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  1. #21
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    Quote Originally Posted by ICanDream View Post
    I was diagnosed with sarcoidosis in feb 2005. Following that I was diagnosed with fibro, costochondritis, bursitis, sub clinical Graves' disease and osteopenia. Last year I also had a cardiac ablation due to dual pathways and my heart racing up to 200bpm for no reason. I also suffer from tremors, facial spasms and twitches but they don't know why. I've been on and off steroids since 2005 and just last night started endep (didn't have a good start, hardly slept at all as I decided not to take my sleeping tablet just the endep). I work 3 1/2 days a week and find the busier I am the better I am as I'm distracted from the pain. I'm sure I don't do as much with the kids as I should but some days I just don't have the energy to do it.
    ICanDream, in regards to starting Endep, do you mind if I ask what sleeping tablet you are on, and what mg of Endep? If you prefer not to say here, pm me if you wish
    There is actually a particular one that works very effectively in combination with Endep, and several pharmacists that I deal with daily have told me that are often prescribed together.
    I use the two together, as my body clock is most active overnight which is sommon for Fibro, so do not sleep at all without them, and only stopped them when working night shift as my body will actually slow down for sleep at about 9am.

  2. #22
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    @mamaof4 I'm on 50mg nightly of endep and I was taking half an imovane 7.5mg tablet (so 3.75mg) but since starting the endep I stopped the imovane as it knocked me out too much. I'm hating the endep - dry mouth, sour taste in my mouth, not sleeping, not much improvement in pain, and a constant grumpy mood and a few other issues. I'm seeing my GP tomorrow to discuss dose and see what she thinks.

  3. #23
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    Quote Originally Posted by PurpleButterfly4 View Post
    Thanks Beebs. I've asked a few ppl and Drs, they just think it's more hormonal and with the IBS for me than to do with Fibro. I think having a heap of tonsillitis crapped up my system and all the antibiotics I had to have wouldn't of helped.

    As far as I know my Mum BF me the whole time. I will have to ask her but she prob say she can't really remember. Her memory isn't so great.

    I am having an awful morning and yesterday was crap to. Yesty I woke with my right wrist hardly able to move and most fingers on both hands swollen and sore. I had the flu achy feeling as well. I also had a slight panic attack and AF started
    This morning I woke around 3:30 shivering and the left wrist paining badly and a few fingers on both hands swollen and sore. I had to get up and put on warmer clothes and I had a few crackers so I could take pain killers. Back to bed and still in pain. Tossed and turned, and I was so achy from shivering. Last time I saw the time it was 5-ish. My DS then came in about 6:35am. I dozed back to sleep and then woke again 7:35am. I had to get up to do the brekky and school run. I usually help in DS's class with literacy Wednesday mornings but I'm home now and I'm going to go to sleep as long as my body wants it. I just hope I wake up feeling better.

    i get the flu like full body achy pains feverish shivering loads! Its awful makes my hip/back and neck pains worse, now im pregnant i can take painkillers either lucky my symptoms haven't been as bad as usual to need strong painkillers it stays that way!
    hope your wrist is better

  4. #24
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    @ICanDream, I had the same issue with Imovane. I always felt really blergh and hungover from it.
    In regards to the Endep, it may be worth talking to your GP about trying 25mg instead, as 50mg is a pretty big dose so it's no wonder are feeling cr@p. The side effects do settle down after a few weeks, and it can really help once your body is used to it as it's a bit of a multipurpose medication, but theres also a chance it's simply making things harder for you.
    It's designed to help with several things, mostly pain, sleep and depression. For me, it only helps me not keep waking fully after around 1am. I still consciously wake every hour or so, but before I was having to get up from around 2am-6am. It doesn't work for me to go to sleep though.

    Stilnox is actually what works best with it, which despite me using the two together, I didn't actually know until my pharmacist told me. Since then I've asked a few Drs & Pharmacists about that, and they all said the same. Unforunately due to some misusing it (Grant Hackett is a prime example) there is a lot of bad press & misinformation about it.
    I'm one of a few people who is on it long term, so if your GP ever looks at trying it, on its own or with Endep, or you would like to know the pros & cons then let me know

  5. #25
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    Quote Originally Posted by beebs View Post
    This is me too. I've had slightly elevated ESR and CRP in the past, but no autoimmune markers ever. Which makes it really annoying, and which is why I call my arthritis connective tissue instead of RA or psoriatic or any of the other ones. My rheumy is absolutely sure it is Autoimmune, but after 8 years they still can't figure out which one. Kind of drives me crazy a bit to be honest - I'd rather just know what I was dealing with.

