Whats best Meds or no Meds..............?????????

[hobbbllliiingaround]

Before all this switching over and ATOS crap _ I wasn't doing to badly. I had not been in to see the doctor for a couple of years was on basic meds - very little as I struggle with loads of side affects ( very sensetive person haha) so had only taken low dose amytrip. and omeprazole after stomach been bleeding and paracetamol.......I had pain every day but having been told some years ago that there was no cure and that management was the best route---pace your self and stiff upper lip....go away ( you know what I mean ). Since January when I had to go back and prove all over again that I had an incurable - untreatable disease I have suffered from really high anxiety and been subjected to must try all these great new tablets....Spewing up Hallucinating...Gabapentin...Duloxetine....Pregabalin.....I have now had 25 visits with one or other of the medical professionals in a year..........wow ...what a great way for the government to save money..........There must be hundreds nay thousands of people...taking up appointments ..clogging up the system to try and prove the pain or disability is wrecking their life............what a waste of time and human resource all this farce is..............well I think so anyway...it must be costing thousand times what it was when you add in the extra fees of the Gestapo...!!!!!!!!!!!!!!!

[Extremelygrumpy]

Yep stress is my trigger point if my life ambles on I manage on my dosulepin at night and a ....clonezapam .... 2 little tabsat night and i sleep ...in the morning a lanzoprazole and I am in manageable pain never pain free but copable If I pace. The slightest change or stress In My routine and my body goes into flare, fortunately I have a med that is a muscle relaxant that I am not sensitive too so can go to gp and ask for short course which settles me back down .. Personally I would love a med I could take to leave me pain free but have accepted that is about as likely as anyone finding a cure. Had tried dietery changes and massages and relaxation and nothing really helps. I have trigger point injections every 3 months in shoulders and neck they make life bearable but I could not go med free much as I would like to.

VG x

[hobbbllliiingaround in reply to Extremelygrumpy]

Believe me if I could find something I could tolerate I would take it but this year I have almost been forced into trying all these new meds...like having fibro...Oh yeah I never thought to try anything in the last 16yrs....when I went to my Atos (beginning of year) he wrote my pain must be minimal coz I only need paracetamol.....honestly I felt like hunting him down as I had sat there and explained years of trying different tablets & gone into all the different side effects..

[fairycazzie]

hi there,

well it is difficult and its difficult on both parts trying to help as i have Dr customers and out side of hours and me providing a service for them (non from my surgery) they say it is difficult for them and they feel for the patients too they go by the book and do what is recommended for the patients and they feel frustrated too trying to help and feel for us too, but at work they act in a professional manner, but i talk to one or 2 out side of work and they know what meds i on and give me little bits of advice and know its difficult for me.

Dr's have even said can i give up but its the house etc etc etc and thats it.

I take Pre gabalin and like VG i take lansoperazole i take 30mg twice a day along with 400mg a day of the pregabalin and i have tried other meds you have mentioned and to no avail for me,

I take Diazepam for the muscle relaxant in my neck mainly as even Dr's say how bad i am and tell me not to drive, but it comes and goes so i do drive inbetween these attacks.

i have Zopiclone too for sleep

i have IBS which i do not really take anything i just steer clear of as much as i can that triggers it.

Half- inderel 160mg a day for rapid pulse.

Lactulose for those more awkward stubborn moments and they are!

I was told i could have injections in to cervical neck spine but i have managed so far as i am on the meds but it is hard very hard a lot as well as having BHMS/EDs and never knowing when i am going to fall on my back side.

Pre gabalan is not cheap and they will not waste it where they think not necessary.

they will try you on the 1st option which is generealy Amitryptiline then so on but each individual is different with sensitivity and allergies, so its all trial and error and we are kinda guinea pigs but they do not play with us not knowing what the consequences are they are very careful!

i get annoyed as no one ever spotted my conditions and past pillar to post but its not knowing form symptoms as there is 101 + lol its hard work as to diagnose conditions sumtimes and cannot get it wrong.

You just keep going and going as many times as you need as this is on record and shows how you are feeling! the amount of times i apologised for me feeling like i was being a pain visiting so many times, but now i just think well they get paid for it that is what they are there for and Dr's are there to listen to you , there are so many that are a pain and are verbaly abusive to Dr's i always say if you cna be respectful to them and smile the best you can then you get a lot better treatment too.

