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  1. #31
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    Hi everyone, I hope you are all having good days unfortunately I am not. The bug I picked up just doesn't want to leave and now after a week of it I am having difficulty even moving let alone doing everything else I do in a day. Today seems to be particularly bad so it looks like poor Ds2 18 months will be spending the day camped in bed with me which makes me feel like the worse mother ever i am just glad I talked DH into getting foxtel in our bedroom so I at least have disney jr to help keep Ds2 somewhat amused. I have read all the other posts but did see talk of a sleeping pill with endep I have found restavit works fantastic but only if I have 1 tablet a hour or so before then endep then another one with it.

  2. #32
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    Loodle, don't feel bad about being stuck in bed with DS. It's better to do that for a day rather than struggling to be mobile over a few days.
    We dont have foxtel, but I use the T-box to record a few shows that I don't normally get to see such as Love Child and MKR, and if I'm having a particularly bad day I curl up with DS on my lap and watch them. DS (5 mths) naps 10 min at a time during the day, and wakes hourly at night, but if I give in and let him nap in my arms then he sleeps for around 30 min. I worry I'm creating bad habits, but then I think 'Oh bugger it' as it allows both of us a rest

    Beebs, here is a link to an EDS site that has pretty good info regards the types and symptoms http://www.ednf.org/index.php?option...tpage&Itemid=1
    It's American unfortunately, so the support info and stuff isn't valid for here, as it's still very hard to find support in Aus for both Fibro and EDS. In fact, Fibro is still not an 'official' disability in Aus and EDS still has a way to go, but both are classified as disabilities in the US, so funding here is very low and a Dx is often hard unless your GP/Rheumy has had experience and/or training regarding them.
    Also, the Arthritis foundation in your state should be able to help if you feel you need support to look into it further, as a number of people with RA often have undiagnosed EDS or Fibro.
    EDS is hereditary, whereas Fibro usually starts from a number of health issues. EDS of course is one, but my Fibro started not from the EDS, but instead from Glandular Fever like a PP. Trauma to the body and/or immune system is the most common cause, so with your history it would be worth getting checked out for both.

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  4. #33
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    Quote Originally Posted by maranoa View Post
    Hi ladies do any of you have endometriosis as well?
    No i don't have it.

  5. #34
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    No I don't have endo but I do suffer from recurrent ovarian cysts which horrible and drive me nuts.

    @mamaof4 I actually find the imovane great, I used temazapan for ages which left me groggy. I have had stilnox but didn't sleep well on it. The imovane I don't find groggy of hungover in the morning which I did on the temtabs.

    I saw my GP this morning and agreed that 50mg was probably too much and to try 25mg. I'm hoping I can cut the tablets in half seeing as I've got just about a whole packet left.

  6. #35
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    Quote Originally Posted by ICanDream View Post
    No I don't have endo but I do suffer from recurrent ovarian cysts which horrible and drive me nuts.

    @mamaof4 I actually find the imovane great, I used temazapan for ages which left me groggy. I have had stilnox but didn't sleep well on it. The imovane I don't find groggy of hungover in the morning which I did on the temtabs.

    I saw my GP this morning and agreed that 50mg was probably too much and to try 25mg. I'm hoping I can cut the tablets in half seeing as I've got just about a whole packet left.
    It's strange but the 25mg tablets have a groove, so snap in half, but the 50mg don't! I decreased to 25mg while pregnant so used one of those pill cutter things from the chemist, as every other way I did it made it fall to bits.

    You've got me thinking about the Imovane. When I tried it(long time ago tho), it was a small fluid filled capsule, that I would squeeze some out of as it was just a bit strong for me. But am I right in thinking you are describing a tablet? Do you know if it can be cut in half?
    I really want to try something different to the Stilnox as it works well for me, but so darn expensive! My medication costs roughly $100/wk as only some are under the PBS. I usually hit the safety net for PBS mid year which halves the weekly cost, and I remember the capsule being under it, but was wondering if you know about the tablet?
    I hear you on Temazapam, that stuff seems to take forever to get out of your system, I tried it two nights in a row when younger and swear I was a zombie for a week

    Hope the Endep settles for you, and I found I chewed lots of gum in those first few weeks

  7. #36
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    @maranoa, give the Arthritis foundation in your state a call, as they often have contact info for GPs who can dx/treat Fibro. If they don't, they should be able to direct you to someone who will. It's annoying, but there are a number of health professionals who don't know or understand Fibro, so deny it exists

  8. #37
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    @mamaof4, I too have a pill cutter and I reckon I managed to get it pretty much half (maybe just a little off but close enough).

    The imovane is a white kind of oval shaped tablet which is 7.5mg. You can snap it in half very easily so I just take the half and I have no hangover type effect from it. I have definitely found it to be the best one I have taken. It's $25 for 30 tablets but if you can make do with the half it really stretches it out. My GP can give repeats on these too, but they never used to on the Temtabs so I had to be vigilant of when I was low and get to the GP before a weekend in case I ran out - was a pain.
    @loodle, please don't be upset about having a day in bed. Sometimes it just has to be that way, I'm sure my Kids have had days of watching far too much TV or games than what they should but hey it's what I had to do to get through.

    Truth be told I have fought the label of Fibro for years - I have been dismissed by so many doctors when I mentioned that I had been diagnosed with it that I ended up not even mentioning it. But I am at breaking point with various pain and insomnia that I have to try something and if accepting Fibro and taking the Endep can make me feel more human then I guess I have to give it a go.

    I started a new fitness session today which was more full on than my personal trainer does so I'm sure I will be crawling around tomorrow from the pain but it felt good to push myself.

