Hi i have fibo does anyone have bladder probleams with there fibo and burning of my skin if anyone touch me i be going though the roofx
Bladder probroblems: Hi i have fibo... - Fibromyalgia Acti...
Bladder probroblems
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cathy1110
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63 Replies
•
Hi cathy1110
I am so genuinely sorry to read this and I have pasted you an excerpt from the Fibromyalgia Symptoms website cache on Urinary problems:
Urinary and pelvic complaints are common symptoms of fibromyalgia, particularly in women with the disease. Bladder incontinence, urinary frequency, and painful sexual intercourse are just a few of the urinary disorders and pelvic symptoms that fibromyalgia can cause.
If you have fibromyalgia and think that your symptoms may indicate a problem with your urinary tract or pelvic area, consult with your doctor. Your pain and discomfort can be minimized, helping you to live a more active and fulfilling life.
I have also pasted you a link to the NHS Choices cache on Peripheral neuropathy - Symptoms. I would talk to your doctor about both of your symptoms just to get other medical conditions ruled out of the equation:
nhs.uk/Conditions/Periphera...
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
All my hopes and dreams for you
Ken
Thankyou ken
One of the drugs for incontinence is called Oxybutinin and Julie has used this for a few years now and it really works well for her. Good luck my friend.
All my hopes and dreams for you
Ken
• in reply toTheAuthor
I asked my GP for a trial on those for facial menopausal sweats and then found out they can help. However, I'm on such a low dose that I think I'd have to go higher than 2.5mg for them to help...then you'd get the dry mouth which I have with Sjögren's...it's never easy! Glad they're helping Julie though x
TheAuthor• in reply to
Hi Hidden my friend, that really is a very low dose. Shame you cannot get it raised? Take care my friend x
Hi cathhy1110, yes my fibro does affect my bladder, the urge to see becomes very strong and is really sudden, I can't hang on and have had to start wearing pads yuk! They're for old people right? When I initially get the urge, it's quite painful, the odd thing is that I don't always really really need to empty my bladder, sometimes it's just a trickle and this doesn't happen all the time, it helps to drink plenty so you're urine doesn't becom6to concentrated, and conversely that helps with the pain too. Would get it checked that there's nothing gynae going on, I did.
As for the general pain, I think most fibro chicks have times during flared when your body just doesn't want to be touched, not even with clothes, I keep a couple of sets of really soft Pyjamas for those days, my OH can't even put his arm round me cos it hurts, hard when you're having a grizzle and want a cuddle!
I have peripheral neuropathy and use Pregabalin, and Butrans patches, I also get Zaicin cream, weird stuff, made from capsicum( peppers ) don't know how it works but it does. Lots of us here use it .
I'm so sorry you're having a flare, and I hope this is helpful if only to let you know you aren't alone, our Ken has given lots of brilliant advice as usual, can always rely on him!
Lots of cloud hugs my dear, take care xx
The bladder problems you describe pretty much sum up mine. I was prescribed Tolterodine to help and it does make quite a difference. The main down side is that it gives you quite a dry mouth (although it does ease after a while).
Thankyou
That's interesting mistymeana, didn t know there was med that could help, I have a really dry mouth and eyes and there's a suggestion of Sjogrens so maybe why my Rheumy (who is excellent ) hasn't suggested it, but think I'll ask about it .
I have dry mouth and eyes too but, like a lot of things fibro, it comes and goes. I have eye drops and an artificial saliva spray for when I need it (although I only use the latter when I really need to as I think it has a bit of a soapy texture to it). I tend to just make sure I drink plenty, even if it does mean more loo dashes. Good luck with your Rheumy. It was my GP that identified the cause of my bladder probs and prescribed for me.
You have a good GP!
I have Biotene as a mouth jel and spray, and lacrilube and systane ultra for eyes, the eyes have been identified as meibomian gland dysfunction (MGD) but and its a big but, this was before the fibro dx and well before the lupus dx, there are other sjogrens symptoms as well but at the moment I'm on some pretty extreme treatment for a lung condition and they really want to park everything else for about six months and just keep everything as comfortable as possible. The bladder stuff is more of a problem tho, I have to drink around two litres of fluids daily in addition to the usual tea and coffee so trips to the loo are very frequent! I'm definitely going to raise this with the team tho, so thank u for telling me about it x
Are you on Amitryptalene as this can cause a dry mouth?
No its another one I can't tolerate.
You sound like me Ccupcakes:). Nice tip about Zaicin cream and Burtrans patches. Can I ask are you in the UK? If so, does your doctor prescribe them? 
Yes am in uk, in Kent, and yes my GP does prescribe both, initially we talked about fentanyl patches but she said Butrans would be better for me in view of other stuff, she was quite pleased that I asked about the Zaicin, said it was good that i was actively engaging with my Fibro ! I like my GP.