I have been on both sides of the fence working for the Medical profession so when i am down they know i am down.

walked into surgery in uncontrolable tears (apologising for it as i was in so much pain) was got in straight away.

its hard being patient as your suffering after your appointment which they see the next patient and the next illness, we walk away and go home and have to deal with it.

xxxxxxxxxxxxxxxxxxxxxxx hugs take care prob not much use of an answer lol

[hobbbllliiingaround in reply to fairycazzie]

Hi

I totally respect the medical profession........it was having to go through the whole palava again to prove to ATOS I was doing my best to take the medications on offer and get myself better.....................I would not be a doctor ....they need medals ( most of them any way) ...how they stay sane ..given how many cases they see in a day.....................xxxxxxxx

[fairycazzie in reply to hobbbllliiingaround]

Yeah i agree its hard because i have moments too with them. End of day i had my Dr for lot years theres a few in my practice and always new ones coming in and tried them all, some know more than others lol.

I had an issue with a young male Dr and was not keen on his way in dealing with things and when asked who i would prefer i would say 'not' this particukar one, but now he is fine! He is there to back me up like the rest.

Only when it comes to touching my neck i would make it clear not to touch and he would grrr i would suffer, but now he listens. When you have spinal cord compression in your neck the last thing you want is some one touching!

The ATIS i am not sure about it all and can understand your frustrations.

I have a customer with FM and we are a bit different in the physical side of what can and cannot do and it confuses me.

I get stressed.

The end of the day a diagnosis should enable Disability.

But my was on cards and i feel that it only takes so long as so many illnesses share similar symptoms so it is hard as to get it wrong now a days gets claims.

I am midst of should i or should i not claim from an op that has led my self into this state i am and as anyone i look 'healthy! Grrr

You keep on going no matter what and get what you are within your rights to get because on a personal opinion these days we are a 'Number' xxxxxxx

[linksy]

I too have to use limited meds due to having bad acid problems due to years of using anti inflammatories and ibuprofen and I have really suffered with the stress of being took off esa and having to appeal it's a shame the way things have been done to get people off esa and dla. for me i wish they had spent the money on getting people well enough to have a decent quality of life. I have now discovered my medical notes and i must be the most mismanaged case of being fobbed off for 20 years of given tablet after tablet to try and help with pain. I get my head around things by knowing it is not a personal attack on me it is just the system moving the goal posts. I spent years not visiting the dr cos i couldn't actually get out of bed for fatigue. Now i am at the drs insisting they refer me to a fibro specialist and pain management so it has made me stand up and get the treatment i need so maybe it has made me stronger after the initial panic of no money. I now use magnets to help with pain and i could not manage without deep relief pain gel which i use every day. if there was a magic tablet that took my pain away i would take it but i have not yet found a tablet that doesnt irritate my stomach i get nausea every day so can't face taking them in the morning. when i do take tablets i tend to manage for a few days but then my stomach issues start again. catch 22 take care x

[hobbbllliiingaround in reply to linksy]

Hi glad you have stood up and asked for the pain management it does sometimes come up with things that help. Do you get omeperazole off the doctor for your acid stomach, I ended up with a rupture & spewing blood due to over use of anti-inflammatory /aspirin based meds-Gastritis it sounds very much like you are similar. Before the eruption of blood I had started getting flushes of heat to my face & my stomach felt pretty hard and almost full before I had eaten

[linksy in reply to hobbbllliiingaround]

I have taken omperazole before for about six months my acid was so bad i felt nauseous all the time and retching . Have noticed lately it seems to be happening again i will get some next time i go to see dr thanks for the reminder. sorry you had such an awful experience with acid. the chemist couldn't understand why i was so bad but now i know it was the medication i was taking for pain causing problems.

[Ozzygirl64]

I am on limited meds for other things but nothing prescribed for the actual pain bar amitrips. Thisis my second go at these as they stopped working some time ago. I feel as though I am on a hiding to nothing. So I take paracetamol from time to time xxxxx

[hobbbllliiingaround in reply to Ozzygirl64]

Hi Ozzygirl64

I was on hardly any meds but paracetamol and the occasional Amyt until all this with Atos they started saying that my pain must be minimal - when I tried to explain how badly I reacted they just ignored me. This year I have tried allsorts again (bad idea) just as I was about to go back to struggling without I decided to give one last go on the pain patches. They seem to be better than the paracetamol......& no side effects so I am feeling a little better than usual and The last couple of nights have managed shut eye a little better than for a few months...............Bupanoraphine (spell?) just hope it lasts ....xxxxx

[Ozzygirl64 in reply to hobbbllliiingaround]

I tried the Butrans patches but they would not stay on my skin. I could not even get nicotine patches to stick. Even my nurse tried but stick they would not. I had the same problem with ATOS and I tried to explain about the stomach and duodenal ulcers etc, and was ignored. They assume if you are not up to your eyeballs in pain meds then you must not be in pain. I would kill to be able to take pain meds. But I am glad you are okay with the patches, gives us all hope that there is something out there to help people. xxxxx