Me "I want referral back to Rheummy", Doc "Not a chance"

Trialia

clemmatis wrote: »

Trialia, nortryptiline causes side effects in fewer people (and is less sedating). Both it and amitryptiline can cause hallucinations, nortryptiline will cause it in fewer people. I read up on all this after I had the bad reaction to amitryptiline.

Yes, I know. That's why they tried me with nortriptyline in the first place, because they expected it to have less side-effects. Which it did... just different ones. I don't have much luck with medication sometimes.

cally6008

The amitriptyline was making me zombiefied, giving me nightmares, starting to give me hallucinations. The nightmares were happening within 10-20mins of getting in to bed and going to sleep. My other half was on constant standby to help bring me out of them. Like Trialia, I would rather have higher pain levels than go through using Amitrip. again. I was on it for nearly a year.

Someone asked what painkillers I was on .. 15mg codeine and 200mg ibuprofen, taken together and usually before a shift at work. Daytime is not too bad as I can use the distraction method, potter around house, mess about on facebook sort of thing to take mind off it. Evenings and night-time when I'm tired and feeling fatigued is when I tend to be at my worst. If I'm really struggling then its another lot of codeine+ibuprofen within 3 hours and I've seen me having to take paracetomol every other 2 hours as well.

I do need to hunt out letter from consultant and the one from foot clinic as well and get phone numbers and ring people up.

I don't want to be in pain. I don't ask to be in pain. But I am in pain and after 6 years and getting passed from pillar to post, I think it's about time a doctor said "yes, you have (x)" and stuck with it. The first 3 years I was told kidney problems, female bits inside problems (and examined .. YUK), bladder problems, rushed into hospital with suspected appendicitis, had xrays (and was told by person doing them that I was TOO young to have any back problems).

If I don't reply and answer every single question, it's because I prefer to let some folk wind themselves up wanting to know answers about every little detail and then I just LAUGH at your postings for being pathetic .. (only applies to a couple of people on this thread)

adviceforall

I have been on amitriptyline for probably 7 years or so 50mg daily, without many problems. I did manage to come off them doing it very very slowly but the rheumy wanted me to go back on them. The only trouble I had was when I was switched from Amitriptyline to a different drug and was not told to come off slowly and I suffered really really bad effects, I didn't know if it was coming off ami or side effects of the new tablets or both, I lasted about 3/4 weeks when I was totally fed up with feeling really really ill I went back on them and all the symptoms dissapeared like magic.

clemmatis

Trialia wrote: »

Yes, I know. That's why they tried me with nortriptyline in the first place, because they expected it to have less side-effects. Which it did... just different ones. I don't have much luck with medication sometimes.

I'm sorry, Trialia, that's bad luck. I think they really can't tell who'll get these reactions, which is a pity.

Trialia

clemmatis wrote: »

I'm sorry, Trialia, that's bad luck. I think they really can't tell who'll get these reactions, which is a pity.

*nods* It is. I'm unfortunate in that I'm balancing FMS and HEDS with rapid-cycling untyped bipolar disorder, asthma and migraines, so it really is all about the balancing act. I can't take benzodiazepines either, they make me manic instead of relaxing my muscles. :P

clemmatis

Trialia wrote: »

*nods* It is. I'm unfortunate in that I'm balancing FMS and HEDS with rapid-cycling untyped bipolar disorder, asthma and migraines, so it really is all about the balancing act. I can't take benzodiazepines either, they make me manic instead of relaxing my muscles. :P

it must be almost impossible to get the right balance of different drugs. Not being able to take benzodiazepines is rough (I know they can induce mania), they suited me well. (I went off them because I was sick of grovelling to doctors to get them.)

bigjl

Just to confirm I can do the "bending thumb" trick, I am not diagnosed with HMS, have been on a sack load of meds and my GP and Rheumy won't give me Amitriptyline, or a week or two long course of steroids to rule our PMR, there is nothing that I can do or say to change their medical opinion, just because I don't agree with my GP and Rheumy doesn't make them wrong, I have had extreme side effects from Sulpha, fatigue, join pain, joints swelling, abdp oain and cramps.

