where do I start

I don't know anyone who has Fibro near me.

I find it hard at times to explain myself to ppl and sometimes get rather pickled of.

I got injured at work on handover and since then my pain has progressed from my shoulder/neck to my hole body and I 'm getting weaker and suffering with burning pain as I try to walk plus all the other things that go wrong. I have a choice the only one with this condition is to have a catheter inserted or stay with big pads and wet myself.

Is anyone out there as bad as me ......... It has taken a lot of courage to join ty if you read this......

16 Replies

  • Hi there cowchangsox, and welcome to our friendly forum 😀😀

    I can hear the pain in your post, and you have certainly my full understanding and empathy in that pain, I'm sure many here will join me in this too.

    I don't however have any experience with your other experience but feel it must be such a hard thing to have to cope with.

    I think perhaps another visit to your GP t o explain your desperation might be a very good idea because new procedures are being found.

    Sending you lots of positive healing vibes 😀

    Foggy x

  • Welcome to the forum I feel sure you will find it friendly and helpful. From reading your post I get the feeling you are not receiving all the medical support that you should have. I am not medically trained and speak only from my own experience, is it possible you have nerve damage, from posts I have read we are not alone with incontinence issues. I think you should discuss all your needs with your GP and work out a proper plan of treatment. Lou x

  • Wellcome along cowchangesox,

    I certainly can relate to the finding it hard to explain myself, I just seem to loose the train of thought and all is lost.

    My pain started also in Shoulder Neck and down the arm , that was many years ago and like you I suffer all over now, the exhaustion for me I often hate more than the pain but both are so difficult to deal with on an ongoing basis.

    IBS seems to be a more common with fibro than bladder problems but I have had something going on with both bladder and bowel in the last few months.

    I went off all wheat, dairy, soy and fried foods including potato crisps and while things have settled a good bit things are still not great.

    At least I am not as irritated inside at present.

    My mind can be so all over the place I start writing notes a few days before I visit the Dr and at least then I have a bit of direction, a map of sorts for while I am there and the visit is then not a total waste of time, infact I now make notes for most things that involve interaction with anyone as I would get nothing done without them.

    I think we all may be able to relate to standing in a supermarket looking lost and not having a clue what we are there to get.

    I hope my experience may be of some use!

    Best Wishes, Ray

  • Welcome to the forum and it is wonderful to make your acquaintance. I have read your post with so much pain and sorrow for what you are having to endure and the choices that you have been given.

    I have a bladder issue due to my sciatic nerve compression but it is no way on a par yours. I was wondering if you had been offered exercises that may help alleviate the issue? I see a Urologist and he offered me a medication called ''Oxybutanin'' that helps stop me from going to the loo too often. Is this something that you could discuss with your doctor or is your problem too far gone for medication?

    I genuinely wish there were more that I could afford to you that may help with this issue, but I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • I wish I new more about your problems. I do have ibs but I also have nerve damage. I also have degenerative disc disease along with fibro and other issues. I do agree with Lou I don't think you are getting the care you need. I would ask to see a specialist. Hugs

  • Yea I'm as bad as you So you got to get the right medication Quick as you can I have Tinnatas too so life can be hell , but we all fight on the best we can .

  • Well hello, you are more than welcome to this wonderful site, it is a very supportive site and people are very understanding,helpful, kind and very generous in spirit, you can moan, rant and throw a complete wobblie on this site and everybody understands we all get the same we will all try to help you understand and try our best to advise and keep your spirits up, so what ever time you post their will be someone to try and help you or we are here just to listen and empathise with you. Some of our fibros also post very funny pictures which sometimes make you laugh out loud which is a tonic in itself . So you are most welcome, best wishes.

  • Hi cowchangesox,

    A very warm welcome to this fabulous forum, it is as previously stated a very supportive, understanding group of fellow sufferers, you are not alone.with regards to your bladder issue I see Ken mentioned a medication that may help another suggestion for you to consider is you might have an overactive bladder, I know of two people with this they don't have our fibro or other conditions we suffer from, but the bladder issue is so sole destroying & life limiting because they are constantly on the lookout for a toilet, they both get botox injections into the bladder which cuts down the urgency need they feel almost all the time, perhaps that is something you can suggest to your GP when mentioning the medication Ken recommend. Wishing you the very best, love & hugs to comfort you xx

  • Welcome ,I have found this site very warm and welcoming since I joined.I suffer with the front incontinence but that's normally when my bowels are blocked,I have bowel adhesions and IBS so I need to follow a low fibre diet .Since seeing a dietician my incontinence has almost stopped.Please go back to your Gp ,ask for a referral to Rheumatology pain clinic,there is help out there but you have to keep telling Gp how bad you really feel.I find writing a list of how you feel on a daily basis and present it to them.Wishing you Lots of luck.xx

  • Hi there.

    Like other on here I think, whenever I get a new symptom I tend to put it down to fibro. I have a bladder problem plus bowels. I had examination and requested a lady doctor, its not nice. Anyway I was told I had a prolapsed womb, but me being awkward mine is the other way round so it effects bladder and bowels. She showed me a diagram of my womb and what was going on. this was very helpful. The Doctor explained about pelvic excersice and it does work sometimes. If it gets un manageable she explained that a stitch could be put in.

    I realy do know how embarrassing it can be, one night I was out with my hubby sat on someone elses chair and I was laughing and I literally emptied my bladder.

    so hold on in there and do seek medical advice, it could be a number of things, get a second opinion, its your choice and right.


  • Welcome to the forum, you will find lots of help on here and make lots of new friends I'm sure, we are all suffering in different ways but try to support each other as best we can, are you on any. medication ?

  • Hi and welcome‼

    Regarding your pain and incontinence issues.

    I agree a rheumatologist/pain management could be the best way forward .

    The urologist is a another point to peruse.If you are near a specialist Women's hospital get referred to that urology as they have,in my experience, the best of the best available to you.

    Catheter or pads? It is a personal choice but with tubes you can get loads more infections and certain clothes will show the bag more?I have done both ideas over the years.

    I actually take begimiron but have had patches before now.

    The specialist has done lots for me so I can be positive about going out and even travel quite long distances without constantly looking for a toilet!

  • I can sympathise with you as I have the same urological problem and saw the consultant last week. I have already had a bladder/bowel repair and she diagnosed an over active bladder and has put me on medication to be reviewed in 3 months time. I don't know whether it is caused by my slipped discs or not. I suppose she will be able to tell me more after medication. It is all very embarrassing!

  • I am sorry that you are in so much pain but I do hear you and understand I have SLE Lupus and Fibroymyalgia and other medical problems and everyday I am in pain with my neck, joints and muscles. I am going to start Homeopathic again next month I am hoping that will decrease my pain. I am using Deep Relief Pain Relief Gel Ibuprofen + Levomenthol and it is absolutely brilliant I use it three times a day and believe me it really works for pain. You can get this from your doctor on prescription so I would try this and Solpadol which is also on prescription and to me is better than codamol and penillicin, aspirin and all the others which is like taking skittles. Anyway good luck and I wish you all the best and hope things get better for you soon take care :)

  • Hello and welcome to this wonderful forum. I'm sure you will find it helpful in many ways esp. When you need advice just just a shoulder to cry on.

    If you tap on Communities, you will be able to find other sufferers who live close to where you are. Take care and hugs galore xxxx😀

  • ahhh you poor girl. I am a carer and deal with lots of incontinence and its dreadful for people,if it was me I would have a catheter as they stop all the accidents and also you don't have to worry about any smells .the only draw back is the possibility of uti s xxxx I also have that dreadful burning pain xxxx

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