Still struggling

Here I am 8 months on and no one can give me a clear diagnosis, unlike others my pain didn't. Start from any sort of injury. It began last September in my hip a sharp nagging pain that was excruciating when trying to stand from a sitting position, at the time I was working full time as a qualified life, I was independent, I could drive and spend time with my children when ever I wanted, work permitting!!! . The pain gradually moved to the other hip, Lower back and my legs . Long story short I still have no diagnosis I have chronic pain 24 hrs a day I can't walk and am double incontinant. I'm drugged up to my eye balls most of the time. I have lost everything !! Nobody can see the pain I had an urgent referral from GP in January and still waiting ... this is just a small part of my life and it is how I have introduced myself because this is now who I am. Although horrific for everybody on this site for me it's nice to hear I'm not alone, it's sad to hear all your story's here but together we can support and learn from each other. I'm glad I found you all xx

28 Replies

  • Hi Katie. I feel for you as I am in the very same boat. Told it was sciatica and bedridden for a month.Then an xray that showed that vertebrae was out of line etc ! Dr said urgent referral .MRI etc..2months ago.. still another month to go before I see him let alone the MRI! ..agony..meds do not do their job. I walk (hobble) with a stick but cannot trust my leg as it gives way every chance it gets. The pain is easier when I lay down. I think maybe both you and I should go back to our Drs and make a fuss, but I guess you and I are worn out with it all. I do hope you get some help etc soon. Do keep in touch. I hope you get help really soon. All the best. Carole x

  • I'm flabbergasted that you're still waiting to see someone - double incontinence plus the other symptoms and pain sounds like something that should be investigated as quickly as possible.

    Does your GP fully understand the impact on your life?

  • Hi Katie, please please please get to A + E with those symptoms, you need assistance sooner rather than later, bugger the referral process, you will get to see a speciality asap as you need it. Do not wait. It is important to sort this out asap.


  • I don't normally advocate to those on a site to go to A+E but you need medical assistance. SA

  • I agree with the above. Following my own back problems I was repeatedly told (by a surgeon) that if I developed bladder / bowel problems, or numbness / tingling in the 'saddle' area to go straight to A&E.

    You really shouldn't have to wait this long and your GP should know this.

  • hi 9711katie,I'm sorry to hear of your numerous health issues that started off as a small compliant but has really gone into overdrive recently,sometimes people /family don't understand pain,or don't want to hear about and also being double incontinent can be a big problem in itself,I admire your willingness to mention this fact,as sometimes any illness can cause bladder /bowel problems and this is not often mentioned,so as humans toilet habits aren't really discussed much,but it's probably the most things we have to do on a daily basis,and people like yourself are needed to keep this discussion open and frank,so whilst I can't help you with your pain issues I really hope you can get all the help required to put your life on a more even keel,and get back to some sort of normality,god bless to you

  • Hi, all I am repeatedly going to my gp as due to the pain etc, my MRI shows problems with the L1and L2 but because all my pain is from my hips and lower they are saying this is not the problem , or shall I say the cause of pain in the hips. My doctor is fully aware of my life situation as he phones me near every other day he has put in a urgant referral but because of the cut backs there is nothing he can do, he has referred me to incontinance nurse and is trying to combat some of the pain.

    I lost the plot last month due to pain my hubby took me to A and E and the I got to see a neuro surgeon who said it could be something to do with the horses tail !! A bunch of nerves but there was nothing they could do as they only had a small pocket of money and sent me home with more pain medication and a letter telling me that I needed a referral to a neuro surgeon . It was a complete joke I even left the hospital with a cannula in my arm, which I had to take out myself.

    The NHS is a joke and to say that I am a nurse makes me saddened. I no longer work as I pritty much am led on my back most of the time or in a wheel chair but the pain is as much sat as it is stood. I have 4 children and I have to say they are the only thing that are keeping me here ( doctor knows) I don't know how to continue as my every day consists of trying to keep the pain at some ease. And tying to empty my bowels manually and try and urinate, I know it's a bit too much detail but I just dribble urine through out the day sometimes not at all but there is nothing I can do physically to make my self urinate, I either do or don't . I have read that all above is an medical emergency but what am I do ?? I have constant urine infections and have kidney stones,,!!

    I am currently taking 60 mg twice a day oxicodine 200mg 3x a day of lyrica, oxinorm as and when needed. Diazapam for the cramps and spasms along side baclefen 3 x daily and zopliclone for sleep. I have just recently been put on a constant prescription of antibiotic to stop urine infections too . I am a zombie most of the time.

    My GP is amazing and seems to be doing as much as he can but its the referrals that's a joke, I'm phoning myself everyday to see if they have a. Cancellation .