My pain has increased dramatically since being taken off cocodomol, and put on codydramol, nothing helps, Ibuprofen does nothing neither does Diclofenac. I have also been taking Gota Kulo and St Johns Wart, to help with inflammation and depression. Also other stuff from Holland & Barret to try and deal with the reduced congnitive functive and memory problems caused by my medical conditions.

There will never be a time when I would speak to my GP or Consultant in the dismissive and arrogant way the OP has, unless she has misquoted herself in the initial post.

Every drug has side effects, some will have side effects that have to be treated by other drugs, thus introducing other side effects.

Remember that the accepted medical definition of a poison is ingestion or obsorption of any substance in sufficient quantities as to cause harm. In the appropriate dosage almost anything can be considered a poison.

Also the side effects in the leaflet are there because the drug companies are duty bound to put every side effect that is reported in there, no doubt due to the risk of litigation. Hence why some antdepressants or anti psychotics make mention that they may make you have suicidal thoughts, which might not be caused by the medicatio, but it has to be made a note of.

Also interesting is that there will be an Amitriptyline overdose in every ICU/ITU in the UK at any one time, and the medication is given to the very people at risk of suicidal thoughts, it is also lethal in very small quantities. But if it works for you then it will tend to work very well, it is a shame that some boardmembers haven't had good results.

I shall be asking my GP to try it at my next appt, I will try anything if it means that I don't have to leave my job.

Especially as it is accidents at work that have caused all my medical problems, won't stop them refusing to pay my Tier 1 ill health retirement and sacking me due to Capability.

SingleSue

I am on Amitriptyline 10mg and to be honest, I have no problems with it whatsoever (praise be, something I DON'T react to for once!).

Initially it made me slightly more groggy in the morning but an extra cup of tea did the trick there but the biggest bonus I found was the ability to sleep during the night...unfortunately, that effect didn't last as long as I would have liked as the interupted nights are making their comeback again.

The codeine however, I just cannot get on with, it makes me feel so ill, I can't take it and then stay upright, I have to lay down or I throw up big time plus it makes me feel muzzy even after the pain killing effects have worn off..not suitable when you are the sole carer of 3 disabled children and need to drive a car as part of that care. So I have given up trying to take it during the week when I know I will be driving a lot of the time....Friday and Saturday nights are ok though.

To complicate things, I can't have paracetomol (allergic) and I am not supposed to have ibuprofen (asthmatic)....but ibuprofen has always been fine with my asthma.

I too haven't got an HMS label, I have a hypermobility one (I was very hypermobile, scoring 8/9 on the Beighton score) but not with the added syndrome (never asked and never been told)..in fact the only label I have is lower spinal arthritis, wrist/hand arthritis and probable arthritis in my feet, knees and hips.

Eldest son has the HMS and EDS label, youngest son has the HMS label.

faerielight

hi there, I sympathise, i have fibro plus m.e and other illnesses and the pain from fibro is intense.
i tried amytriptaline, tramadol, gabapentin, dihidrocodeine, solphadine and was taking so many opiate meds and nothing touvched the pain, but my gp put me on pain paches bu trans 10mcg/hour and its been a miracle and I find the pain i down to a 2 out of 10 which is totally toleralble.

Have you asked to be referred to a pain clinic?
i'm still waiting, but my gp has found the right drug for me. the skin flares up in the patch but i can put up with that;)
hope you find something that works. ps i have ibs too, i found a change in diet helped me .hugs, faerie x

Trialia

Sue, if your kids have EDS and you have such problems with hypermobility as you do, it's highly likely you do have it, especially given that arthritis like that is often a secondary effect of HEDS (thanks to the damage done to the joints). It's one of those hereditary conditions that tends to get worse down the line - my dad and I both have it, but he is able to walk unaided most of the time where I carry and use my walking stick daily.