My name's Kathy and I live in Newcastle-upon-Tyne in the UK with my husband and our 3 children (and various pets).
I am here hopefully to get some guidance from you guys if you don't mind (right section I hope?), sorry about War and Peace below.
Firstly, I'm 35 if that helps to clarify anything in my history lol.
In secondary school, roughly age 15, I had a period of upper back pain that I got some physio for. At around the same time as the back pain I started with flares of wrist pain sometimes with finger/hand numbness and weakness alongside it (little and ring fingers of both sides and the outside edge of each hand). At age 25 I had a neural impulse/function test which ruled out carpal tunnel. I had a neck Xray in case it was that, it came back fine. I remember feeling that it wasn't worth pursuing as both tests had come back negative and I felt I was wasting their time.
I have 3 children and had minor back issues with each. My first was a huge baby and I had minor SPD and lower backache. I didn't have too many problems with my 2nd, but with my last pregnancy my back "went" at about 6 months, and I was given a brace to wear. After having ber (1999), I had periodic sciatic pain down my right leg. It didn't really last long so I didn't worry. However, over the years my feet and sometimes the outside of my right calf would go numb for a bit sometimes. My sciatica got gradually worse and in 2009 I eventually decided it was worth getting help. My right leg had started to weaken at the knee joint sometimes and I would stumble. I was also getting a dull pain in my lower back, this was not all the time. I had a new symptom that scared me - numbness and burning in the skin of my outer thighs. At this point that wasn't there all the time, and mostly happened when I was laid in bed.
I went to see the GP and was referred for physiotherapy. My GP was amazing and knew to get an MRI "booked" before sending me off to see anyone else, to save time. I got an Xray in Casualty when I had a fall and they said my back was "perfect", making me feel a bit of an idiot for asking for help. However, physio didn't help, and my symptoms got worse. By early 2010 I was having to use elbow crutches to walk. I was (and still am) mildly incontinent and constantly getting embarrassing tests for cauda equina (this still happens now, I'm beginning to think I'm irresistible).
My MRI came about and the results went missing. The GP referred me to a neurologist/neurosurgeon and I had another MRI in preparation. That MRI showed a herniation at L5/S1. The neurologist booked me for a microdiscectomy but was confused as to why I was getting the other symptoms as he felt that where the herniation was would only cause pain up the back of my right leg. He warned me the other problems would not go away with that surgery.
I had the op in Jan 2011, it reduced my sciatic pain and the weakness in my leg. However, within 2 months my neurological pain was getting worse and my pain was back. I asked the neurologist if I had DDD, he said "Of course, that's the slipped disc we fixed", but didn't tell me why I was getting the other symptoms or recurring pain. I was referred to the Chronic Pain Clinic and had bilateral facet joint injections at L3-S1 in May of that year. It helped with the back pain for a couple of months so was considered "very successful" by the pain clinic, and I thought I would just have to put up with the rest. No further tests were done. In December 2011 we had to move. At this point I was on Butrans patches (30mcg at that point), Gabapentin at maximum dose and morphine suspension for breakthrough pain. I still did not have a diagnosis for my ongoing pain. I was back on elbow crutches through my flareups.
When I moved, I hit a brick wall. The GP referred me very quickly to the Chronic Pain Service but have been really terrible for communication otherwise. In April 2012 I saw the pain clinic for the first time. The doctor was great, and I felt I was getting somewhere, he said he would book me for a full spine MRI (my back pain was starting to creep up my back and he wanted to see if the hand symptoms tied in) and my facet joint injections.
By October 2012 I knew I couldn't go on, my back was in constant high level pain, my thighs were now constantly numb/sore and the nerve symptoms were more severe and widespread, with both sides effected, and my lower back, buttocks, pubic area and groin experiencing numbness (cue more cauda equina tests). My feet were hurting on getting out of bed. I fell 3 times in a week and hurt my knee. It was one great big flare from September 2012 to now, some days slightly milder but not gone. Due to many factors (mostly clerical error), the injections didn't happen til November 2012 and I only got my MRI last Saturday, AND it was only a lumbar one. The GP refuses to change my pain medications without a letter from the pain clinic, which they forget to request for weeks on end (I asked for help at the beginning of October and was still waiting after Christmas) and to they stopped my morphine prescription as they felt it would interact with the Butrans, true in some cases but not mine. I had to write a complaint to the pain clinic, GP and local NHS complaints dept.
I am now on 35mcg buprenorphine patch (twice weekly patch) and 300mg pregabalin. I have painful reactions to the patches, but the GP says I cannot be allergic or I would've had them from the start. The patches still don't work, but they won't change me without me actually seeing the pain clinic. The complaint meant I finally got my "urgent" appointment through, and it is for the end of APRIL. I had asked the pain clinic doctor to outline possible medications and his diagnosis. He didn't answer the first part, and his official diagnosis is....wait for it....lower back pain with radiculopathy. That's the exact term the GP used to refer me to my original pain clinic with in 2010. I am no further along at ALL.
Over the last couple of weeks the GP has done a blood test for "everything" and tells me I can't possibly have RA (no RF), any other kind of arthritis, or Fibromyalgia, because it would show up. I had had an Xray of my right heel as it started hurting out of nowhere, and have a lump in the bone, but no arthritis showing in that part of my foot. I now feel that any "radiculopathy" will be permanent. I can't walk without sticks, sometimes I can't get out of bed, never mind manage the stairs in my house or go out. My legs are wobbly. The most time I have managed outside in the last month is half an hour at a time, perhaps once or twice a week. I lost my voluntary work in October and am unemployable. I am less mobile than many 80 year olds and it has been suggested I get a wheelchair (the docs don't agree because it'll make me give up trying apparently, don't get me started on that). I feel totally useless. I have no clue what to do now apart from wait for the end of April and pray I can hold out, I have done since October I suppose and I was sure I wouldn't cope another day then. The GP says he has discussed my pain relief with the consultant and they have agreed there is "nowhere left to go" with medication. I know that isn't true, so why are they saying that unless they think it's all in my head? I know it's not in my head, and if they think it is they should lock me up now. I feel they don't want to help me any more, I'm just a nuisance. The one bit of good news is that the GP has finally agreed to refer me to a neurosurgeon. It will take time, but maybe the answer is in the new MRI if NOTHING else is showing up? There has to be something somewhere or I am going to break down. How can I be this bad and not have anything backing me up?
Sorry for moaning and thanks for having me.