    Anybody else been in this situation and does anybody recommend anything else for the pain.

    Thankyou all for listirning to me moan and groan

  • I am horrified that even the neurologist mentioned Cauda Equina, (my first thought when I read your post) and yet you are waiting and waiting for some proper treatment. I know when seeing me about my condition/symptoms the professionals have often been concerned that I wasn't experiencing incontinence and other symptoms of CA. I understand the frustration and exhaustion of even the thought of going to A and E but I wonder if perhaps you should be presented there again. I'm not a medical professional but sometimes my experience of the NHS is that if you are suffering as you undoubtedly are you need to keep on. As kind as any of them are, you are experiencing the symptoms and pain and they aren't. Thinking of you and hoping and praying that you get some proper help soon.

  • Hi, i know exactly where your coming from but the thought of being sat in the a and e for hours on end just to get sent home again is just an horrific thought, I know I need treatment urgently and so does my gp but I have 4 young children and don't have the child care needed. I'm so frustrated and I'm sure the stress is making my pain worse . It's just knowing what to do for the best x

  • sorry if my reply made you even more frustrated. I don't have children but I do understand how much harder that makes your situation. I know how excruciating pain can be - hard to imagine prior to experiencing it. I was formerly a primary school teacher until 2010 when I developed sepsis due to an abscess in my lower spine. I had experienced severe pain before then, in the 90's, when I badly fractured my rt shoulder causing loss of use. Surgery in 2010 caused nerve damage and paralysis in my lft leg. I am on Buprenorphine opiate patches. I had to leave my teaching job at the then age of 54. They were originally prescribed for my shoulder but in the years since then the dose has had to be increased. As you are experiencing, all medications (I believe) have their side effects. I wonder if there is a pain clinic in a hospital near you? Pain is invisible to others but there are professionals who have a better understanding of how it makes lives very difficult.

    No you aren't alone - it is good that you have found this site, it is good also to be in touch with others who understand and hope that you get some proper help soon.

  • No, no worrys :) I can't be any more frustrated then I allready am, I've just today got an appointment for s pain clinic on the 6th may.. not sure what they do ?? But hopefully will provide me with some hope x thanks for your support and the rest of this group

    Thankyou all

  • hi,im so sorry to hear this.iv been on practically all the pain meds you mentioned and had the same issues.iv never got a proper diagnosis either tho they found a break in L1 after I begged them for a Ct scan.iv had to fight for everything on the NHS,used everything iv got to go to private appointments when I could,it is a joke.iv been near ending it all and ended up in psychiatric hospital with the pain 2 years waiting for appointment in July and like you,ringing everyday to check for afraid I can only sympathize as Lorazapam is the only other med iv been on different to girls and small granddaughters are the only thing keeping me here too.i hope so much that you get answers fast and at least take comfort in knowing folks care.brightest blessings,Sharon.xx

  • It's so nice to have someone reply today, cyrstalship ,, last night and today has got to be one of my worst nights , I write now in tears as I don't know we're tompiy myself. It appears that lying down on my side no longer Hwlps wirt the pai, in fact it feels like it's making it worse... nothing matters when pain is this great all I seem to do is keep swigging the oxynorm witch has no effect, I need to become mentally stronger or I'm I am going to loose the plot.. oh god if I had a saw right now I would be cutting my left leg off not good times :(

  • im so sorry to hear that you're struggling.just a thought but have you been put on any antidepressants? I ask because these helped me cope (slightly!) but it made some difference.just trying to make it even a little better.x

  • I have been prescribed some but not started them as they are addictive like the rest of the medication and I'm worried about how im hoikhb to get of them all cv

  • I used to think like that,but I'm really stubborn .☺ id honestly give them a try.i wouldn't at was only when I came out of the hospital that I was given them yet again and couldn't cope so gave them a go.they have taken the edge off the anxiety.(thought I was going nuts,vile) certainly have helped.xx

  • Just an FYI I too take Baclafen during the day but at night or when I'm having a really bad pain day I take Tizanidine also known as Zanaflex in the US. It will make you very sleepy but it does such a go job.