  9. #38
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    Hi Ladies, I saw this thread and thought ohhhh this is soooo me!! I have a long history of chronic illness starting with Bilateral talipes at birth which has lead to 6 lots of surgery and severe arthritis in my feet knees and back, Ovarian cysts - the pain started when I was 9yo and took 3 years to figure out what was wrong. 13 Surgeries later I was also told I had endo too. As a teenager i had 3 bouts of glandular fever which has lead to chronic fatigue and IBS. My CF wasn't diagnosed until my mid twenties after lots of tests to rule other illnesses out. I'm lucky I have a great GP who is rather knowledgeable about CF. I have also experienced continual UTI and pyelonephritis. Specialist has never been able to pin point a reason for this and I spent two year solid in and out of hospital on almost continual low dose and intravenous antibiotics. In 2009 I began experiencing severe abdominal pain, both my GP and myself figured more cysts so I went off for an ultrasound only to be told I was pregnant. Thankfully I was laying down lol best day of my life once I got over the shock. My pregnancy helped settle my chronic fatigue and kidney issues and other than my internal scar tissue which stretched as my baby grew and sent me to hospital more times than I can count during the first 4 months of my pregnancy. Eventually the pain settles but unfortunately the pelvic pain started. Around 30 weeks I was diagnosed with gestational diabetes and my pelvic pain was more severe. I spent a lot of time in and out of hospital for the next ten weeks, thankfully it was only with pregnancy complications. My DD was born after being induced at 38 weeks as my diabetes was almost uncontrollable by then. Delivery was smooth and until recently I have had no chronic issues. My second pregnancy with the help of a FS was heaps better (gestational diabetes again but not as bad) than the first no scar tissue as i had to have that removed a few months after the birth of DD1. The last few months I have been experiencing some severe fatigue which I am slowly getting a handle on. Am also planning on bubba no 3 later this year or early next year if things go to plan. In the last 7 years I have been involved in 2 car accidents, the first minor the second moderate to serious but thankfully walked away with a neck injury along with bumps bruises and unfortunately some PTSD. Soooo currently on workers compensation and DSP (have been on DSP for over ten years and it took a lot of doing!!) and am being redeployed to another job if I can find one. I will never be able to work fulltime again thanks to CF as it stresses my system and my body goes into major meltdown. So that's my story, i've tried to be brief and I know I've missed stuff out. Looking forward to chatting with you all in the future

  10. #39
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    Thanks @ICanDream, I think I might raise it next time I go the the GP re Imovane, as that cost is much lower. I've been on the same dose of Stilnox for around 10 yrs, and it works out at around $25/wk. I'm lucky as my system only tolerates the cheapest generic version, which is around $15/pk. The branded Stilnox is anywhere between $30-$40/pk here, but it does not work at all with me!

    Actually, this is something I'm really curious to know for those of you that have either EDS, Fibro or Immune system disorders. Do you find your body will not absorb some medications, but will with others? Have you ever tried different brands of the same medication, and had different reactions? Or had it work via IM injection but not orally, or vice versa?
    For the Stilnox, I have 2 generic brands that work, but none of the others do at all. While pregnant I had severe morning sickness, and the maxalon tablets did nothing, but daily IM injections worked well. I also don't absorb iron properly, so have had regular transfusions. There are a few others as well.
    My pharmacist said it could be to do with the binding ingredients used, as different brands can use different bases.
    @nelle7250, welcome. I used to live in L'ton, and found that there are quite a few good GPs around. My dad has an excellent one that also helped him in applying for DSP due to issues stemming from a broken back. TBH, I've been considering moving back up and re-doing my application.
    In my OP, I described the two yr battle I had over the DSP. My GP did the original paperwork, and described everything he could, but a lot was missing. He takes ages to get into, and appts are very rushed as he is often several hours behind, plus I hadn't been seeing him for long. He strongly disagrees with the rejection, but I really don't think he would have the time to write my whole history, which is pages and pages.
    So I'm tempted to move back, and see my old GP, who has all the files. I also didn't see anyone face to face at C'link regarding the application, yet my dad said that in L'ton he did? I was wondering if you did as well? I've also had people mention that I should be able to request a home visit, as the set up shows the things I'm required to use, but they never mentioned it, so I was wondering if you might know? Because the C'link social worker believes that would help, and I am now quite obviously disabled, as the damage has become visible.

    Sorry for all the questions, I guess I'm trying to regain a bit of confidence in order to fight back. I'm currently on the pull out chair as I usually crawl for the first few hours each morning, so I'm giving my lovely red knees a rest.
    It's kinda ironic that the woman who looked at my appeal turned it down due to not having lost a limb, and not being in a wheelchair full time, as I tried to explain to her that our house is an old shack and tiny, and a wheelchair completely fills the lounge! I tried it before-I jump in, and roll around 1 metre to the kitchen, and can't get anywhere else!!
    DH filmed it to make a point

  11. #40
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    Hi to all. I hope you're having a low pain time.

    I went back to my Dr last Friday to find out about the blood tests. Everything came back good except my inflammatory marker is up to 52. It was 46. My vitamin D was lower but she said that doesn't explain the pain I'm getting. She can only put it down to me having a long and bad flare. So now she's got referrals put through to public Rhuematologist and orthopedic specialists. Also trialling a longer acting anti inflammatory, Mobic. I'm not sure it's really working though. I'm still getting the bad aches and pains.
    I'm really over the whole body aches and that walking feels like an effort.
    I am really disliking the school drop off and pick ups because of the walking from my car to my DS' classroom. It doesn't help my left knee and foot are really sore today and yesterday
    Sigh!
    I bought new joggers today, but the tounge part moves too much and shoes feel too loose so I've gotta take them back tomorrow. Hoping that new shoes will make my feet less painful to walk.


 

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