Family worried

mumof22018

My family are so worried lately about me due to the cocktail of meds im on everyday there are very strong oain killers max dose everyday plus anixety drugs depression drugs among other things total to around 26 i use a pill organiser now as i really kept forgetting due to chronic pain im in all time and was afraid of overdosing by accident 
My family are so worried about the long term damage it could cause to liver and kidneys one of the sode affwcts is severe short twrm memory loss bjt this could also be fibro fog aswell as i sometimes cant wven get words out i need to say
I have numerous conditions so i do need the meds and wen im having a flare up even they dont help im literlally bed bound for days 
I had to get mum home from work last week i was that bad i took a really bad flare up for around 8 days was tjat bad i took 2 oanic atracks and muscle spasms then they locked if that's what u would call it 
I keep telling them tjey have seen me if mum or i forget to order script and i miss 1 day how bad i am i tale severe tremors chronic migraine and pain right into my toes i need them as the doc has tried other ones cut them down nothing has worked 
Im on 3 x 300 mg gabapentin  3 times a day
200mg tramadol 2 times a day 
30/500  cocodamol 2 tabs 4 times a day
Propropanol 40 mg 2 times a day 
Seratide  i think 50 mg once a day
Then vesicare for bladder 
Meberavine 3 times a day for ibs 
Omperozole 20mg 2 times a day for tummy 
Zopilcone to sleep 3.75mg at night 
I cant take anti imfammitories they had me on baproxen but it kills me so they gave me the gel to rub on 
Plus i have chronic psorisis so i cant get it cleared even with enstilar as wen i am ill it flares 
Ibs again flares up bad wen fibro flares can go either way last time was that bad he thlught id chrons i could only get tomato juice and water into me for 3 weeks so obviously i lost a load of weight now ive gained that again with gettn addicred to chocolate lol dnt no wat happened i neber was like that now have to hv dairy milk fruit and nut ??? so of choc 4 lent to curb this as i have a belly now but look a bit healthier 
As for sleep i go from not sleeping more than hour or 2 a night for couple weeks to then sleeping for 20 hours straight i cant get a handle on this been like that for a year and none of thr meds he gives me makes a diff aoart from zoplicone i get maybe 4 to 5 at most which is fine but it doesnt work every night 
I can see why they are worried as it is alot but i have said to them it thrm or if i cut down then in severe pain all day everyday least with these they work im not in chonic pain all day every day it would be sections of the day and 1 day a week i might get 8 hours in a row where the pain is that low i can actually function amd think and i be happy i no it prob will do something over time but atm i think its worth the risk  as i have suffered this for 14 months am losing my job have lost my friends well most of them i have 2 that r there for me and i feel like im a burden most days but the snipets i get to beimg back to me just for a while is so good !! 

Pippa_Alumni

Hi @mumof22018, thank you for sharing this with us. I'm so sorry to hear about all you're coping with at the moment, and that you're feeling worried.

Does your GP know you're having trouble remembering when to take your medication? They're best placed to discuss any of your concerns, and also whether there's anything else that could be done to support you. I was going to suggest a pill organiser to help you, but you beat me to it! 

I hope that some of our members will be able to share their thoughts too, but do speak to a GP or a medical professional involved in your care. It sounds as though you and your family could do with some extra support at the moment and I hope you can find it. Please do keep us updated too!

EmmaB

Dear @mumof22018

I'm not surprised your family are worried, that is a lot of HEAVY medication and it doesn't sound like it's helping you anyway...  

Two things spring to mind - did you ever see the documentaries "The Doctor Who Gave Up Drugs" - your family and you might be really interested to watch these.  The series is about how the presenter [who is a doctor] helped people through means other than medication.  In those cases, similar to your own case, the patients were on meds which weren't actually helping much anyway.

Episode 1:  https://www.youtube.com/watch?v=g_ggnhpGvvA
Episode 2: https://www.youtube.com/watch?v=Wjn4f8YHhfU  [features a woman with fibro]

[NB don't just stop your meds!  If you do want to seriously address this you are going to have to find a doctor that will commit to helping you, not a lazy doctor who just wants to write you off and leave you on meds...].

The second thing that springs to mind is that in my experience people on the sort of cocktail of drugs that you are on [and you also mention fibro] have had a difficult/traumatic background which has not been addressed ie the doctors are trying [and failing] to treat the symptoms and not the root cause. 

There is specialist help out there eg Somatic Therapy, EMDR, www.pods-online.org.uk , http://www.proactive-neurosomatic-therapy.com/  [the last organisation is run by someone who recovered from CFS after having had it for 25 YEARS...]. 

