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PMR - newly diagnosed and struggling with my young family

Posted , 17 users are following.

Ally71
Ally71

Hi, i was diagnosed a few weeks ago and have been on 15 mg of pred for 21 days now. The pain was excrutiating and got better to begin with but I now have started getting worse pain gradually coming back. My joints are burning hot and im very sore. I have 3 kids, 3,9,11 that keep me very busy and to be honest I struggle to do the basics at times. Mornings are the hardest as Im in pain and have restricted movement but the meds seem to kick in after lunch but I am then struggling to stay awake, often laying on the floor snoozing while my toddler watches tv, before having to pickup the older kids from school and do the ferrying to the sport activities. Are there things I could be doing to help me get through the day a little easier. Im not sleeping well at all and rarely sleep longer then 2 hrs which doesnt help my mood. I dont want to be a grumpy mum but its tough and I dont want my family to suffer as well. I am considering cutting out sugar all together and maybe even trying the paleo diet, anything that may help get me through. Im a the waiting list to see a rhuemy but that will take a while. Any suggestions on issues such as managing sleep, pain and how to better function would be greatly appreciated. 

1 like, 52 replies

52 Replies

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  • Ally71
    Ally71

    Posted

    I was quite teary when i posted tonight but you know, forums do help, thankyou to everyone who so far has responded i do feel much better..... I look forward to learning more and maybe helping others feel better too. Better get some sleep before the kids get up...... Thankyou my day tomorrow just got easier😊
    • mary68968
      mary68968 Ally71

      Posted

      It's all a bit overwhelming at first, but evens out after awhile.
  • judytal
    judytal Ally71

    Posted

    Ally, i can't imagine how you can take care of 3 children and be dealing with PMR.  As others have suggested you probably need a highter dose of Pred.  I am taking 4mg twice a day .... the pain is gone but the fatigue is the worse.  I'm trying to manage on the 4mg.  I have no children and live by myself so I can crash when ever I need to. 

      Hope your MD realizes that you need higher dose at least for awhile.

    all the best 

  • EileenH
    EileenH Ally71

    Posted

    IF what you have really is PMR than I'm afraid what you need more than anything is REST! I do realise that's probably not an option! However - what had probably happened is you are doing more because you felt better and that just doesn't work. Your muscles are intolerant of acute exercise and don't tell you when you have done too much, they don't recover as quickly either, everything is like comparing a gentle stroll with climbing a mountain!

    I have to say though that your description of burning joints doesn't fit the usual main complaint with PMR - it sounds more like a real genuine inflammatory arthritis and the onset can be similar.

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

    This link takes you to links that will give you loads of info - read if you have the time and energy.

    Several of us have found cutting carbs drastically helps with weight gain on pred - I eat an almost paleo diet I suppose but not as restrictive - not giving up wine for anyone! It may be - particularly since you obviously can't help management with pred that you need a higher starting dose - 15mg is the usual, but up to 20mg is also fairly usual.

    The links I have given you include a couple of papers from doctors, one by Quick and Kirwan and one by Mackie and Mallen - aimed at GPs to help them manage patients with PMR alone without frequent recourse to a specialist and I'm sure your GP would welcome having them since you are in the sticks in Oz if I remember rightly - where are you?

    The link I gave you has various info about reducing - yes, over time, but not until you are comfortable and you are looking at years, not weeks or months. They keep telling us that it takes 2 years - that applies to about a quarter. About a half are looking at up to about 5 years. This is a chronic illness - and the slow reduction described in the replies bit of that link have proven useful for a lot of people.

    Keep asking - someone will keep answering.

  • Dinah54
    Dinah54 Ally71

    Posted

    You do seem very young to have PMR - I'm guessing in your early forties? Did your GP rule out other possibilities such as rheumatoid arthritis before trying you on a trial 5 day dose of steroids?

    And while it's fine for those who have been in the drug for a while to control the dose to avoid flare ups I don't think it would be wise in your case before you have seen a rheumy. Because steroids will mask your symptoms and prevent a possible alternative diagnosis.

    As for the tiredness I'm afraid that goes with the territory - it happens with any autoimmune disease. You need to be able to rest in the day and get a good night's sleep. Is there anyone who can help you with your children?

  • helenemiles
    helenemiles Ally71

    Posted

    Hello Alli 

    Click here to view image

    I too am a newbey and am a full time single working mum . I have had a tough 2 weeks and so feel for you . Trying to be a mum , when you are in so much pain is tough .