    Also, my immune system is shot to pieces, but talking to my immunologist the other day and he said there was absolutely nothing in my bloods that would point to immune system problems. In the last 6 months I've had influenza, pneumaccocal pneumonia, two other chest infections and 3 middle ear infections.

    Do you guys think that that is more of a an "Autoimmune thing", weakened immune systems I mean - and if so, does anyone show up anything in their bloods showing that your immune system is weakened or damaged?
    beebs, have you thought about being checked for what I have? It's called Ehlers-Danlos Syndrome, and there are six (I think) types, but sometimes you can have some symptoms of more than one type.
    Autoimmune symptoms along with the arthritis/connective tissue issues are a big part of it, so can problems with your oesophagus and/or stomach.

    I have arthritis in my joints from it, and huge issues with my immune system. EDS Type 3 (one of the ones I have) causes problems with connective tissue, and your body doesn't produce collagen properly. I have had severe ulcers through my stomach and up my oesophagus for around 5 years now...Iv'e been on the waiting list for surgery for that amount of time

    Got to go and bath bubba, but will find a link to an EDS site for you

  6. #26
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    Hello Girls!
    I'm a ME/CFS sufferer since 2004 and have Orthostatic intolerance (like the guy from the Wiggles). I'm 36 weeks pregnant with gestational diabetes, still on daily Zofran for vomiting and two weeks ago I got Bells Palsy!
    I'm on a low dose beta blocker which is AMAZING! Some of my ME/CFS symptoms have lessened this third trimester so I'm absolutely hoping beyond hope I've possibly "reset my hormones" and it continues after bub is born.
    I have a gorgeous husband who is just wonderful but we do lead very separate lives at times as I'm always too sick to keep up with life. I work 30 hours a week in a job I love.....I'm going on maternity leave tomorrow-yay! Work keeps me sane so I'm a little worried about not being there.....I feel like my illness has taken mostly every other thing out of my life and take pride that I am working-even if that is all I do.
    Anyway enough about me!

  7. #27
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    I have never been checked, although my dad died at 45 - and there was talk it could have been Marfans and my DS3 who is 4 years old has been presenting with joint pain and hyper mobility for 2 years now - JA has been ruled out, so they are now in the processes of making sure it isn't one of the EDS type things.

    Why would no one have ever mentioned it to me I wonder? My Rheumy thinks psoriatic arthritis maybe? Maybe RA - but I never, ever show up on bloods....


    Quote Originally Posted by mamaof4 View Post
    beebs, have you thought about being checked for what I have? It's called Ehlers-Danlos Syndrome, and there are six (I think) types, but sometimes you can have some symptoms of more than one type.
    Autoimmune symptoms along with the arthritis/connective tissue issues are a big part of it, so can problems with your oesophagus and/or stomach.

    I have arthritis in my joints from it, and huge issues with my immune system. EDS Type 3 (one of the ones I have) causes problems with connective tissue, and your body doesn't produce collagen properly. I have had severe ulcers through my stomach and up my oesophagus for around 5 years now...Iv'e been on the waiting list for surgery for that amount of time

    Got to go and bath bubba, but will find a link to an EDS site for you
    Last edited by beebs; 06-03-2014 at 20:40.

  8. #28
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    Quote Originally Posted by maranoa View Post
    Hi ladies do any of you have endometriosis as well?
    Yes I do

  9. #29
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    Quote Originally Posted by maranoa View Post
    Hi ladies do any of you have endometriosis as well?
    It seems I may have something like Endo, I am supposed to have a Letz, and cervical biopsies. But I've been putting it off because I am too scared!

  10. #30
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    Quote Originally Posted by maranoa View Post
    Hi ladies do any of you have endometriosis as well?
    I did before my first child was born, and had a whole history of related issues, so had a few surgeries. After my last surgery I was in Special care for a bit, and told I was infertile. Six weeks later I fell pregnant with my eldest. After her birth it all settled right down, and 15 yrs on its fine!

    Beebs, I'm on DHs iPad so am not sure how to link, but I will pop one up for you in the morning. You really have some strong markers for EDS, and that could also be why your bloods are not showing anything. It's hereditary, so it could possibly be why your son is hyper mobile. My eldest has it, but we are unsure with the other 3 . Things such as flat feet are very common, but hard to tell with kids as a lot have flat feet anyway until a certain age.

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    beebs  (07-03-2014)


 

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