Hi with pads for old people your wrong there for anyone that needs them/help as if your wearing glasses do you say for old people or hearing aids/walking sticks/crutches/wheelchair/false teeth/wig/and so many other things? No there all aids to let you live by.
Even giving you some freedom to get around!
you could/can be any age and need any or all of the above!
Diseases/illnesses/disabilities know no age or boundary.
But many use pads or something as like you had that issue like many have some never ask/mention but the bladder is a muscle in same way as all the others effected by Fibro plus it is at the end of the line so anything upstream gets to it.
mine has been going on years yet it is only in the last few years since seen the head lady at clinic that said ha if you have Fibro you will have issues ive quite a few Fibro snuffer's in my clinic yet been to know it all quacks/medics at hospitals that talked crap!
As a guy all they could squawk about was prostate like it was be all and end all of the world yet it's all connected to the spine by nerves which then connects to the brain so anything in between will cause issues! like PNE/Disc damage or things like FibroMS and a host of other things even Raynauds as get a cold/chill.
Ive spine damage as well in lower back and neck with nerve root compression and ive had it so bad that it will effect bowels if trying to hold and empty whole stomach over course of an afternoon once so it isn't something to ignore.
But don't cut out fluids as another thing they found with me is don't empty fully also.
Just use whatever your comfortable with plus you might be surprised how many ladies wear for one reason or the other!
So your sure not the first or the last so don't worry.
I had some made for me for night time use as don't/can't get on with disposables as they irritate as draw on skin plus bad for planet.
I front/side sleep plus fight with the bed so they leak if do plus we often go at once not in dribbles and they can't handle that.
but the beauty of using them is providing have enough padding that drink plenty before bed then next day feel more refreshed as you flush much out as the body does it's own thing while you sleep so cleanses taking toxins and others things out while when about would just quickly get fluid through you.
cathy1110• in reply to
Sorry to hear you have all that to cope with and thankyou
• in reply to
I so agree with what you've said there. I've used panty liners all of my adult life for hygiene reasons but now I have a sensitive bladder I need to use them.....x
Sorry oscarbravo was being facetious about the pads, nice to hear a man's perspective tho so thank you for being so honest, it's a difficult subject and a very intimate one isn't it?
• in reply toCcupcakes
Hi well it's just another thing to add to things!
Most places you go to look elsewhere instead of whats under there nose's as it's a well known fact about Fibro etc and IBS issue's they should if "are" specialist's "know" there trade!
Imagine calling the fire brigade out me house is on fire they turn up and say no think it could be the heating is too high? or a plumber house is full of water as pipes burst ok il put a new plug in sink.
Mechanic cars grinding as wheels broke off. il look at mirror as loose.
If your a woman they scream stress inco mind do with men also but we don't get it as such as our bladder isn't subjected to same stress as another layer below it etc(Came from decent inco person) but fibro and many other things cause it but they skirt around the issue going round and round costing lot's time&money yet achieving little where as if they actually looked/listened&learned you'd be sorted and on your way they'd have learned something&next person dealt with!
Many of the meds they like to shoove down your gullet don't really help apart from there cash/kick back from med co as cause many side effects some long term also by way of how they actually work!
For some you can retrain the bladder as some clinics will show/teach you but won't work for all.
Cutting things out you ingest can also help there is a list which is quite extensive see what ones effect you.
Ive also used an indwelling catheter but always with a valve so have control when to empty so not on constant drain which is bad! for when it was bad like in really cold weather it was great as had peace of mind that should i need to go i could so could get out/go places as i used the Rusch bellybag sits round middle bladder height so bladder works more normal when emptying unlike a leg bag which causes issues inside as siphons bladder wall just like if you put your hand over plug whole when bath is emptying out pulls hand into hole so imagine what it does to your bladder!
Learnt how best to use/go about it had one infection which most do in first week after that no problems.
so there are many things you can do as for me there all tools pick which work best for you.
• in reply toCcupcakes
Hi yes it is but once in a like faced group not so much as it's only discussing subjects like this that further it on but it is being a bit more openly discussed these day's like many things as you even have one's on TV bringing it up even with there briefs for woman.
But if you hide it away it can have far more health damaging effects than bad eyesight/hearing/knees/hips/and a whole range of things that we moan ho me eyes are poop yet to have Kidney issues is going to cause far more than a wet patch one being eye sight for one!
Ccupcakes• in reply to
I agree, and I think thats where forums like this come into their own, you CAN discuss this sort of issue without fear of embarrassment or that the subject will be diverted away to something less intimate, mind you , I think your bladder issue is vastly more advanced than mine, for me its irritating and a bit painful sometimes, and one of the other treatments I'm undergoing can cause the bladder walls to bleed and rupture, but I'm not at the stage of needing a catheter, and I hope it doesn't go that far. I'm going to talk to the team that look after me tho, especially after reading your post, better be safe than sorry as you say!
