Rheumatoid arthritis & Fibromyalgia

Hi ALL

Thanks for all the info and messages. I am so sorry to hear you are in so much pain some of you.

I have lupus and was diagnosed about 5months ago. I just have my sleeve done. I am not allowed to take my lupus meds for a few weeks till my tummy settles as I have had terrible loose bowels which empty at everything I eat and the meds have to be taken with food or they upset your tummy too.

I am still trying to settle into my first week of fluids adn without the meds I am very tired. I hope it gets better from here.

I know this thread hasn't been posted in for a while, but just thought I'd pop in and put my hand up as another member with Fibromyalgia. I was diagnosed about 8 years ago and I was sure that I had it for years before that. I remember, when I was at high school, if someone even tapped me on the arm I'd be yelling.

I feel like I've had a flare up for about 8 months now. Even now, knowing what I have, I feel so lazy. I can want to go back to bed after a shower. Getting dressed can exhaust me. I have a rest while cooking tea. The list goes on.

It will certainly help having almost half my excess weight off me, I hope I can do more.

It's lovely to see all these sleevers with their new lives. I can't wait to be one of them. :-)

Good luck with the Stilnox Mapmar. Don't worry about the after effects. I find it doesn't make me the least bit groggy the next day even when I have to resort to taking 2. It's brilliant in that regard.

Sleep well.

Hugs,

Be careful with opiates, apparently FMer's can have abnormal reactions to them. I know I do.
I can't take any codeine based painrelievers for the FM, I find they do diddly squat for the pain anyway and send me semicomatose for hours.
Have you joined the FM support group.
Yes vitamin d is important for us. Our levels should be above 125mmol/litre.
So is magnesium. But be careful of what form you take it in. The most common form is little more use than as an enema.
I take 2 tsps of Ultramuscleze (biocentuals brand) , 1 tsp in morning, 1 at night.
Also I rub 1 tsp of magnesium chloride oil (Echolife brand) on the back of my neck each day.
And the good old fish oil, I take 6 grams a day.(thats 6 tablets).
Heatpacks are my best friend!
The pain from Fm is so draining.

Yes Janey it is stillnox but "touch wood" I have not had any issues with it! I only take either 1/2 tablet or a full tablet if I know I have a really long day at work the next day....
The medication I am allergic to is Endep! amongst other allergies I have a mile long!
I have had shoulder pain a few weeks ago, stabbing shooting pain which nearly sent me around the twist.... had physio twice per week and only last week the muscles were good, so physio said "definitely fibro!" bugger I said my first bout.... So hopefully it was only a mild bout! Lisa, your bout sounds terrible! Not looking forward if I get that bad... yeeks! Fingers crossed you find something that works for you!
Heres to a good nights sleep for all of us! Hopefully we don't look like this in the morning -

Hi Mapmar,
I was diagnosed with fibromyalgia and early stages of rheumatoid arthritis about 4mths ago, until then I thought I was going mad... I am getting over a bad flair up at the moment (it was caused by having surgery to have the band out) and I am really fed up with being in constant pain. I think the worst part of having fibromyalgia is that you dont look like you have anything wrong with you so people find it very hard to understand what we are going through. I find it very difficult to get to sleep and usually only manage to get about 4 hrs sleep a night if I am lucky and I know that lack of sleep definately does make the pains alot worse. I take Endep in the evening and a couple of Mersyndol to help with the pain when ever I need them and when it gets really bad I have a couple of perscription pain killers that I can take, I practically live on paracetemol and codeine.. My Surgeon is going to arrange for me to have extra pain meds available to me after I am sleeved to take home with me from hospital as I have found it very difficult after my last surgery.....
I hope the extra anti-depressants and the sleeping tablets help you, also get your Vitamin D levels checked as my specialist said that low levels can also increase the fibromyalgia flare ups..

Good Luck

Lisab

Good luck with it all Mapmar. Let us know how you get on with the new tablets.

Stilnox I presume? Be careful as it can make you do funny things. I take it regularly and find that I get incredibly hungry once I've taken it and one morning I woke up with food wrappers around me. I am not joking. I got up and raided the pantry and I can't remember doing it. When taking it I now take a snack to bed and eat it immediately after swallowing the tablet and this seems to have solved the problem. I looked at it as funny and chose to laugh about it but it can play with your mind. If it's not Stilnox then have a good laugh at my plight, ignore all of the above and have a good night's sleep.

Hugs,

I just have been through my first bout of fibromyalgia .... I was diagnosed last year but only had a bout which I am just getting over. I went to the GP yesterday to get my referral for the surgeon and mentioned it. She said I could take this medication which could help.... only one thing.... I am allergic to it!!! So she uped my anti-depressants and gave me a script for some sleeping tablets as I noticed this last week or so, if I get a good night's sleep I am better the next day. Fingers crossed I don't flare for awhile... it is nearly over... still a bit achy!

Hey LavenderRose,
I'm sorry to hear you're going through all that! My mum has Lupus, originally she wanted a band but was told it could be hazardous for her to have the port (for the same reason you mentioned, immune system attacking foreign body). She also has Sympathetic Reflex Dystrophy, which is a chronic pain condition, so her sleeve was still fairly risky. Happy to say though, she's had no problems with her sleeve (she's now about 6 weeks post-op), and she's lost around 15kg, which is already easing a bit of her joint pain from the lupus. It was discovered in my pre-op blood tests that I have the markers for an auto-immune disease as well, so I'm sposed to be getting that looked into now... I'm a bit scared to though, really.
Anyway, all the best, I hope your surgery helps you too. Hang in there!

Wow Miss Lavenderrose,
I am sorry to hear that you are unwell. I had no idea that the band could react so badly with those illnesses, however I did know that the band can be rejected. I dont have those illnesses you are talking about, but I do know what it is like to have a band in, and not lose much weight. I dont want to bag the band, as I am sure you dont either, but my experience was very painful and scary.
All I can say to you (And I was just thinking about this exact thing yesterday!!) is that I had no idea how unhealthy I truly was, until after I was sleeved. My band was removed, which in itself was a releif for me, but then I was sleeved, and I cant explain to you how healthy I am feeling!! My skin is clearing, my weight is dropping, and I feel so much better as a body mind and soul. I wish I could explain to you better, but I just cant. I really hope that you start to feel healthy again, and get those illness back under control.
Please let us know how you go.
Hugs,
Hayley

Hi Lavendar Rose
I'm sorry that you're in so much pain, and December seems to far away to have to wait to have your surgery when you're in that much pain, too.
I do not have RA, but I do have OA and I have fibromyalgia too - so does my mum.
I'm guess I'm lucky because my FM is nowhere near as bad as my mum's got, but maybe that's because I have a lot of other health issues and go to the doc regularly, and the chiropractor, and the osteopath, and the massage therapist...whereas my mum won't even get to the doc until way past when she should.
The drug names you use are not familiar to me, but I do know that there are some anti-depressants that have been prescribed for fibromyalgia that have been very helpful. Mum uses Prothiadin and swears by it. I take a different anti-depressant for depression, so maybe that's another reason I didn't get as bad as her.
The other thing I have noticed is that my pain level has dropped considerably over the last 6 months, when I have been steadily losing weight. I'm now 37kg lighter than I was in January, and my pain meds have been reduced considerably.
Good luck on your journey, Lavendar Rose.
Chris