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having a rough time

Posted , 6 users are following.

dee2418
dee2418

Hi All,

I don't post much but I read a lot and I have to say it does help that others know what we're going through.

After being wrongly diagnosed for 2 years I saw a rheumatologist last year and was first diagnosed with polymyalgia rheumatica and put on prednisolone then when I saw him 3 months later he said I also have fibromyalgia.

I work full time, office based, and this week my pain has been shocking. I hurt so much but worst in my hips so I have no idea if it's the PMR or the fibro causing the pain. I'm on reduction (every 4 weeks) of prednisolone and am now on 9mg, my GP arranges blood tests every month and I'm due to go next Tuesday so won't find out anything till then.

The rheumy arranged for me to see an occuaptional therapist and that appointment is in 2 weeks so hopefully that will help me to better manage this nasty nasty illness.

I've read on here about self help with vitamins and minerals etc but I take so many tablets right now I feel scared to take anything else.

The Occy health in work told me to get up from my desk and take a walk every 40 minutes to self help but I have to admit to failing on that one every day.......40 minutes seems like 5 when you're busy!!

Sorry if I seem to be moaning but if anyone can give me advice on what to do then please do..........even if it's just a kick up the bumsmile

 

1 like, 14 replies

14 Replies

  • lorraine230311
    lorraine230311 dee2418

    Posted

    Hi Dee, sorry to hear of your problems, you're having a rough time too by the sounds of it. You sound so like me, mine is all in the hip/lower back/pelvis area. I have Symphysis Pubis Dysfunction too which never left after the birth of my daughter. This seems to be where it all began! I am office based as well and I hear what you are saying about the time thing but I have to just stop myself working and walk about - if I don't I am crippled! I also have a bean bag which heats in the microwave and I have that most of the day.

    You are not moaning! It's great to hear I'm not alone. I too am looking for advice had this for 4 years and only diagnosed this week... xx

    • dee2418
      dee2418 lorraine230311

      Posted

      Many thanks for taking the time to reply Lorraine. My daughter gave me a lecture about sitting in my chair for too long so I had to take that one on the chin smile

      Work have been brilliant and if I'm on a really bad day I just book it as working from home.

      I work in an office that has all different shift start times so when I go home someone is waiting to jump in my chair and I guess that's where a lot of my problems come from.............the chair settings which have been done by occy health are obviously only suited to me and whoever sits at my desk adjusts it. I come in next day and often don't realise until I'm in agony and by then it's too late. Despite me putting signs all over my chair they chose to ignore them so I've now had to ask security to lock my chair away.

      I've got one of those microwavalble bean bags so guess what's going in my bag ready for Monday morning smile

      Oh and I actually managed to achieve my 40 minute stroll and though still sore I do feel better for it x

    • lorraine230311
      lorraine230311 dee2418

      Posted

      Well done you with the 40 min stroll thing! I am looking at other jobs as I do 39 hours sitting at a desk and it's maybe not the best thing. I remember talking to my friend who has rheumatoid arthritis and she says that if you sit about then that's all you're ever going to be able to do so I've been pushing myself big time! Hope the bean bag helps, keep us posted xxx
    • christine26761
      christine26761 lorraine230311

      Posted

      And well done you too Lorraine, if you do the same thing all the time and expect different results...who are we fooling...excersing is just soo hart for us yet sooo vital,  but there's always something we can do..I do hydro therapy, can't walk much, but boy can I in a heated pool...:-) xx be blessed..xxx Aus
  • christine26761
    christine26761 dee2418

    Posted

    Poor you precious, sounds horrid at the moment..most of us gave Fibro plus other issues, seem to go with the territory..getting up every 40 mins or so is really really important even if your work has to suffer a bit..at kea set you won't suffer sooo much..ot eater bit tis and bean bags in the microwave-heated are wonderful..your nit moaning, we all help each other on here..even I we can't help practically we can help emphatically, we do know this rotten pain gets us down at time...chin up...half full glass and all. Stay strong..it's hard I know ..feeling for you:-) xxxxx
    • christine26761
      christine26761

      Posted

      Soooo sorry Dee. some of these words looks horrid..I meant    

      'at least you won't suffer'. 

      Hot water bottles and little seed/bean bags heated in the microwave are great ...:-) Australia

    • dee2418
      dee2418 christine26761

      Posted

      Thank you for taking time to reply Christine, the support on here is amazing.

