newbie here, fibro and hs sufferer. xx

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newbie here, fibro and hs sufferer. xx

Postby ladybumblebee » Fri Nov 25, 2011 10:07 pm

hi everyone :wave: , i only found out recently that what ive suffered with for many years is fibro. as mentioned above i also suffer with hidradenitis suppurativa so my main question at the moment i guess is how do people like me deal with exsercise?? ive read loads about one of the things that helps is gentle exsercise but for me thats alot harder than most :cry: . for those of you that dont know what hs is, i suffer with large, red pus filled painfull lumps in and around my vagina, groin, thighs, breasts, armpits and face. apart from the fact that its a autoimmune desease so im always tiered anyway, it also means that i pick up bugs and illnesses really easy. so id like some advice on some way of making the fibro symptoms better with out aggrevating my hs. things that make hs flare are stress, sweat, friction just to name a few so u see why taking up exsercise is so hard for me. if anyone has any experiance with this or has any ideas im open to them all. would be nice to not have to suffer with so many different things all in one go seeing as like hs there is no cure :cry: :cry: . look forward to getting to know u all xxx
may the splinters on the banister of life always point down ;)
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Re: newbie here, fibro and hs sufferer. xx

Postby FluppyPuffy » Fri Nov 25, 2011 10:29 pm

:welcome: to our little sanctuary ladybumblebee :wave: :wave:

There is a lot of advice and info on here, so hopefully there will be some helpful bits for you :fingerscrossed: :fingerscrossed:

As for the HS, I haven't heard of it, and I can't recall anyone on here with anything like what you've described either :facepalm: :facepalm: With what you've said about it, I can't begin to imagine how it must be for you, living with the discomfort you must have with that, as well as FM on top of it :hugs: :hugs: :hugs: :hugs: :hugs: TBH when I saw the letters and started reading, I thought it might be something related to joint hypermobility :oops: :oops: :oops: :oops:

I'm not sure what you could do exercise wise that would have a minimal effect on the HS. My first thought was something like hydrotherapy, but there's a good chance any chemicals in the water could aggravate things even more for you :facepalm: :facepalm: You never know tho, someone may have the answer to that for you :fingerscrossed: :fingerscrossed: :fingerscrossed:

Anything you want to know, just ask and we'll try to help you with an answer :wave: :wave: :wave:
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Re: newbie here, fibro and hs sufferer. xx

Postby ladybumblebee » Fri Nov 25, 2011 11:23 pm

thanks fluppy puffy (thats such a mouthfull lol). i had a look to see if anyone else on here had hs but didnt see anyone so looks like im completly unique lol. the hydrotherphy sounds soooo good i would love to give it a go but the closest place to me is about 10 miles away and dont drive and really dont fancy walking :lol: so mite not be an option. how about medication? im sure u will prob tell me im on everything the doc can give me but if i give u a list :roll: maybe u can tell me if theres anything else i can try lol.
60mg codine 4 times a day
100mg tramadol at nite
60mg amitriptiline at nite
paracetamol every 4 hours
ibuprofen 6 per day
i know ur probley thinking i must rattle or be completely numb but it isnt so im affraid :cry: . im still in alot of pain. i feel everyday like ive been working out at the gym the day befor and between the hs pain and discomfort and the fibro aches and pains i dont get alot of quality sleep which i think just makes things worst. maybe theres some tips on helping to settle to sleep or making the most out of the little sleep i get so i dont feel so blah? i get the feeling im gonna be a lost cause :cry: but i cant tell u how nice it is to be able to get things off my chest to people who understand xxx :hugs: :D :D :D
may the splinters on the banister of life always point down ;)
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Re: newbie here, fibro and hs sufferer. xx

Postby FluppyPuffy » Sat Nov 26, 2011 12:14 am

This linky has info about meds used for FM http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx There are different thing to try in various combos to find what helps you.

Been doing a bit of Googling about HS. There isn't an awful lot that I can see about treatments etc, but I did find these linkys. If you've haven't come across them before, there might be some useful stuff on them http://uk.groups.yahoo.com/group/hs-uk/ http://hsf-uk.find-forum.net/
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Re: newbie here, fibro and hs sufferer. xx

Postby ladybumblebee » Sat Nov 26, 2011 1:53 am

Thanks hun. I am lucky enough to be a member of a couple of great and really helpfull hs support groups but theres not many like me with both (there is one or two lol) so ive had some advice from them but its limited because they kinda have to choose which is more important to deal with if that makes sence? I know meds will be limited cos lets face it im on pretty much everything lol and i know there wont be many excercises i can do but u never know something mite pop up on here and i'll think ooo havent tried that yet lol. As for hs info lol its pretty useless! I nearly had a heart attack when i was offically dianosed and i looked it up. They really emphisise (sorry rubbish speller lol) on the worst case senario and scare people a bit and most of the things people read about it just isnt true. They make out that anti biotics can cure it or that u get it cos of shaving or not washing enough but tis nothing to do with any of that and as yet there is no cure. Sorry im ramblin lol. It really does mean alot that u took time to find out more about it, its so nice to have the hs group but they dont understand the fibro side of things so im really happy i found this forum so i can find hints and tips and chat to people in the same boat. Thanku again hunni xxxxx
may the splinters on the banister of life always point down ;)
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Re: newbie here, fibro and hs sufferer. xx

Postby loubie » Sat Nov 26, 2011 3:48 am

hi and welcome to the forum :wave: :wave: :wave:

i have to say that i had never heard of hs either
had a look at the linkys flup put on and :yikes: they look very painful :hugs:

the meds you are already on is what a lot of us are on to, we are all rattling
on here so you will fit in just fine :lol:
reading about rs its a bit like fibro as stress makes us worse to, so you are already
doing things right i would think by trying not to have to much stress around you,

just read as much as you can on here and i am sure there will be little hints and tips you will
pick up :D anything else just ask and we will do our best to help :wine:
loubie xx

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Re: newbie here, fibro and hs sufferer. xx

Postby ladybumblebee » Sat Nov 26, 2011 4:41 pm

ah thanks loubie hun. i did kinda figure i wouldnt be able to do much med and excercise wise cos of being on most meds and not being able to move much but u never know there mite be something i havent tried yet that will make all the difference :fingerscrossed: .im one of those lucky people :roll: god must have looked at me and said yeah that one will be strong enough to deal with everything i throw at her so lets have sum fun :lol: anyway thanku for the lovely welcome hunni :blowkiss: :wave: :wave: :wave:
may the splinters on the banister of life always point down ;)
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Re: newbie here, fibro and hs sufferer. xx

Postby ribbons » Sat Nov 26, 2011 5:25 pm

hello and welcome x
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Re: newbie here, fibro and hs sufferer. xx

Postby ladybumblebee » Sat Nov 26, 2011 8:12 pm

:wave: hi there. thanks hunni. :hugs: :blowkiss:
may the splinters on the banister of life always point down ;)
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Re: newbie here, fibro and hs sufferer. xx

Postby Ouchy » Sat Nov 26, 2011 8:18 pm

:wave: Hello glad you decided to join the forum :D
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