Remember me "Burning back pain and Chinese Dr's"?

[jacquieb]

Hi everyone

I thought I would update you with what's been going and will try and keep in short.

The Chinese Dr's I saw were lovely ladies, it was a long journey for me, but as you know you would travel the other side of earth if it could offer any form of improvement or cure with this awful condition. I am now on week 5, have medicine to drink day and night - boil and cool - have acupunture, reflexology and a massage thrown in. It comes at a high price, but even they have decided that my condition is far too complex. If you have conditions such as IBS, or similar, I think they have good results, but the language is another issue. Its bad enough talking to Dr's etc in our own country, but this was difficult. The first thing they ask you to do is to stick out your tongue, mine is full of large dents and small cuts, a sign apparently that the spleen is not as it should be, hence the medicine. I am not surprised with all the drugs I take!

The burning back issue was the biggest concern for me, and didn't get better, infact worse. I got to the stage where I couldn't sit down, lay down, or have anything touch my lower back. The sweats I was experiencing was unbelieveable, unlike the ones with the menopause. Of course with the sweats came the cooling down, and than the feeling of getting the flu. This was the process. sweats, burning of back and inside vagina (flare up) increased heart beat, muscle twitches/spasms under the chest. My central nervous system was on red alert and didn't know what to do to calm it down.If someone had come near me with a match I would have gone up in flames!

I decided, as my pain consultant was on leave, to go and get bloods down to see if there was any inflammatory process going on. Root canal treatment had also been carried out around the onset of my burning back. All the tests of course came back negative, and subsequently had the root canal done again!

To be quite honest and frank, I had had enough and there was no-one I could turn to. I wasn't depressed or in need of counselling, I needed someone to basically switch me off and start me up slowly.I could see for the first time why people who have any form of chronic illness or have been diagnosed with something like cancer would want to give up as life becomes meaningless and miserable for the suffer and those around them.

Someone must have been looking down at me on that Monday morning, as I decided to look into my draw of meds and take 100mg of Pregabalin. I had only taken this med for a week previously, due to the side effects and that it hadn't help much, but now of course I was into the next level of CRPS, Chronic Regional Pain Syndrome -which had somehow been triggered and it scared me.Within hours I had no sweats, burning calmed, I was elated.

With Pregabalin - for me that is - has helped with the high temperature, and the burning- although I can still feel the back slightly. The side effects like fuzziness, tiredness, fluid retention, are still there but I can tolerate that. Interestingly enough, the process still goes on, but the brain is told not to react, its weird, than you wonder why the sensitivity continues, or if it will eventually calm down?

This situation should not happen to anyone, its appalling. More time and effect should be given to people like us, so come on you medical professionals out there please help us, give us back our lives which we once knew and loved, instead of this deep dark hole that we now live in, and can't seem to escape from, no matter how hard we try!

lol

j

x

[helenlegs11 Volunteer]

At least you are trying. I think that's part of what keeps me from jumping down that 'deep dark hole' I have been in worse places mentally (divorce) and physically (days of muscle spasm,'locked' in bed) but there was an end to those 'drama's' or a good percentage recovery but this goes on and on and. . . . . . . . . . . . 'time heals'.. . . . yes but time just makes it darker and deeper and won't allow us to forget. Groundhog day just keeps on playing. I second, third and millionth your cry to the medical profession.

Glad the pregabalin is working for you Jaquie.(did think the Chinese thing wouldn't but you did try!!) have heard some good reports from different individuals about it.

I can't take it. . . . . not because of side effects . . . i would give them a go but because my practice won't prescribe it as it's 'EXACTLY' the same as gabapentin. (no it's not!)

I have heard that a few GP practices are doing the same because of cost, although I asked the cost question and was told no, it has to be.

As a body the medical profession are not only ignoring us they are letting us down, can't understand it as we are so nice

[PPSN_JudyB Pelvic Pain Support Netwo]

Echo this regarding the acupucture , reflexology - tried two types of the former as well advance reflexology to no avail. Before the nerve stuff set in , I found that deep tissue/remedial massage helped.

Regarding Pregabalin, my GP surgery didn't prescribe it and I had a private prescription for it for one month. I think it's very strange that the availability of medicines varies from one practice/area to another

[jacquieb Volunteer]

Its all down to the cost I am afraid. Gabapentin costs basically nothing, Pregabalin, costs approx £100.00 plus for a months supply.

I have tried both of the drugs, and can confirm that they are NOT the same, they have different side effects and for me Pregabalin has less. I couldn't tolerate Gabapentin, I thought I had dementia and I turned into some kind of zombie. That's not to say that Pregabalin haven't but they are more tolerable and once they get into the system your body adjusts.

Don't quote me as I can't be 100% sure, but each GP's practice has an allocated budget, and it's down to that.

Had the deep tissue treatment, aggravated my back, infact it was funny after one of my sessions, I started to feel my back burn. It certainly generates heat.

Talking of nice Helen, its funny I am sure they don't thik that when I walk in the surgery... although I always smile. I have requested some literature in the reception area as there is nothing about any sort of pelvic issues, even pregnancy, its all about when you get old.

Anyway they listened and apparently are doing so..... so I am doing something right?

What a nightmare...

lol

j

x

[PPSN_JudyB Pelvic Pain Support Netwo]

Well Jacquie, that's progress if they listened to you - I wonder what sort of information they will come up with: are you going to follow this up with them ?