that is all, you will still have PMR and symptoms such as tiredness. Try and have as much rest as possible, PMR is life changing and you will need to adjust to it. Pamper yourself! 
    • lodgerUK_NE
      lodgerUK_NE Charlieschoc

      Posted

      Charlie

      Yes, Charlie, the 15mg of pred for 3 days could have made you feel brilliant and may just have held.  People with PMR are normally started on 15mg to 20mg - so it would make you feel better.

      The face pain and headache are more worrying, the 15mg may just be holding GCA at bay - a sudden drop to 5mg is just not on until GCA has been discounted or confirmed and if confirmed a higher dose will be necessary.

      You need to stick at 15mg and go back to your GP.

      You need an urgent referral to the Professors's team at QE Birmingham.  A telephone call direct from GP to Prof would help.

      If necessary is it possible you could see if the Professor does private work and then pay for an initial appointment?

      If  the headache persists, albeit intermittently,  or any blurring of vision, however slight, or if your jaw aches with eating and the pain in you face, you go to the A&E at the QE Birmingham and ask to see the A&E Consultant and tell him exactly what has been happening to you.

      If we are wrong - then whatever is happening to you will be sorted out at A&E. You have nothing to lose on this one, but everything to gain including a diagnosis and the correct treatment. 

      Eileen post told you about the 37 year old man in Cardiff, it made headlines  and as she quoted " The pathologist sees it all. If a 37 year old man can have GCA - you can have PMR and even GCA",

      It is Friday tomorrow, don't wait till next week.

       

    • Charlieschoc
      Charlieschoc ptolemy

      Posted

      Thank you. I feel very tearful today. Its like I have taken a massive backwards step. From what I am learning off you lovely people on the forum its all down to me.

      So my fault.

      I am finding the whole slowing down business very tough. Especailly still having the twins to care for. (they are 10)

      Although I have to say Faith my daughter has been brilliant making drinks n snacks for us all.

      Charlie my lad is very laid back he probably hasn't even noticed I have been ill. Lol xx

    • lodgerUK_NE
      lodgerUK_NE Charlieschoc

      Posted

      Not your fault Charlie, you have not been given the correct treatment or diagnosis yet. 

      If you want to blame anyone, blame medics who think because you are young you cannot have PMR and/or GCA.

      Medics work on statistics, and has been explained to me, look at them like a Bell curve, so the one's at the top are the biggest cluster, but on both curved sides there are people who do not confirm to the norm and are on a sliding scale to the bottom of the curve on both sides.

      I am part of that awkward brigade and as the two Consultants I am seeing at present for gall stone and the Consultant Anaethetist has said, 'I am a medics nightmare incarnate' - I replied I knew that, now can you help?   They are.

    • Charlieschoc
      Charlieschoc lodgerUK_NE

      Posted

      Well I guess there is no point being awkward unless we show it!!!

      I had my gall badder removed 2 yrs ago. I hope you soon find releif. Gall bladder pain is really nasty.

      PS. Charlie's choc is named after my son.

      My name is Jenny lol.

      But I quite like being called Charlie too hehe xx

    • Anhaga
      Anhaga Charlieschoc

      Posted

      Here, have a virtual hug.  confused  I "fell in love" with the doctor who diagnosed me after months of seeing another who just prescribed painkillers. 
    • lodgerUK_NE
      lodgerUK_NE Charlieschoc

      Posted

      I am named after a much loved cat who died when she was 17.  That was nearly 20 years ago rolleyes
    • ptolemy
      ptolemy Charlieschoc

      Posted

      I think it is a shock to most of us when diagnosed with PMR. You are not stepping backwards you are just in a learning curve for the future living with PMR. You will find lots of ways of improving things you would never have thought of as you go along which will make life easier again. I suppose it is like anything new, you slowly get used to it and adapt. 
    • EileenH
      EileenH Charlieschoc

      Posted

      Just because you feel so much better with 15mg pred it doesn't mean that you are cured. The pred just manages the inflammation and stops the resulting pain. Your muscles remain intolerant of acute exercise though - so you have to learn to adapt how you live and avoid the things that make it hurt. It is amazing what things you learn are NOT that important and how you can do things differently. 

      Little things like keeping a basket at the top/bottom of the stairs and collecting things until it is worth one journey upstairs rather than half a dozen mount up and save your poor muscles a lot of effort. And I'm sure the 10-year-olds are capable of helping with that. Be clear with them, tell them you are poorly and need some help. They are never to young to learn.

      You haven't taken a backward step - you have taken one large learning one.

      But one thing I disagree with lodger on - not an urgent appointment but an EMERGENCY one. Urgent still means weeks. Emergency means NOW.

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      Thanks EIleen, I dithered about urgent or emergency as there was a change some time ago and I just could not remember which one.

      I never mind you disagreeing with me - it all helps. smile

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