    I started on 20 mgs and was instructed to reduce after 5 days ... I experienced a huge improvement in my symptoms within 48 hours . When I reduced to 15 my pain came back with !!!!!! 2 forward 6 back . I share your frustrations ..... My son is 12 and has had the worst Easter ever . I feel such an inadequate mum right now but keep telling myself that this can't be permanent and things will get better .

    as a result of my increased symptoms I have gone back up to 20 mgs as from yesterday .... Fingers crossed 

    I am quite into mindfulness meditation which does help with , the pain , and sleep .

    I have an appointment on Monday so am hoping for a more detailed plan forward .

    hang in there 

    Helene 

    • EileenH
      EileenH helenemiles

      Posted

      NO! PMR os NOT the same as other illnesses where pred is used - you need that 20mg for a few weeks until all the existing inflammation is out of the way. But the inflammation returns every morning so then you need to reduce in small steps - you are probably doing far more than most of us so may need a bit higher dose for a while to cope but you should still be able to reduce well from 20mg. No reduction should be more than 10% of the current dose - so not more than 2mg for you at present, at 15mg it is less so 1mg drops are better. There are two reasons for this, it is less of a shock to the body and you are less likely to miss the end point which is the lowest dose that manages the symptoms.

      If your GP argues, google the paper "Our approach to the diagnosis and management of polymyalgia rheumatica and giant cell arteritis" by Quick and Kirwan and give them a copy (it was amongst the links I gave you to start with too). Kirwan and co have written this paper for GPs to help them do this better so the GP shouldn't get antsy about it. They start at 15mg for 6 weeks, 12.5mg for 6 weeks then 10mg for a year and found it reduces the rates of flares from the 3 in 5 found with convenetional reductions to 1 in 5 - almost all flares are caused by reducing too fast or too far, that has been in the medical literature for years.

      You need that 20mg for at least a month before even thinking of reducing - and then really not by 5mg at a time.

    • helenemiles
      helenemiles EileenH

      Posted

      Thanks Eileen 

      your support and advice is really helpful . The change was so dramatic I can't describe !!! The GP has been in limbo really as has been waiting for the report from the hospital last week !!! Which guess what ..... Lost so where in cyber space .

      I found that with the reduction the severity of the pain in my shoulders back and neck was extreme .... 

      Mindfulness doesnot ease the pain but helps me manage it lol 

      Click here to view image

      I have an emergency appointment with the rheumatologist on Monday , so I'm hoping for more detailed discussions and a plan for treatment .

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      Even some rheumies will try to get you to reduce too fast - just bear that in mind.

      Ah yes - the cyberspace excuse. They mean they forgot... (I worked in the NHS, so did my husband)

      And no - although Switzerland is nice for holiday (too darn expensive now) you don't need Dignitas yet!

    • helenemiles
      helenemiles EileenH

      Posted

      I too work for the NHS !!!! 

      Have just received my +30 years service award .......

      Click here to view image

      All I can do at the moment is take little steps and take each day as it comes . 

      Im hoping that in a few weeks I will be reporting more positive entries as I wonder if I am coming across as moaning !! 

      Helene 

    • EileenH
      EileenH helenemiles

      Posted

      Six years or so ago OH was doing sums every month almost to see if we could survive on a reduced pension (for jumping ship 3 years early) until I got my state pension. Eventually he decided the time had come - the NHS pensions lot then took over 6 months to sort out what he had found online in a single visit - whether he'd worked long enough to get enough of some pension entitlement or other. Then we ran. The gubmint then changed the rules so we still have no idea at all what he will get at 65 - but we have had a wonderful 5 years so far! We have a bit less money than others in the family but the QOL is fantastic here half way up a mountain in northern Italy...
  • christine_fay
    christine_fay Ally71

    Posted

    Yes cut out sugar and white bread... and any alcohol. Try using those blocks that you put in picnic bags that you freeze in the fridge. I find that one of these wrapped in a cloth and placed on the painful area , especially on the spine, mkes me feel great and pain free for a few hours. Quicker, safer and more effective than any drugs... sometimes I have five or six strapped to me with velcro belts ! I dont envy you with kids to look after... I find vacuuming one room has me flat out sweating and unable to move for hours.
  • FlipDover_Aust
    FlipDover_Aust Ally71

    Posted

    ...and watch out for the hidden sugars in processed food!! the amounts will shock you! Lots of literature out there about the link between sugar and inflammation (and the nasty Omega 6 fats).

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