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Chronic back pain for 10+ years, history and hello

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Hi everyone hey

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 I started with flares of wrist pain sometimes with finger/hand numbness and weakness alongside it. 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, so neck problems were ruled out (perhaps not wisely without an MRI). 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 a bad back 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, the midwife and doctors saying it was probably my SI joints. After having her (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. I had fallen heavily on my bottom (off a stool on a slippery floor) the year before but not sought help at the time as I was embarrassed. 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 done before sending me off to see anyone else, to save time. I got an Xray in Casualty when I had another 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 constantly getting embarrassing tests for cauda equina (this still happens now, I'm beginning to think I'm irresistible) due to mild bladder issues.

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 successful (to a degree) bilateral facet joint injections at L3-S1 in May of that year. No further tests were done, but the consultant felt I had facet joint problems and a broken (floating) coccyx.

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. When we moved, I hit a brick wall. The GP referred me to the Chronic Pain Service but have been really terrible for communication since. 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. On my way out, he made a passing comment telling me to consider whether I was ready for more surgery, but he didn't explain what.

By October 2012 I knew I couldn't go on waiting, my pain was severe, and the nerve symptoms were more severe, widespread and constant, with both sides effected. My numbness/burning spread to my lower back, buttocks, pubic area and groin (cue more cauda equina tests). My feet were hurting and I was falling quite frequently due to wobbly legs. It was one great big flare from September 2012 to now, some days slightly milder but still worse than it was.

Due to clerical error, the facet joint injections didn't happen til November 2012 (very unsuccessful, making pain much worse since). I got my MRI a month ago but it was only a lumbar one, another clerical mistake. The GP is reluctant to medicate me at all (he is terrified of prescribing at my level and took weeks to ok my usual meds) and he stopped my morphine prescription as he felt it would interact with the Butrans. True in some cases but not mine, and I am lost without it on bad days. I have been relying on a small amount of Nefopam I was given at Casualty a couple of months ago, and that will run out soon - the GP is very unlikely to continue it.

I am now on 35mcg buprenorphine patch (twice weekly patch) and 300mg pregabalin, although I am weaning myself off the latter due to weight gain - I have gained a dress size since starting it despite eating less and far better than before. I finally got my "urgent" appointment through (requested in October), and it is for the end of April, a full year since the last one!

Over the last month the GP has done a blood test for "everything" and tells me I can't possibly have rheumatoid arthritis (no RF), any other kind of arthritis, or other autoimmune conditions, because they would show up - that said, he wants to repeat one of them due to an abnormal level (WBC I presume from him asking when my flu came on, which was a week after the test). I had had an Xray of my right heel as it was hurting very severely, and have a bony lump, fairly common but I am not allowed physio for it as the pain clinic have told the GP no. They have said the same about any exercise above normal day to day activity that I can manage. I want to go swimming though. Sad The GP says I just have to wait and see if the heel pain goes away, and if not he might think about referring me to a rheumatologist - not sure why if he's so sure I can't have any AI problem?

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? The one bit of good news is that the GP has finally referred me to a neurosurgeon and I have received an appointment for the end of this month, which was a really nice surprise as I expected it to take longer. I am really putting all my hope into that appointment. I have no clue what to ask though as I really don't know what possibilities we're looking at diagnosis wise.

I know this sounds really daft but I'm actually hoping my MRI was abnormal, because if it's not I have nothing at all backing me up and helping me find out what is wrong. I feel a bit like one of the characters in a film noir where noone believes them that they're telling the truth lol!

Have any of you had a similar experience, or does my (epicly long!) story ring any bells to anyone?

On a side note, does anyone have any tips for losing weight when you have chronic pain?

Sorry for moaning and thanks for having me.

Kathy
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First Helper rollar64
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replied March 3rd, 2013
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I would ask for copies of any MRI reports that you have had. Gentle swimming would seem to be an ideal form of exercise for you. Doctors dont have a full understanding of the reasons for back pain so there can be a tendancy among some to think that its caused by pychological problems.

I warn you to always dress well when you see a doctor and try not to get to emotional. Also if doctors ever act unprofessional or are abusive in any way change doctors.
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replied March 4th, 2013
Thanks very much rollar64, I appreciate the advice!

I have tried to get hold of a copy of the MRI but the department said it is against the "rules" to send them out to patients, and they only send them to the doctor that requested it. That means waiting for the Chronic Pain clinic appointment at the end of April, as they have not been fantastic at communicating outside of clinic. I think it must be a local rule rather than a legality as I remember distinctly getting the report after my 2nd MRI, which was carried out in a different part of the country, so a different health authority. That said, I don't know how useful a report would be, as they only gave me a very brief summary of a couple of sentences rather than the in depth vertebrae by vertebrae report I have read on various forums that (for example) US posters have shared. I think the depth of the assessment really relies on the wording of the request put in. The old report specifically answered the one area mentioned in the request. They went looking for L5/S1 and got the report based on that, if that makes sense? Perhaps if the request has listed my problems they will go more in depth into the entire area covered. Maybe not! Maybe they'd have needed a bigger form lol. Daren't get my hopes up regardless.

As for changing doctors, unfortunately although in the UK we do get told we have a choice, that choice is often very limited when it comes to the less common services. In the case of the Chronic Pain service, there isn't another hospital I can be referred to although there is another consultant in the service I am already under. I have been warned off breaking the continuity again by changing doctors though. I can see it from both sides - I want to be able to know I can have another doctor but don't want to have to start this process all over again like last year. I don't think I have it in me to wait another year to take one step forward.

I've had a bit of a bad reaction psychologically/physically to the Nefopam the last two nights running so am not going to use it again, hard as it is without any other "topup" medication.

Thanks for your reply, it makes a huge difference x
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replied March 4th, 2013
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I have had that experience in australia they have changed the law here so that patients are legally entitalled to copies of radiology reports. But i am still told on occaisions "oh no" its against the rules.

I re read your post and realised that if you have had facet joint injections then you almost surly have artritis in your facet joints. This is probably not rheumatiod arthritis but more lickly a form of osteoarthritis. The type that develops in peoples knees from to much "wear and tear". Its a common finding among people with back pain and can be seen on an MRI scan or if its realy bad on an xray.

It would be nice if you were given the full clinical picture of the problems that you face.

If you do try to get more info from the medical professionals you are seeing try asking straight forward questions like for what condition am i receiving facet joint injections remember to try and stay polite i would hate to damage the relationship you have with your doctors by having urged you to question them.
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replied March 5th, 2013
Thanks again rollar64. My facet joint injections were carried out by the chronic pain clinic as a means of diagnosis (they said it's a common way of working out the problem) as they had not even had a copy of my MRIs at the point of the first set. They will have had the reports since of course. The last set of facet joint injections made things so much worse I will never have them again. I don't think the pain clinics here are really focused on diagnosing as much as treating the symptoms. When I asked in a letter what I was being treated as, or what was my current level of diagnosis, I was replied to with "lower back pain and radiculopathy". That's the same I was referred to them with so it's been a long haul with very little if any progress. I want to be much more hopeful for the neurosurgeon's appointment but I think I am setting myself up for an emotional fall if my past history of appointments with others is to go by. I am thinking we will get fobbed off for another few months, but I can't even think that way because I've been in that position for years now and I keep getting told just to hold out a big longer. Others have it a lot worse I know, so I am really sorry for sounding a whinger. Been an exhausting few months here and I just have no motivation left! xx
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replied March 6th, 2013
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Good luck with the specialist Kathy post again anytime.
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