      I'm very good at translating the old typos and that's probably because I do enough of them myself, especially if I'm trying to use my phone to write........my fingers just don't seem to do what I want them to sometimes so add that to predictive text and I'm totally a losersmile

      I just replied to Lorraine and my microwavable bean bag is in my work bag already, can't believe I didn't think to use it before x

       

    • christine26761
      christine26761 dee2418

      Posted

      Great, heat is awesome for our pain,  I know what you mean about typing on the phone..I just can't do it al all..I use my iPad now...realised where there a will there always a way..be blessed.,:-) xxx
  • rachel76740
    rachel76740 dee2418

    Posted

    Dee so your legs and arms shake and feel so weak that you feel like there gonna give way .mine is the back hips and knees that's really bad at the moment .Dr thinks it's fibro but I'm not so sure yesterday my legs gave way in asda of all places .my hubby helped me to the car whist staff put our shopping threw the checkout .wen I got in the car the shaking died down but I was exhausted
    • dee2418
      dee2418 rachel76740

      Posted

      Oh poor you rachel, I've had that happen a couple of times when I've fallen and I feel people look at me like I'm either drunk or stoned.........wishful thinking? lol

      I went 2 years before I got a diagnosis and actually dreaded having fibro diiagnosed but actually now I'm glad I know what it is that I'm up against and I can begin to own IT rather that IT own me.

      My PMR was diagnosed Septemebr 2014 then 3 days before Christmas I got the fibro diagnosis. It's very early days for me really in learning how to better self manage it but I'm greedy for information right now.

      I hope you don't get a fi8bro diagnosis but if you do it's actually not the end of the world and like me, you'll kinow what you're dealing with.

      Take care and keep your chin up x

       

  • michelle17282
    michelle17282 dee2418

    Posted

    Hi Dee,

          I have to say aplaud you for working with these health issues. I have recently retired on ill health after years of not understanding what was wrong with me. I had the fibro diagnosis in October and am lucky with the support i have had from my manager and colleagues.

          Its the exhaustion more than the pain that i cant get used to. I'm really down in the dumps looking at the mess in the house and not having the energy to get up and clean. Looks like another day planning what i intend doing tomorrow, sadly tomorrow never comes!!!!!!!!!!!

        

    • dee2418
      dee2418 michelle17282

      Posted

      Hi Michelle,

      Thank you for taking the time to reply to me. I saw the replies in work onh my phone but can't type any replies on it so here I am, at home on the PC.

      I'm a lot like you Michelle, I look at the housework and feel swamped with it but then I do a bit of perspective taking and realise that if I dust then it will bge back tomorrow, if I hoover then it will still need doing tomorrow..........that's good enough in my mind to leave it. You say sadly tomorrow never comes and that is so true in my world right now but I embrace it instead of letting it defeat me.

      The exhaustion is the thing that's been really bad for me too but I don't think I realised just how badly I was sleeping. I was diagnosed with sleep apnoea two and a half years ago so have to wear a mask to keep my airways open every night and the differnce that made to my tiredness at the time was incredible. Move on a few months and I was back to being tired so Rhemy explained to me how fibro affects sleep and gave me amitriptyline,  I take 2 at night and I have to say it has definitely made a difference, I'm not waking up tired anymore and that in itself is a win win for me.

      Take care x

  • tootsi
    tootsi dee2418

    Posted

    Hi everyone, 

    i hate reading how much everyone is suffering, but thank you all for tips, advice and support. I have bought a cushion which you plug in and it heats up so you get as long as you want the heat instead of having to keep going to the microwave. Also an over blanket which does the same. I'm In constant agony currently on naproxen, dihydrocodeine, paracetamol, amitriptyline, vit d and no let up yet. I am going to try adding magnesium, coconut water and Epsom salt baths. I will take or try anything. Really struggling to work, and my house I can't keep on top of. I have a pip assessment next week, I just hope they listen and try to understand as like what quite often is said to me you look ok! , !! , ! Wow that just hurts even more, I know you will all understand how that statement feels.. I really need to stop working I'm exhausted and in so much pain I regularly look at my full draw of meds and feel like taking them all. Gentle hugs and best wishes to all xxxx

    • christine26761
      christine26761 tootsi

      Posted

      We'll done tootsi, for taking your pain into your own hands, like we all seem to have to often do.....those electric heat things will do wonders..it's just soo unfortunate that we seem to look ok to all the doctors,..if only they knew first hand. Then maybe there would be more empathy from them...Epson salts and vit d3 and Magnesium make a real differnce.we .just try anything....hooe your feeling better really soon precious..be blessed..xxxx:-)
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