Up and down like a yo-yo

Polymyalgia_largeWell it has been 6 weeks since I started the steroid treatment for Polymyalgia Rheumatica… commonly known as PMR.  After the first week I started to see  a slight improvement in myself.. I was less stiff in the mornings.  In fact it was quite nice to wake up one morning and not hobble around like a 90-year-old geriatric.

I thought I was getting there, yes there had been a couple of side effects from the steroids but nothing to warrant me to stop taking them; and then wham… flu… hubby came home with a sniffle and that was it.  I don’t catch colds normally, if I do start to have the onset of a cold, it normally goes without developing into a full-blown head-cold.

vicksNever before have I known a cold to knock me back so much… cough, sneeze, splutter and nothing I took or did shook the bloody thing.  Paracetamol, flu remedies even Vicks rub (which I hate) wasn’t having an effect on this cold.. to be honest I felt like I going through the wars.

Honestly, it must have been desperate for me to use Vicks.  I can’t abide the smell of the stuff, but him indoors swears by it.. as soon as he starts sniffing that it is it.. a layer of Vicks is applied to the chest and it is like sleeping with a bloody oil slick.  You roll over in the night and then gag because the stench of Vicks has just uninvitedly entered your nostrils.

Seriously though what is it about this man-flu.. not being funny but I am sure the world would come to an end, if men had to endure childbirth  lose all their dignity having cervical smears and the dreaded cramps every 28 days.   They get a cold and immediately think they have bird-flu and wrap themselves in cotton-wool.  Us women, endure a day or two of stomach ache and cramps, once a month, whilst feeling like a hung-out dish-rag that has a permanent snarl on our faces and they tell us having a cold is the worst thing they have had to endure.. get real men.. us woman just get on with it.. It is a case we have to…  Kids don’t feed themselves, houses don’t do their own housework and you men want feeding.

Mind you I mustn’t grumble really because my hubby is good and does take his turn in cooking and will help about the house.

blood-pressureEventually after about 10 days of having this cold, things started to improve, anyway after 4 weeks, of taking the steroid tablets, I had to go back to the Doctors as my dosage was due to decrease by 2.5mg and I needed a prescription for 2.5 mg Prednisolone.  I decided that I would speak to him about the chesty cough and cold.. well what I shock I had.. during the MOT I was informed that my blood pressure was now sky-high again and I needed to increase the blood pressure medication.

Oh here we go again, get one thing sorted and then something else starts.  Anyway I was given the 2.5mg of Prednisolone and the blood pressure tablet was increased.. and told to return in a months time for another check up.  As for the cough and cold – well apparently when you are on steroids your immune system breaks down and that is why I caught such a shocker.

I was given the usual instructions, if I come into contact with anyone who has chickenpox or shingles, I have to inform the Doctor immediately..

Well that was on the Wednesday, the very next day (April 11th) was the start of the reduction in tablets.  Even though the aches and pains were a lot less in my back, shoulders and neck… my hands were not improving.  I was still cack-handed and dropping everything.  There is no strength in my wrists and my thumbs and fingers ache.. lifting pots and pans are becoming nigh on impossible and as for chopping vegetables.. that is a no-no.  Thank god for Asda and Tescos for their pre-chopped fresh vegetables.

Gradually the cough subsided and the cold vanished but the aches and pains had started to return.. it was after about 3 days of taking the lower dosage that I noticed that my back, arms and legs were aching all over again.   Going up the stairs was once again becoming a struggle.  Anyway the new dosage had to be lowered again in two weeks time by another 2.5 mg, that what the trouble, I didn’t know if it was the lowering of the steroids or the results of possibly having the flu that was making me ache more.  But if I was starting to ache again by lowering the dosage by just 2.5 mg from the original daily 20mg by the time I had lowered it in total by 5 mg I would be back where I started.

One thing I do love about our Doctors, and that is you can book a telephone consultation.  The doctor will ring you after surgery and you can speak to them and get advice.  This is such a good idea, it saves Doctors having to allocate appointments for just a couple of questions.  And it stops you having to sit in waiting rooms, knowing that you are going to be in and out of the doctor’s room in a couple of minutes.