  • Welcome 9711katie.its very difficult when our lives change so much through illness. Their are many of us that this has happened to and excepting it is the hardest part . X

  • Hi Katie, your story is very familiar from fit and healthy to disabled almost overnight. I had an Hysterectomy and ended up in constant joint pain in my thirties. Fortunately with GP help I was able to go back to work but not on a regular basis so eventually I was employed as a disabled person and retired off at 55. I do have other chronic illness and systemic arthritis. But at least on here we can recount our stories and be hopeful as we are not alone , enjoy your day xx

  • Thankyou for your reply, at least there is hope I hate being bored and stuck between 4 walls, literally like you say, I was working 40 odd hours a week and now nothing, this causes me pain In itself, I'm an out going person but with hope and encouragement I will get there no matter how long it takes !! I wish you well too x

  • Hi Katie, I have very similar problems in that area and like you when on my back I can feel a bit better it's called the Cauda root (the tail) and I suggest that when lieing on your back you do regular breathing deep in and out using your stomach muscles to gently push down and over time you will notice a difference for there are many different muscles in that area and it is important you get in touch with them slowly, while breathing your chest in and out expanding it as you get into a rhythm you will begin to notice your back and spine relaxing which allows you to get in touch with the area that is causing the pain, (but I'm no physio) but we are all different with different pressures so it is really important that you get in touch with your own body because in the end it's your body, doctors are like mechanics good, bad, expensive, and cheap so don't believe the first doctor and get a different opinion as to what you can do to ease the pain and distress that this problem brings all the best Alex

  • Respect for sharing your distress. I really hope you get some answers and very soon. As others have said don't give up. Going through pain issues but not incontinent. I have always been told if that happened I would be treated immediately. I am lucky with my GP practice, however I would not hesitate to make appointments with different GP's until I am satisfied with the care and support we all deserve, and more importantly a referral to a competent consultant. Best wishes

  • Katie there are so many comments already I really didn't want to wade through the all to see if this is been already discussed. I don't know how old you are but I have an idea of what your disease could be but it depends on your age. Because the disease I think it is is really only considered an old persons disease. LOL Although it is uncommon it can hit in their thirties. But typically it is normal to hit them until they're in their fifties or older. The disease is called poly Malaysia rheumatica. and it causes pain in the hip and the shoulders it can cause pain in the legs and the back. The key to it is that it's bilateral meaning It's gotta be on both sides which is what you have now. And i want to say that this disease is that the pain is not controllable on pain meds which is something you're describing.

    There is two ways to diagnose this disease that your doctor can do. The first way is to do a blood test that will check for two inflammation markers one is a CRP and the other is a sed rate. If these two inflammation markers are raised then that's a good indicator that you have the disease. However some people can have the disease even without these inflammation markers being raised. So the best indicator that you have it is to put you on a Prednisone pack of 15 mg to 20 mg which is the treatment for the disease and if the prednisone stops the pain within a couple of weeks then you have confirmation of the disease. And with most people the pain will stop within a few hours of taking the first dose of prednisone. So having said all this if you fit the age criteria then I suggest you talk to your doctor about this immediately.

  • Thankyou I will certainly talk to my doctor I'm 36 years old, I will google the disorder now, thankyou

  • Hi katie - just reading through the replies here and saw this. I think there was an autocorrect problem there - the condition is polymyalgia rheumatica. It used to be though of as an "old person's disease" but it isn't - people in their 30s and 40s can get it too.

    I'm no doctor but I have been investigated for PMR and it doesn't sound like that you have to me. It sounds horrendous that you have all this and aren't being properly investigated. I do hope you and your doctor can sort something soon.

  • Thanks for the info, I'm nearly convinced this is what I have but my gp has been very dismissive, so for me it's back to the drawing board. Although I'm now waiting for a urgent referral to a neurologist. Fingers crossed. I have so much respect for everyone on this site, having the energy to keep yourselves well and helping others- thank you

  • Sorry all for being so quiet, since posting my pain has become chronic with severe pain down both my legs, (not at the same time) my doctor sent me to the pain clinic which was the worst experience of my life !!!! A consultant in pain apparently !. I was wheeled in, no eye contact, said she didn't have any notes but could I explain what had been happening and then diagnosed that it is all in my head and that my doctor is going to kill me with the meds he's prescribed, I left in a state but upon leaving a staff nurse slipped s complaint slip down my back in the wheel chair. Since then I have been very paranoid, not left the house and was just left feeling on my own and scared of taking the meds prescribed. Stupidly I did suddenly reduce my oyicodone which was silly. It's taken a good three weeks to become mentally strong enough to start fighting back. Anyway good news I decided to go private and as I result spoke with a consultant last Friday and she was shocked that I had been left as long as I have, she has agreed to see me back on the NHS and as a result had an urgent MRI scan on Wednesday, of which she is seeing me with the results next Thursday, I just hope and pray that I get some answers, I am drained and had enough. As it stands I'm still incontinant and the pain at time is as bad or even worse than child birth xx :(

  • Hope you get some answers soon. Let us know how you get on xx

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