No Diagnosis. crap painkillers and doctors that won't listen

[PamSmith]

14 year ago this October I had a 12 hour long gall-stone attack, when I eventually passed out from the pain I woke up to find I could barely move because of back pain. Since then my pain has gotten better and worse over the years. I have tried no end of pain killers, all of which have eventually either stopped working or the pain has become too much for them to help with. My doctors insist that I have chronic lower back pain although the pain covers the whole of my back from the shoulder blades down. I had an MRI 12 years ago and some radiation test...sorry can't remember the name...to check my nerves. Both came back clear. Since then I have been to the Chronic Pain Clinic twice. The first time was quite helpful and after 2 years of pain the exercises helped me cope better with the pain. The second time I stayed for an hour and finally asked if anything had changed from 12 years ago, I was told no so I politely left. Couldn't see the point of sitting through another 12 weeks or so of being told how to cope with pain I'd had for years with the same techniques they gave me 13 years previously. Last year I went to the doc and stood crying and practically begging him to refer me to another specialist, I was told there was no point and it would be a waste of time. Then just before xmas I fell...again...and damaged both wrist and chipped the bone in my elbow, thanks to a doctor in A&E referring me...and shaking her head in disgust at my gp....I have finally seen a spinal surgeon who has referred me for another MRI. The ATOS test gave me 12 points which I have disputing so my depression has gotten worse over the last 9 months. I have stopped taken the Dosulepin anti-depressants because they stopped working, told the doc and he said...oh they must have helped all they can...then didn't prescribe me anything else. I'm on the highest dose of Pregabalin and the highest of Solpadol, the only time either of them help is when I take 2 Pregablin at night before bed so I can at least manage 2 or 3 hours of sleep at night. My questions are...FINALLY ...What other painkillers are out there that will help with my back pain? Oh forgot to mention that my leg goes dead occasionally without notice and I drop to the floor....OUCH....I've had all the usual, and the doc mentioned morphine which I knocked back. Morphine make me ill, and patches...that was over a year ago and nothing has been mentioned since. I've broached the subject with him and he glides over it and onto something else...EVERYTIME. It's a shame that he seems so non-comittal about my pain when he was so supportive when we first went to him, after being ignored and basically being called a liar by my last GP. . Now its as if he doesn't care any more. I have been smoking marijuana for the last 8 years or so to help and it has, but now the pain is just too much for even 'happy fags' to help. Sorry this post is so long, I felt I needed to explain everything before asking for help.

[moggiemay]

Hi Pam, You are having a bad time of it, I am sorry the medics don,t seem to get it right.

You say it started with gall bladder pain? Did you have pain over your liver and your right shoulder? Did you have a Cholecystogram ie X-Ray of your gall bladder or an Ultra Sound scan? These test would have shown any gall stones !!

You had an MRI scan and a Radiation test, Was this a Bone scan? The MRI would have shown up any disc problems and or osteoporosis ?Have you tried a pain patch called Versatis, this is a local anaesthetic which you put on your back for 12hrs during the night, There is also a fairly new opiate called Tapentadol which is good for nerve pain. I know that Morphine ect doesn,t work,

When do you have your MRI scan? and are you having an injection of a contrast medium called Gadolinium which gives I think a 3D effect, Ask about it.

Sorry about all the questions, I sound like an agony aunt.I had a procedure done at a pain clinic on my upperback in December but the pain has come back, I do have several discs indentine my spinal cord but the Neuro Surgeon said there was nothing he would do !!!

Keep in touch Pam once you have done your home work!!, perhaps you have had all these tests,anyway I hope things work out

Kind regards Moggiemay x

[PamSmith]

Thank you Moggiemay. I did have an ultrasound for my gallstones and I had several, never had them removed as the surgeon said he wouldn't remove them until I lost weight, so I lost weight. Then he said he wouldn't until I had a diagnosis. Well, almost 14 years down the line and still no diagnosis, so no op. Luckily, for some reason I haven't had an attack at all for about 10 years so I'm just glad I didn't have to be cut open.

The radiation test was for my nerves. I drank what they gave me, went away for half an hour...nowhere near children or old people...and had my scan. For the life of me I can't remember the name, Both tests cam back clear. There is supposedly nothing physically wrong with my back. The I guess if this next one comes back clear, its on the 25 May, is it, afterall, in my head all these years?

Nobody has said anything about the MRI except for the time and date, though I think a call to the specialist to ask about Gadolinium is most definately in order.

Again, thanks Moggiemay. I'll keep you up to date on the trials and tribulations of my back.

Pam

[Calceolaria]

There is a danger of some degree, that some back pain and numbness/tingling, can be caused by compression of a nerve coming from the spine. So far, your tests for this have been negative, which is very good news. It may be that your pain is muscle tension which can compress nerves but not in the way the vertebra of the spine can. If your problem is caused by muscle spasm (which can last years), you could look at massage, Physio, acupuncture. If you prefer meds, there are muscle relaxants your doc can prescribe. I hope your pain is muscular as in my view, it can be helped more easily than nerve pain or bone structure pain. It is still horribly painful of course. Your next lot of tests should show what path you need to be travelling. I am not medically qualified, just imparting my limited knowledge.

[Hidden]

A good sports physio will be able to find the origin of the pain and be able to treat it. They will also givce you exercises to do at home, so you won't need many appointments. There may be some trigger points firing off and the physio will ve able to test these for you, and treat them. You can do it yourself once shown, its accupressure on specific points, and you can do as often as you like.

