Nice to meet you all

Hello

I've just arrived and I'm a bit late at 12:20am but I can't sleep because of the pain I'm in.

I had a Caudal Epidural two weeks ago and for the first week it was going well. Then not so well and my symptoms have returned with a vengeance. I'm now worse than I was before. I also have fibromyalgia which will amplify the nerve pain.

I take pregabalin, co-codamol, naproxen, tramadol and now morphine. My gp says he has done all that they can do as my point of Primary Care, it is in the hands of my Consultant now. My consultant's secretary says that I should go to my gp!!! Help! (Sorrry for the long post). Take care

[Della30]

Are you taking all these pain meds concurrently? Ask your GP to refer you to a specialist pain clinic - your medication needs to be reviewed.

[Hidden in reply to Della30]

Yes thank you my meds are regularly reviewed by the pain clinic, gp & OT.

[mikejames]

Hello Fedupandfearul,

Really sorry that your going through all this, I am an cauda equine sufferer and taking similer meds as yourself, I"ve not had an epidural yet (still waiting) You said it was working ok for a week, so why are they not able to give you another epidural with (hopefully) longer lasting pain relief. ..Best wishes mikejames

[Hidden in reply to mikejames]

Thanks for your message. The Epidural is a steroid one so they will only do it every few months.

I hope something is done for you soon.

[Hidden]

Dear Fedupandfearful. I'm so sorry that you are in so much pain and that the epidural stopped working. Do you have another appointment with your consultant soon? If not, try and get to speak to the consultant on the phone. It is possible. Make sure the Secretary knows how much you are suffering and that you're desperate for help. I'm not sure if your GP could be a little bit more proactive. But, of course, I don't know the circumstances. Whatever happens, you need support with the pain. I hope it all improves for you. Please keep us up to date. I'll put my thinking cap on and see if there's any thing else you could do.

[Hidden in reply to Hidden]

Thank you very much

[Christy_R]

I had three of the epidural injections and they didn't help me either...just made the pain worse but they didn't give me anything after they just told me to go home and live with the problem. Sorry to not have better information than this but I do understand what you're going through. Thinking of you! Christy

[Foxgal17]

Welcome to my world in Massachusetts, USA. Lots of shots and very little relief. It's a scam. The doctors don't care. All the fantastic education these docs have and no one will help us. Thank you opioid addicts, very little, for taking our pain relief away from us.

[coolpolitealex]

I think the perceived wisdom is that if you have a spinal problem then putting needless needles into your back and spine only adds to the pain problem in fact (if I read it correct) no decent Doctor today advises creating more scar tissue into areas that are already damaged.

I have lived with cauda aquina for many years and keeping your muscles (I find) in good working order is the one thing that helps me the most, and of course relaxing and breathing deeply in and out alongside the minimum pain meds, because pain is the best teacher and if you take it all away then you won't know or find out where and what movements cause it to get worse.

But we are all different and find our own ways to manage, so there is the crutch of the problem "Management", managing your own body is something "Chronic Pain" sufferers must come to terms with because moaning about it to people who can not possibly understand, or get fed up hearing it from you (because they can not help really) especially the Consultant's and Physios who can only do a certain amount for you, the rest is with you and the effort you make mentally and physically in adapting to this disability, that is blind to all but ourselves.

But the trouble is if you manage it too well, then you leave yourself open to the' Oh you can't be that bad, or that your effort in managing is seen as something else, by those very people you rely on to supposedly help and understand , and if they don't, then what do the general population think.

But the hell with them because unnecessary worrying only tenses you up and put's stress on your body which causes tension in your muscles which causes you more pain, So antagonising the Consultant's and doctors is problematic, because then you leave yourself open to be seen as, not as someone in pain, but a pain in the arse to them, so tread likely, because if they are good doctors then they will have your best interest's in mind when prescribing and diagnosing. All that is common sense really, it's only getting yourself into a place where it will sink in enough so that you can get on with managing it, sorry if it was overly long, but it was my journey, so I hope it can help you (Fedupandfearful ) All the best Alex

[Hidden in reply to coolpolitealex]

Alex thank you for taking time to reply. I understand the balance we have to achieve is a difficult and ever shifting one. It is certainly a process of finding out who your true friends are.

Is there no cure for your EC?

[RAYJAYC in reply to coolpolitealex]

Hi coolpolitealex

I have Cauda Equina episodes several times a year but the bladder incontinence, unfortunately remains. Can I ask you how you manage your incontinence? (I hope it's not too personal a question!) I have conversed with a couple of people on here with bladder incontinence (from CE and other issues) and have had different management techniques mentioned; both from the person's and their consultant's perspectives.

I'm currently being offered Botox into my bladder which will mean I have to self catheterise but I'm really not sure how I feel about it (yes I know, which would I prefer, incontinence or carrying/using a small piece of equipment?) but it's a hard one for me!!!

RJC

[coolpolitealex in reply to RAYJAYC]

Well lucky for me I do not have incontinence or any real serious bladder problems (I do have problems in both areas) I am able to keep my muscles in working order in that area but the problems do occur but luckily as yet no major ones, but it is a full time job, because exercising lying on the floor helps it's just the bloody pain and uncomfortableness in sitting but I do my exercises and they help me sit still for longer periods.

I am so sorry to hear of your problems how long has it been this bad for you or has it gotten worse over time.