Feeling lost

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I'll try and not have this go on and on forever for the sake of anyone reading. 

I'm feeling very stuck and think that maybe an outsiders perspective would help right now. So I'll just tell the full thing and hopefully it makes sense.

Around 6 or so years ago the skin on my upper left thigh went numb, I assumed I had slept funny or whatever. Over the weeks it began to burn and any clothing touching it was very painful. Eventually I had shooting nerve pain in the thigh whenever I was upright/walking and this has worsened steadily over the past 6 years and is giving no signs of slowing down. I have seen several doctors, was tested for athritis, sciatica etc. X-Rays, MRI's all showed nothing. I was put on numerous pain medications, physiotherapy and medication targeted directly at nerve pain/issues, all with no results. 

The gradual loss of my mobility because of the pain has led to me now being agoraphobic for the past 2 years or so and have not left the house. GP's aren't helping and I have no idea what to do and what to start with as it's a pretty vicious cycle. 

Anyway I've rambled, unsure what I'm even asking if i'm honest, but it helps to just get it out of my system. Sorry for any spelling mistakes etc. 

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8 Replies

  • Posted

    Six years with no answers is a long time.  Have you seen a Neuroligist?  If not, I suggest you see one and get nerve testing done and a test/biopsy for Small Fiber Neuropathy if that has not been done.  I just had one done, 3 punch biopsies, which could orobably be done locally but I think there are actually only about 12 labs in the Country that processes them.  Might be something to consider.  Have you had spinal X-rays/MRI done?
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    • Posted

      Thanks for your reply.

      Have never been referred to a Neurologist, and all of the GP's I've dealt with just shot me down when I suggested anything which was very frustrating. The X-Ray was on my hips as at first they suspected athritis, although i'm unsure what made them think that. The MRI was of my spine but I wasn't shown it and when I asked about my results I was told they couldn't see anything and they wouldn't operate on someone of my age, i was 18/19 at the time. 

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    • Posted

       Hi Margot

      I have recently had a nerve conduction test which 'hinted' at

      small fibre neuropathy. The hospital unfortunately does not

      have the facility for skin punch biopsy at present-funding

      issues like most NHS hospitals. Are you in the UK and

      if so can I ask where you had it done? Regards.

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  • Posted

    Hi Vault Dweller, I completely understand what you are going through. When I went off to a military college a few years ago, I suddenly appeared with swelling and sharp pain that goes straight down the back of both thighs. I came home within two weeks of having left home and was on bed rest for months. It is now three years later and I have progressed only worse now having pain in most major areas and limbs of my body. It cost me my potential future. It makes it difficult to even go to school and work on a daily basis. I have seen over 10 different doctors from GPs to neurology, rheumatology, etc. I have been tested for a lot of major things and I have since been told multiple times that they may never know what causes it or why I am in constant pain. I understand what you are going through and how lost you may be feeling. I feel it too and I feel extremely limited due to my young age as well. I know it is difficult and frustrating. Everyone just keeps telling me to keep pushing but I really just want to give up. The doctors won't even put me on anything to help manage the pain in any way. I completely understand and to this day I remain undiagnosed and untreated. Only now after I have taken action up to the corporate level of my Healthcare are they now taking me seriously and putting pressure on the neurologists to find something. Keep trying. Push if you think you can. It's hard and it gives me lots of anxiety and takes me away from school and work constantly to deal with it but if you have or think you might have the strength to fight, please do.

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    • Posted

      Hi Rebecca, thanks for the reply.

      I'm really sorry to hear you're going through that, it's not easy and I hope you get your answers/results.

      I've completely lost my way of living, mostly bed ridden but 100% housebound and it is soul destroying. I have given up on the NHS as a comment was made insinuating that the pain was "all in my head". Any GP who would bother to read my notes would know that the anxiety and agora started well after I began having issues with my leg and it was very insulting and made me feel defeated. Hopefully I get the strength to keep going forward somehow, thanks.

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    • Posted

      Hello, I have gone through all of what you are. It is not fun and people look at as if you are nuts. I have recurring shingles in my right thigh that makes my thigh unbearable with pain. It shots across my hips and down my leg. It took doctor a year to believe me when I said I had pain all the time. Break outs are killer. I also have Eczema. That makes my skin hurt. I can't stand to put clothes on with it. I also have Perial Neuropathy in both feet. Did I mention I have Fibromyalgia, that is worse then great put together. My body is one big pain. I'm throwing these out to see if your GP or any of the rest have looked at them. The fear of the unknown is killer when no one believes you. I am on pain relief med. and Palquien(forgive spelling not a good one) the combo has allowed me to get out and do things. If I don't take it I stay in pain. I also take Valium for panic attacks. I stay home so much I get paranoid when I do go out. It's not easy to be in crowds, so I avoid them. Anyways I just wanted to throw those out there to see if helps to maybe finding out if any May be your pain. I will keep you in my thoughts and pray you get some answers. I can feel your pain. Jmac

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  • Posted

    I'm so sorry to read about your pain and discomfort.

    i also had trouble making my GP understand how I was feeling and the pain I was in.  I evidently got referred to the Orthopaedics Department at my local hospital.  It was discovered after having CT scans and an MRI, that I had a trapped nerve in my spine.  The pain caused by a trapped nerve is an unbelievable pain as you know!  I also couldn't go out due to the pain.

    i have been on, I think, every pain killer medication out there.  Nothing works.  Only resting with my feet up relieves the pain but of course as soon as I get upright the pain kicks in again.  I'm on Oramorph (morphine) at present which seems to help a bit as it makes me very sleepy.  At least I have a better nights sleep!  

    Keep on asking for a referral to see a consultant who deals with trapped nerves.   It was the Orthopaedic Dept which sorted me out.

    You have been in this pain for too long and now have to cause a fuss (as I did) and insist that you need somebody to deal with your pain.

    When I actual finally saw the consultant surgeon, he asked me how long I had had my pain.  When I told him over a year and that also I couldn't get my GP to refer me earlier, he shook his head in amazement! 

    Now I have been informed by my consultant that due to the delay in referring me my prolapse has got so large it is going to be a very difficult operation!  Also, that he doubts that I will have 100% improvement to my trapped nerve in my spine.  I will be lucky to get a 75% improvement he tells me!  I am trying not to think about the operation.  I will be pleased if I don't have to be in a wheelchair and pushed by my 77 year old husband in future.    No doubt so will he!

    So, returning to your own problems, I can only advise you ask to be referred to an Orthopaedic Specialist.  Somewhere you will meet the right person who can help you!   It's just such a long wait but keep pestering!  Good luck and please let us all know how you get on.

    Sorry for my rambling!

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  • Posted

    Hi everyone, thank you so much for replies. I'm sorry I'm not replying individually right now, my head it very fuzzy. I'm so sorry all of you are going through similar, although it makes me feel less alone in it.

    I feel that the NHS have abondoned me, and they know because of my agoraphobia I can't go out and see them to demand help. I was removed from my house a couple of months ago in an ambulance due to severe dehydration. The hospital doctor was very surprised about my situation and wrote to my GPs office say they felt that oral sedatives would be advised to get me out for some much need healthcare (dental etc.) I've heard nothing since.

    I imagine my income will be stopped very soon as I won't be able to attend my ATOS medical (All UK people will know what I'm talking about) And from there I'm unsure what I'll do. 

    Reading that some people have made progress fills me with some hope, but I think It will take some time until I'm able to fight for medical help.

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