Accupuncture may help, and the electrode accupunture too. (sounds all a bit frankenstein, but once the needles are placed they attach electrodes and run electricity through the needles. The effect is like a tens machine, and should not hurt, but be a pleasant buzzing feeling as each electrode is specifically set).

It may be that the dr can't prescribe anything while you are using marijuana because of interactions, if so, he should be discussding this with you.

Meditation and mindfulness will help with stress and anxiety, and in time, you will be able to push the pain into the background.

[teadrinker]

Pam, I read the title of your post and could relate to it straight away, as I've been in that situation. Luckily I finally found a consultant who listened and tried some new tactics that have helped a lot (though not got rid of the pain completely).

Is there another GP you can see? If you're having the symptoms you describe in your leg you definitely need that looking at, as Calceolaria says.

I've found physio helpful (for shoulder pain).

It is miserable when nothing seems to help and when you haven't got a name for what you've got, and there is a tendancy for chronic pain to be dismissed by some doctors. It's not all in your head just because there isn't a name for your pain.

Don't give up hope.

[mr-flibble]

Problem is long term chronic pain can well give you neuropathic pain issue, if it does normal pain med's won't do squat as the neurological nerve receptors don't respond to normal analgesia, all they can give you is Gabapentin or Pregabalin and or one of the 16 odd tricyclics such as amytriptyline, for me the first two made me very ill the tricyclics help but aren't 100% , I've now started using a less main stream alternative and it's helping but the bottom line is if you suffer serious pain from long term health issues chances are you will be able to come to some sort of pain/life balance its a long hard road but it's very doable but that said chances are you won't find the magic bullet although some enterprising people will be willing to sell you an expensive placebo.

[Boozybird in reply to mr-flibble]

Mr Flibble, What's the less main stream alternative, she said with genuine interest?

[PamSmith]

Thank you all for your advice and help. I am actually in the process of giving up smoking both tobacco and marijuana, not as easy as it sounds. Though the doctor hasn't mentioned anything about giving me different medication for when I give it up completely. I know I've been dragging my heels, but I am honestly terrified of how much pain I will gain and mobility I will lose when I'm off it completely. At the moment I use a pair of crutches inside, also furniture, walls, hubby, kids..lol..to get around the house and a stair chair to get upstairs and a wheelchair outside. Now that I'm down to 2 or 3 'happy fags' a day I feel terrible, not in myself but in the amount of pain I'm feeling.

I don't suppose it helps that the doctor looks at my notes and sees the amount of damage that I've done to my back over the years and they expect to see something there, when they don't they seem to look at me as if I'm lying. When I was young, about 5 I think, I was pushed off a wall and broke/displaced my coxyx, then when I was 18 I had a 6ft, 2inch thick glass shelf dropped on my back, at 23 a useless anesthetist snapped a needle off in my spine whilst giving me a spinal tap, she dug about a bit and got it out...now THAT hurt..lol. Then finally at 29 my fated gallstone attack.

Now, I stumble several times a day and fall, actually hitting the ground, about 4 or 5 times a week. Given up going to the hospital when I hurt my wrists or elbow now, just so sick of being told that its my scaphoid again but they just put me in a splint and a sling for my elbow, so I do it for myself now. I know I'm bloody stubborn and I annoy the hubby so much when I won't go. Before you say anything..lol. I know I should go and get a record of the fallls but sitting there for 4 or 5 hours and being sent home with nothing seems pointless to me.

When I saw the specialist he was surprised that I've been offered nothing but medication. Its not that I prefer it, its just that I haven't been offered anything that will help. He mentioned hydrotherapy and physio. I'm hoping that after this MRI that he will bring something else to the table.

I'm going to be a Nan in September and it would be lovely to see some kind of light at the end of this very long tunnel, so I can do things with my grand-kids that I couldn't with my kids.

Pam

[coolpolitealex in reply to PamSmith]

PamSmith, do you mind me asking how heavy you are, because weight gain if gained quickly can be quite a factor in determining what is going on, reason I ask is that thing called Munchies , because you said you'd been smoking weed for 8 years which is quite a long time as I myself smoked for many years and it made me listless and plomped in front of the TV , It's just a thought best Alex

[Calceolaria]

Pam, I became a granny for the first time on Saturday. A beautiful little boy. Unexpectedly, I ended up at the delivery, which was a difficult one. I can empathise with your concerns about participating fully in your grand child's life. My mother was like a dynamo granny and we all relied on her support, fun and loving kindness. I will be doing my damnedest to try to be my best, whatever that might be.

What you say about your back confuses me. You outline a series of injuries including a possible fracture but none of them show on imaging ? Have you had X ray as well as scan? When the doctor broke a needle in the area of your spine, was this meant to be an epidural? For anaesthesia ?Were these incidents seen as injuries on imaging at the yome theu happened ? if do, could they have healed ?

Finally, why do you think your gall bladder attack is significant after all these years ? I'm not being dismissive, Im genuinely trying to understand. Do you suspect your gall bladder is inflamed ? Have you had ultrasound of the area lately ?

Chronic pain which does not get a satisfactory diagnosis for the sufferer, can cause a great deal of anxiety, where you are left wondering what the hell is wrong and if medicine doesn't come up with an answer, all you can imagine is that there must be something terrible which they just haven't discovered yet. On the other hand, I can't understand why when you are falling over regularly and actually breaking bones, that you have not been admitted to hospital for every test going. What do they say about that ?

[Boozybird]

There is some reason for optimism there Pam if the consultant thinks hydrotherapy and physio might help? You have been through the mill and deserve some helpful treatment so you can get moving and look forward again. Sometimes we search for a proper diagnosis and we get one eventually but labelling it doesn't change much. Best wishes.