Hi everyone

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.

Kathy

[ Hi Kathy,

By my name you can tell all my problems are neck related I had c-4 thru c7 fusion. However I come from a long line of spinal problems. I will say I had member in family have the same procedure as you ---pain over time got worse ansd wore....to the point finally got another MRI --and come to find out its not un-common for the disc to - re--herinated again --2nd surgery for him was a fusion ...now he tons better for it. I would suggest get another MRI --and seek a good neuro --or ortho spine surgeon. Hopefully more back experts will chime in to help. Best Wishes !!!!

Hi mg_neck_prob,

Thanks for the reply! I do think it must be something along those lines although I am puzzled by the most severe symptom, the thigh, buttock and groin numbness and knee/thigh weakness issues. These are not L5/S1 issues, so I am totally stumped. I understand from looking online it could be a problem somewhere between L1 and L3 but when these symptoms started (nowhere near this bad) nothing was mentioned by the neurosurgeon at my old hospital for that area, even with the MRI report (which I don't have). He was stumped by those symptoms, not even having an idea or test to try. His only focus was on the L5/S1, and he wrote off the other symptoms as something he couldn't explain or fix. Now these are the worst symptoms I am terrified it will still be unfixable. I suppose I just have to wait for the neurosurgeon appointment. The GP hopes I will get seen before the end of April, unlike the pain clinic (otherwise known as chocolate teapot clinic) lol.

I am hoping I will get a copy of the MRI report before April, it was ordered by the Pain Clinic so it might be that they don't "share". They've not been very helpful so far despite my promising first visit.

I forgot to say in my first post that the 2nd Facet Joint Injections in November 2012 were totally unsuccessful and I was disabled with crippling back and rib pain, and electric shocks down both arms.

Thanks again

Kathy
xx

I've had a phonecall from the GP this morning to ask me to go back for a repeat of one of the blood tests I had. He asked me when the flu symptoms started, and because that was quite a while after the test, he says he wants to repeat one. I have no idea which one he means but he wants me to be fully better before I take it so I don't get a "false positive".

Good Morning Kathy, I do think you need good neuro there is a disease called RSD --that comes from trauma esp from spinal surgery -- I think alot of people have it --you can even get it from a broken leg...etc... there is thread in here called rsd &crps click on quick links under marks forum --just a suggestion you might want to copy and paste this again in that site ...I def know its not in your head . Trust me I understand pain and even know after 4 level fusion I get nasty flare ups and the only thing that works for me is predisone ---takes awhile but it helped so much the problem is the nasty side effects. I wonder if its your white blood cell count in high. My other suggestion trust me I respect the medical community but its far from perfect. I was blown off almost a year before i could even get a mri --of neck then g.p said wow --its what i suspected all along --really u had me suffer in pain for a year sending me to chiro without having a mri --the min she got the mri results was your need to see a surgeon yesterday all 4 disc are pressed into spinal cord ---i went parlayzed on right side --surgery fixed that now...if it went any longer it would have been perm. I also had cancer kept going for a year complaining before i got pet scan then --wow --i was in surgery that same week. Now my g.p never questions anything I say . My point telling you all this is to obtain all your medical records blood work, mri , even surgery report. I learned the hard way you have to be your own advocate. Im just so very sorry your dealing with so much pain this needs to be addressed ...u need to fight for your rights not to be in pain. We show our animals more compassion then some of these docs show there patients.

Hi Kathy,

I am sorry to read about your ongoing and increasing problems. It sounds like the care you have had so far has generally been fragmented and only addressing the acute issue de jour. It really sounds like you need a good doc to comprehensively review all tests that have or have not been done and look at the bigger picture and not just try to alleviate an isolated symptom.

While it would stand to reason that a microdiscectomy would be done for a known disc lesion and a reduction of leg pain would be an appropriate response, it is concerning that none of your other widespread symptoms have been addressed. There may be one common cause or multiple that are contributory. And judging by your first post, your upper extremities are affected as well?

Cervical and then thoracic discs (while rare) can certainly be a source of back and lower extremity problems and should be considered. But when I hear that blood tests have been done for "everything" (an impossibility but I understand your point) I start thinking that you need to approach your overseer and start looking at other contributing issues like metabolic eitiology, polyneuropathys, demyelinating diseases and even environmental exposures that could be contributing to your plight. Yours is certainly a complicated problem(s) and likely will require you to aggressively involve yourself in the decision making process, especially considering how the NHS functions. Good luck, and keep us posted!

Hi guys, and thank you so much for the replies. I am sorry for the delay in my reply, I have been "laid up" with the flu and haven't really been up to using the computer til now. Unfortunately as I've got slightly better flu wise, my back has also flared, with the nerve symptoms being particularly hard to cope with. I am now getting horrible electric shocks, like red hot needles, up the entirety of my back and down my arms and legs. The burning on my thighs is worse and I can feel something "wrong" in my spine, higher up than my operation site (probably around the L2 area I think). I can't even wear a bra at the moment because my arms get pins and needles and the shocks get worse. I'm trying not to sound really moany in this but I have to say what's going on. I'll try not to be too whiny about it, although I think the lack of energy from the flu is making me feel a bit defeatist and low!

