felt so tired

Felt so exhaustedly tired this morning I rang the rheumatology clinic at our local hospital, imagine my surprise when the rheum's secretary offered to put me through to a designated nurse at the rheumatology clinic. You can ring up and speak to her direct. trying to talk to the doctor is like trying to talk to god. She was very helpful and told me to double my present dose for 5 days and then drop back to my original dose. She then said if I don't feel any better then I will have to come in to the clinic which she can arrange. People complain about our hospital but they have always been unfailingly helpful to me including my 5 ambulance visits for collapses/unconcious episodes

16 Replies

  • I have said for ages we also need to be given a specialist NP as other rheumy patients are. Of course the primary problem then becomes that whilst they may be very good at RA - PMR/GCA remains a dark place for most of them because we have met that too! Access to occupational therapy and physiotherapy would also be wonderful. We can hope...

    Sorry you're feeling so down - do hope the quick fix is a quick fix.

    You haven't been overdoing it have you?

  • not till this morning got up thinking I,m going to do all those jobs I've not been able to do I did feel a lot better this morning but now I have to rest because i've been changing sheets and hoovering bedrooms etc. stupid me. The nurse seemed to know what she was talking about as does the rheumys secretary who I have always spoken to in the past not that she can diagnose anything but she always passes everything on faithfully to the doctor who then tells her what to say to me. What a rigmarole lets hope the specialist nurse will be some good.

  • Um - in my book changing sheets is one morning's work done! I can't hoover or my back goes straight into spasm so that's a good disincentive not to do it but combining two jobs is a no-no for me.

  • I'm only 67 I still think I can do what I did prior to PMR when I'm well I can but unfortunately PMR has other ideas. Still the increase in pred for a few days seems to have worked so far have to see what happens at the end of this week.

  • Hello kinkgharold .. We are the same age and going through the same problems .. I too couldn't understand why I can't get around to the everyday jobs and changing the King size bed could take me up to 3 days , the every day tasks just take longer than they used to ..Since being up and down on this PMR road again since February I have been very lucky to find a lady that does for me. I felt very inadequate to take on a cleaner but from the moment she arrived at my door she doesn't mind what she does and in 2 hours the house smells lovely and clean .. This is my extravagance and she knows that I do what I can on my good days ..I still deal with the washing but hanging it out is a problem and ironing is becoming a No No !! .My partner does what he can but because my condition has got worse it also puts pressure on him ..This last Flare /virus has given me Dental Problems and I had to have a tooth extraction today so that's knocked me for six again .. take care and go gently with the everyday jobs . trish29

  • Hi Trish I am so pigheaded that I still believe that I can do everything I have always done including going for long walks (can't do that at the moment) I am determined to beat PMR but things conspire against me. Water infections mostly that is what has caused my latest flair that and nitrofurantoin.This morning I feel not too bad but have just had a shower and guess what decided to take the shower curtain down to wash it because the last time I had my hair coloured it got all over it (black) I managed to get the curtain down with a lot of clinging to the bath and wobbling on a stool(too pigheaded to ask for help)anyway it is now in the washing machine. Look after yourself Wendy

  • Hi Wendy .. I know what you mean .. My being pigheaded has caused a lot of problems lately .. I seem to be getting one thing after the other since going down with the Original Flare/ virus in February ..Luckily I had a fairly good night last night after my tooth extraction .That all went well but still on Antibiotics which I don't think is mixing well with the Prednisolone .. My pain level on the base of spine is hell but I don't want to up the Pred more than 17.05mg at the moment .. I don't see my Rheumy for another month and he is gonna go mad as not down on the Pred and weight sky high and I can't walk at the moment . GPs cheesed off with me !! My Partner is frazzled with all my problems so i am too proud to ask him for more help .. I need shopping but I'm too tired to get on my mobility scooter to go and get it and because of my pain level .. So you see this PMR does take over but I think once my mouth infection settles down I will feel better ..PLEASE promise me that you won't go climbing getting curtains down etc .. Take it easy and nice to chat to you. trish29

  • OK won't do any more climbing my daughter is going to put the shower curtain back up when she comes on Friday. I daren't ask hubby Dave cos he has got a lot to do in the garden, Nite nite Trish

  • Nite Nite Wendy .. I hope you have had a better day .. My pain level never settled today and I'm very tearful but maybe thats through the tooth extraction yesterday .. I'm just soo tired .. It must get better soon? xx trish

  • Morning Trish how are you today? what is causing your back pain is it PMR or something else.Sorry you were feeling tearful last nite dentists are just one of my pet hates along with blood pressure machines.Wendy xxxx

  • Hello kingharald11 ..Hi again I am at the end of my tether today painwise as the lower back pain has shifted down a bit to the right buttock and has stopped me going out yet again .. I have had so much going on lately that its a job to know if its another flare due to all the Dental problems or the virus which ive had a good while but it can lastfor weeks/months according to my GP so that was exciting to know . It seems that there is no help at the moment , I took an extra 1 mg of Steroid today and I am just going for a rest to see if it will help the pain. Let's hope eh !! A lot of my problems are due to long term Prednisolone , but my body doesn't let me get down to where I would like to be .. I hope you are doing better today ,,I have a good Dentist and trust her . And I do use the B/Pressure machine at our surgery but my partner and I also have 1 of our own.. They both seem to be quite accurate .. Take care trish29x

  • Wendy

    You've been caught in the trap of feeling so much better that you've gone overboard with the bed changing and vacuuming all in one go, and all after just having increased your dose! That increase in dose has not 'cured' anything - it is just trying to damp down the inflammation that causes the symptoms again, and you need to help that process by taking things easy for a few days. Difficult I know, but necessary.

  • I also have access to an Helpline at our local hospital where I can speak to the Rheumatology Nurse Practitioner. She is a godsend and I have really valued the fact that I can speak to someone who understands. I cannot speak more highly of the care I have received from the NHS.

    Tomasina x

  • me too tomasina ive been well looked after by nhs,A consultant rheumatologist ,haematologist ,an Endocrine consultant ,and a specialist nurse in connective tissue disease and vasculitis.Always someone on the end of the phone when have needed help.Lastly but not leastly to my diabetic resource centre whom a visit 6mt periods.

  • Hello.

    Just a comment on the care side. I've been on pred since April last year. Started at 20mg. Cut gradually to 8. Then a flair up in December. At which point felt really ill. Back to 15mg, now reducing to 12mg. (on the slow reduction plan by PRMpro Vol). I can't fault the care I have from my GP

    from the outset .Following flair I've been to Rheumatologist, Neurologist, and Physio, together with regular phone consults. So. Thank goodness for Stour Surgery in Christchurch and my GPs. Dr Coupe and Dr Hoyle (who looks about 15)! There good one out there who listen to the person.

    I consider myself fortunate as I find my condition fairly manageable. A lot due to this site. And today - almost afraid to say - feeling good. And we can only cope one day at a time !!

    My best wishes to everyone. Especially if your feel despondent. Hang in there. Look after yourselves.

    Because we're worth it. Ann

  • At my first appointment with rheumatology I was given the helpline number have used i.t twice they are very helpful and Doctor from clinic has also phoned me. I consider I am lucky with the clinics I attend.The various side effects are awful . Hopefully they will all disappear one day. I live in hope Take Care

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