You are so right cCupcakes, these forums are so important allowing us all to ask questions which we may even feel embarrassed about raising with a doctor. It's nice to know we're not alone, knowing others have similar symptoms,although we would not wish them on anyone, is in someway comforting.
I hope that your treatments are helping you and don't lead you down the catheter road. I know how painful that can be. Xx
• in reply tocarol789
Hi it isn't that painful if done properly and looked after plus BIG peace of mind that you have some control back far out weighs much else but it's just one of those things you need to learn about if going that route like many things driving a car will be very painful if don't learn to do properly!
I frequent the loo a lot.
Hi I to have fibro for now 21 years. My bladder was one of my first signs of this horrible condition. My neurologist said I have Interstitial Cystitis . its very painful. I'm in remission now praise the Lord !! But I fall out about once a year.
I have to stay away from all citrus, and I try to drink a lot of water.
Blessings
It is awful and thankyou
Hi Angiegirl45, why citrus if you don't mind me asking?
Amen Praise Him
Hi I have been refered to see a specialist next month as I have the urgency to wee all the time think they say its stress incontinence as I live in violent pain every day, probably going to find out its connected to the good old fibro . Take care joanne x
Hi Cathy110, yes definitely have this 
very embarrassing when out as if I got to go then I got to go! I do have pads for going out (also embarrassing as not old and hoped I would not be using them until then :(.
Same with skin also, I've been ready to go out and had to get changed again as cannot handle the pressure of clothes, even bedding - weird or what! Other half just does not get it, in fact, he goes out of his way to nudge me every now and then as he dies not believe me.
My hands are either freezing or boiling, so at home, have ice packs handy and hot water bottle. I have often have to finish off shopping by holding frozen veg in my hands, I honestly can't describe how hot they can get. My feet on the other hand are always cold and very hard to get warm.
I wouldn't wish this on anyone, but, is comforting for me knowing others with Fibro have this and its not in my mind.
Magnesium oil rubbed in skin does help me somewhat and magnesium salt baths.
Take care, hope it settles down for you soon :)
Carol x
Hahaha, I've just reordered a mag spray about ten minutes ago! Silly question but you have been checked for Renauds with your hands n feet?
Hi Ccupcakes . No not checked for Reynolds, to be honest, my doctor doesn't like referring on for tests, every time I mention anything he advises its down to Fibro. I am waiting to see Rheumi so will be mentioning it to him, I now have a list.
Glad you ordered the mag spray, it may help you,I'm sure it helps me.
Thanks for raising the post, really interesting and nice to see we're not on our own.
Hi carol I really understand what it's like to be disbelieved.
My husband thinks I'm lazy cos I'm trying to sleep most of the time and then when I'm awake I'm still really exhausted. He always says 'still' when I say I'm tired . I'm fed up repeating over and over the symptoms of this weird illness . My whole back is touch sensitive with the bottom part totally chronic with pain. He still pats myou back when he hugs me . I don't think he will ever understand or even just sympathise a tiny bit . He thinks I make excuses why I can't do stuff .
We could swap feet - mine are always roasting hot !
I sorry your having to go though this with your partner they just dont understand may be you could google some things on fibo for him to read its hard enough going though this and your partner not belive in you . My heart goes out to youxx
He believes that I have it just doesn't get how totally overwhelming it is.
It's because he can't see it in think . It's like that a lot with invisible illnesses.
Bless u
It is so hard that others x family menbers dont understand. Thankgod for these sites ..hope things do get better x more understanding comes your way .my heart goes out to youxx
Hi Biffbrain , I think they must be related somewhere down the gene pool ! I've made my husband read info. He even - a couple of weeks later, when he was on Twitter, said to me, "gosh you know that fibromyalgia thingy you've got, it's really painful" that was a few months ago, so we're back to square one now. Hopefully someone else will mention it to him as he takes no notice of what I say about it. Then he's got to retain the Info! Never mind eh!
Hope you have had appears as in free day today. X
That does sound a lot like my husband too. Today's been extra painful cos I had a long day yesterday with one thing and another . The more I do the worse I feel .I'm sure it's the same for you. Thanks for the reply . Sorry if I wasn't meant to- it did make me smile !
It definitely helps to know I'm not the only one going through this weird illness . Bless u
I went to doctors with this and was referred to incontinence team they were a great help I got medication that has eased it somewhat it takes the urgency away but still have some problems but missed appointments so had to be referred id speak to GP
Ccupcakes• in reply to
Hi Slacklesley, how are you doing? Are you enjoying being our admin?
Ccupcakes• in reply to
What med were you given ?
Regurin got it from bladder nurse x
Hi cathy1110 , burning of the skin ( with no colour change noted) I get this regularly and I also get hand burning (with redness of my palms)....truly pants xx wishing you well xx
yes i need to get up to the loo at night often and need little and often during the day its apain
I other way i dink loads during day and i harly go
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