I rang the neurosurgery department today to see if there was any news on why I hadn't received a letter saying I was on the list. The lady I spoke to was really lovely and helpful. While I was on, I told them about the MRI I've had recently in case it saves time in the appointment process (she mentioned they might be holding off giving me an appointment while they arrange one, so that has cut that bit out). I also explained that while I am not very mobile I only live 2 minutes away from the hospital and will take any cancellation at any level of notice. I'm not doing anything, am I! In the meantime I am on their list but haven't as yet been allocated an appointment. I really do think though that this is where the answers might lie, as I feel I am not really getting anywhere with the pain clinic - I feel as though they are less concerned with what is wrong with me than they are at just dealing with the symptoms - I don't think that's unfair of me to think that?

I have got to go back for another blood test, but only once the flu has totally gone. Nearly two weeks in I am over the chills but not the weakness and aches. It's hard to work out where the flu ends and the "normal" backache/weakness starts lol!

Anyway I really appreciate the replies and ideas, I am going to do a bit of googling now to read up more on what you've suggested xxx

Another update...

I have a neurosurgery appointment through for the end of this month, I am so relieved. My back has been pretty bad and I have been very guarded in my movement because of that, obviously. However, life caught me off guard when I slipped on a magazine someone left lying about and jarred it badly two days ago. So pain is pretty bad at the minute and I found myself digging out an old bottle of Oramorph which had a drizzle left. The GP had taken me off that because apparently it stops the buprenorphine working but I have had conflicting advice there from the hospital. Either way it worked and I can't get more. I had some nefopam left from my last visit to Casualty, so have been using that as I know it's safe for me, but it has a very strong effect on my head and not so great on the pain. The GP would be unlikely to continue that, so I am stuck as he is reluctant to give me any "topup" medication at all. God knows what I will do when it runs out. I hope my back improves at least until my appointment.

I have weaned myself off the Pregabalin as I have gained a dress size since I started it, and that's not a compromise I'm willing to make for a medication that only gives very limited help (and then only very mildly on my nerve symptoms, not my "mechanical" pain). I am already a big girl and I don't want anything stopping me getting surgery if they say I need it, so it's not worth it. So now I am only on the buprenorphine patch, and paracetamol if I bother with it as it doesn't give me any relief despite what the GP says about the "pain relief ladder".

I started smoking again very briefly through a very bad night of pain but have stopped again. Again, I don't want the docs having any reason not to operate if I need it.

I could really use some advice on weight loss. The GP says that the pain clinic have instructed him that I am not allowed to exercise (other than manageable day to day activity), and I am not allowed physio. I wondered if I could get away with swimming as I'd like to lose a fair bit of weight before I see them at the end of the month. I have been eating healthily (far more so than before the Pregabalin) and yet have still gained weight on it, so I am hoping a combination of healthy eating and swimming will get some weight off quick? I have previously used Reductil for weight loss under the GP, many years ago, and I have wondered whether that would be safe with my meds, I would have to go through the GP anyway so will ask him too. I can't use the fat binder types (Xenecal etc) as I have IBS.

Hope everyone else is doing well, thanks again for reading xx

in some circles, IBS, is thought to be doctor speak for "I Be Stumped."
have you been tested for celiac disease? don't let the fact that you are over weight stop you from getting testing. Swimming has not been found so good for wt loss, walking probably better. portion control is important. good luck!

Dear Lady, I am so sorry for all you have been through. It sounds like the doctors that have seen you are shuffling you back and forth with no real solution if I read your post correctly. There is always help... it just sounds like they have given up. This is NOT in your head, and for them to suggest such a thing isn't right. Can you go for more opinions? If you can get a copy of your MRI report and Post it, there are many here who can read them and give you an accurate accounting of what is said in the report. If you are experiencing, bladder problems, that is an indication that there is definately something wrong in the spine. The important thing is not to get discouraged as you go forward. Get all your records, and see somebody else, Run off this letter to NT, Be the sqeeky wheel that gets the grease. You need more than what you are currently recieving in medical help. You qualty of life is effected, and I know how sad and depressed this can make a person. My first neruo was horrible, and it took several more interviews for me to find a neruo I did like and trust. They thought they were interviewing me, when the reality was I was looking them over!!!!! Your doctors also need to communicate with each other.
You will get the support right here on NT. Lots of spine issues going on, with fantastic information. Sometimes one of our friends here, can suggest a doctor in your area. These posts are from all over the world. Good chance someone will know of someone close by you.
Do not loose hope, but try to go forward, and find those that can help with out shuffling you around. That gets old real fast when you are in pain. You will be in my thoughts and prayers. I will also listen to you anytime. I wish I had more to offer in the way of ideas. I know back pain well myself, so I do know what you are going through. Has the SCS pump been mentioned to you? ginnie