Well I rang my surgery, explained the situation and that evening my GP rang me.. he told me not to lower the dosage but to go back to the original dosage of 20mg and see if my symptoms improve.  So that is what I did.  I increased the dosage and have continued to take that dosage since.  Gradually over the last couple of days, the symptoms have resided and the pains are subsiding and I am getting my energy levels back slowly and surely.  Yes I still get cream-crackered easily.

One thing this PMR does to you, is make you very fatigued, feel like shite and has a great impact on your day-to-day quality of life… honestly if the Olympics decide to have a sleeping event.. let me know.  I will get Gold Medal for it.

My wrists and hands are no better.. still as weak as can be.. but I will keep using my fingers and move them.. The last thing I want is my hands to seize… I know I can’t lift things properly, and I have a good habit of dropping everything now but I don’t want to lose the use of my hands totally.  Even if it hurts to type at times… it is better to keep my fingers moving than let them deteriorate.

That is the thing with this illness, you know exactly what you can do and what you can’t. And if you do too much, you know the next day you are going to suffer.  You have your good days and your bad days and you have the flare-ups.

In just over another weeks time I am due back at the Doctors for another blood pressure check and a review of the steroid dosage.  I am just getting back to feeling that I can move without too much agony.. I really hope they don’t decrease the dosage again.. I don’t think I could go through all those aches and pains again.

Believe me, if you speak to any person who suffers from PMR, they will tell you.. the illness makes you feel like shite at times, well most of the time actually, and so does the cure… (steroids).  I wouldn’t wish this on my worst enemy but I am not going to let it beat me… yes depression does set in at times.. because there is nothing worse than walking around aching and in pain… but how I look on things.. there are others who are in a worse state than me.. and they still carry on.

Yes the hospital and my GP has told me it is a long haul and it could take a good couple of years of steroid treatment before I am over PMR… and there is no point in my eyes, feeling down about it.. I have it.. so learn to live and deal with it.  And it is surprising to find out exactly how many people who are in their 50’s and some are even younger that have this illness.


10 Comments Add yours

  1. carla says:

    Hope your treatments starts to make you feel a bit better sooner x


    1. Bren says:

      Thank you, I am sure it just a matter of time. I had never heard of this illness before.. and the thing is they don’t know exactly what causes it.


      1. carla says:

        I’ve heard of it, but I think it’s one of those illness’s that isn’t publicly talked about so know one really knows what it is and because it’s not common there isn’t enough money for research etc People don’t tend to talk about illness’s or diseases you can’t see!


        1. Bren says:

          From what I have read up about it, it normally affects the 70+ year olds.. but as you say there isn’t enough money for research… and I suppose with cutbacks it is the likes of these illnesses that have their research put on hold indefinitely.


  2. tamara says:

    Wish you all the best


  3. Good luck to you. I’m going through this disease for the second time and it’s a worse ride than the first time. Yahoo has groups for support. You might find lots of support on this site: PMR_chit_Chat@yahoogroups.com


    1. Bren says:

      Thank you, I will take a look at that link… It is so debilitating, and saps your energy levels down to zero. There is a group on Facebook that offers support… The bit I hate is the jelly-legs.. it is OK when you are out and you have your partner to hang onto but it is quite unnerving when you are on your own.. I hope you get some relief from it soon.


  4. Marcy says:

    I was diagnosed with this illness today after one neck and one shoulder surgery that were not helpful to my pain. My mother suffered from this illness and I am mortified to have received this news. Help!!


    1. Bren says:

      Hi Marcy, it really knocks you back.. when you are first diagnosed and they tell you that a course of steroids is the only way forward..

      I don’t know if you are on Facebook at all, but there is a support group, where people help each other and discuss this illness..

      I have learnt that you have to pace yourself.. if you don’t do enough exercise that doesn’t help, but if you do too much that makes the symptoms worse.

      It is rather debilitating at times, especially when the steroids kick in and you suffer some of the side effects of them… At the top of this blog there is link for information about PMR, which you may find helpful.

      Take care


  5. Marcy says:

    Thank you Bren, Yes I am on facebook and will investigate the support I can find there (Marcy Gregory, Washington State, USA). I am torn between being relieved that the pain and sleeplessness, fatigue and feeling of being “sick”, could be associated with just one illness and the fear of the steroids being the only cure and remembering the horrible side affects my mom experienced. Basically feeling scared and confused…and in pain.


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