Battle on or admit defeat?

As many of you know I've been taken off my drugs for connective tissue disease. Since then the first week or two were ok then bam it hit me. First my knuckles in my hands started to feel stiff & sore & now 6 weeks later I'm in agony, my hands are so sore doing anything hurts, my shoulders & elbows are incredibly sore & my big toes and ankles are swollen & sore. To the extent that I could only manage half of the session at college last night & got to the stage at work today where if I didn't leave early I'm not sure I'd have got home.

My GP has referred me back to the head of the team this dr is in saying I won't see the same dr after he told me fibro is cureable if I want it enough.

Tomorrow I'm supposed to work from home but I don't know if I can as I'm exhausted and in so much pain. My GP has said we can try steroids in either injection or tablet form but I'm worried that if I take them that the inflammation won't show up on my blood tests on 3rd May & the hospital won't believe how swollen & sore I am.

My GP always encourages me to keep working as much as possible but I'm very tempted to ask him to sign me off for the next week as I'm in so much pain. It's only 6:30 but I've already had my max dose of morphine for the day. Goodness knows how I'm going to sleep tonight. I'm only still up now because its my daughters birthday today (mine on Friday).

So do I keep battling on or just ask my GP to sign me off & what about the steroids? The hospital rarely see my inflammatory markers raised as my GP always does something about it. I certainly don't want to be on steroids long term again as I had to battle to lose 10kg of the weight I gained last time I was on them for 4 years.

9 Replies

  • Hi SuzyB,

    It would be a good idea to get signed off for a bit if you feel rough. Don't think of it as 'giving in' more a case of 'regathering' your resources'!

    If you have some steroids from your Doc, ask him to get a blood test beforehand, and take a copy of the results to the hospital with you, so they can see your inflammatory markers before treatment.

    If you are on steroids long term, you will inevitably put on a little weight consisting mostly of fluid. Steroids increase your appetite, tho', so unless you take measures to prevent it, you will put on a good deal of fat as well.

    I would always recommend an eating plan to maximise the amount of satisfying food you can eat, whilst keeping calorie intake on the low side. This should keep your weight gain to a manageable minimum.

    I find Slimming World and Weight Watchers both good, but SW is cheaper and easier. If you don't want to go to the clubs, you can do it online.

    I hope this is helpful.

    Moffy x

  • Thanks yeah I don't think it was water last time I put on over 18kg and have only managed to lose 10

  • Only a small bit will have been water - and that's unavoidable. It quickly disappears after treatment ceases!

    The rest of it is the result of extra appetite from the steroids, so your only option is to be fairly strict about what you eat if you're on these drugs.

    When I'm on steroids I stay on the SW diet, which is very easy and enjoyable, and though I do get a puffy face, I rarely put on more than 2kg - nothing if I'm careful.

    Do give it a try - you'd lose the remaining 8kg in no time! :)

    Moffy x

  • Hi Suzyb would you not consider a trip to A&E i know that it is for emergencys but its sounds to me that this is an emergency they would do your blood there and get results back quicker im not saying go by ambulance perhaps someone could take you Best Wishes

  • No I really wouldn't like to trouble the a&e team. I know it's not life threatening or limb threatening no matter how much it hurts. I'm going to take some tramadol tonight. I will probably call my GP tomorrow & see if I can get an appt

  • Could you not get your GP to run all the blood tests asap, o that you could restart treatment and still have the test results to show the rheum team?

  • Gentle hugs. It isn't giving in by asking your GP to sign you off. You are hurting and need to put what you need, first. And that is allowing yourself some rest.



  • I spent all of today in bed :(

  • If you don't think your GP would sign you off, would you be able to get hold of a self certificate for 7 days? I don't think it's called that but can't remember what itis at the moment! If he is willing to sign you off perhaps try and get a couple of weeks as you'll benefit from the much needed rest.

    I really hope he would be willing to run blood tests sooner rather than later gor your sake. As for saying that fibro is curable if you want it enough! Well, we'd all be cured in no time.

    Take care. I hope things work out for you and quickly. X

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