If you go through the NHS the wait is long and you have to push for it, really push...  If you get PIP then the idea is that that money can be used to fund private therapy.  As you experience a lot of pain I would think that somatic therapy might be of interest to you.  The bottom line is that 'the body keeps the score' [the title of a very good book if you are interested in knowing more...] and your emotional experience is expressed through your body, without addressing that you will only scrape the surface of the problem.

If you haven't experienced any past difficulties/trauma then the somatic approach would still be relevant.

What's great is that you have the support of your family and I hope they can help you to find a way out of an existence of pill popping and pain, to one where you can start to live your life again?  The path to recovery won't be easy but there are things you can do to help you along that path.

I hope this is helpful... I get very frustrated about how people are being left on meds that clearly aren't helping them...

Emma

mumof22018

Thank you so much for your replies they r so helpful and gove me hope 
Yes the waots in nhs r long i paid to see rhumatologist myself due to wait list so i can take his findings to my njs rhumatologist on 15th this month 
I feel exactly what u say just givong me more and more pills and yes they r so strong how i manage to actually function everyday os beyond me but i do yes i spoke about my mental health with him and his answer was more pills as i had what i would call a beakdown sat week ago and was so dispondant for 3 days so he gave me the seratide i rhink it is and it has helped but i think with work having occupational health assesment then pip assesment knowimg i have a wca assesment plus dealing with my work coach each week although she is brill as i just cried through myy last phone call i think i meed more help rather than pills as u say they arent working my work doc was in shock at state of me he said i though i was getting a 36 yr old that just needed a bot of help back to work he said he didnt realise to the extent i was ill and apologiesed for me having to come out of house he was lovley told me black and white i need work sorted and me left so i can concentrate on getting to a point i can manage life i just think with everything my bidy and mind couldnt cope anymore i felt like my mind broke or something so wen the lady for pip came it was only couple days later and i was a mess i broke down with her i literally couldnt stop i explaimed everything and she saod no wonder i was way i was wen she seen me im a private person so this here is great as i dnt see ppl amd find easier to talk so me breaking down to her was something i wouldnt norm do and she seen the vunerable sode of me which i didnt want to show but she was very understanding and patient bit didnt make a fuss the thing with this fibro is my hands they r swollen all time and in pain no matter what i take of i moss gababpentin i physically cannot move at all and my muscles sieze so much my neck and jaw even goes and i have to just wait it out the pain i cannot describe i went through 30 hrs of labpur and it was nothing to this and i dnt no if it is jist fibro with the other symptoms i get i have nhs app 15th so i will mention to him and tell him that i really need help as nothing is working but could it be something with the fibro as i went in a yr from working normal goimg to gym no traumas to a sore shoulder thrn spine and head ti this with blackouts frquently amd falling as i lose feeling in legs all time and arms so i have fell down stairs !! So i go on bum lol 
I have started this week with oostive out look tey to find 1 thing everyday to smile and makes me happy and i write it down i am making ans for things to do wen i have a better day as they dnt happen very often
Im taking mum with me to next app to let her see and hear what im goimg through and why i takes these tabs but will look into alternate therapys and yes if pip is successful i will be uaimg this to oay for anything that can help even if its a orivate yoga teacher to c if that would help as i miss exercise i loved being fot doing wieghts and habing a toned body it hwlped keeo my mind healthy so im working to keeo my mind in the right track i never want to get that low again as its scared me and i want to habe good days to spend with my 11 yr old even if its just a shoppn trip to spoil him or go to one of his matches but im ggoimg to watch these videos thanks all xx

mumof22018

EmmaB said:

Dear @mumof22018

I'm not surprised your family are worried, that is a lot of HEAVY medication and it doesn't sound like it's helping you anyway...  

Two things spring to mind - did you ever see the documentaries "The Doctor Who Gave Up Drugs" - your family and you might be really interested to watch these.  The series is about how the presenter [who is a doctor] helped people through means other than medication.  In those cases, similar to your own case, the patients were on meds which weren't actually helping much anyway.

Episode 1:  https://www.youtube.com/watch?v=g_ggnhpGvvA
Episode 2: https://www.youtube.com/watch?v=Wjn4f8YHhfU  [features a woman with fibro]

[NB don't just stop your meds!  If you do want to seriously address this you are going to have to find a doctor that will commit to helping you, not a lazy doctor who just wants to write you off and leave you on meds...].

The second thing that springs to mind is that in my experience people on the sort of cocktail of drugs that you are on [and you also mention fibro] have had a difficult/traumatic background which has not been addressed ie the doctors are trying [and failing] to treat the symptoms and not the root cause. 

There is specialist help out there eg Somatic Therapy, EMDR, www.pods-online.org.uk , http://www.proactive-neurosomatic-therapy.com/  [the last organisation is run by someone who recovered from CFS after having had it for 25 YEARS...]. 

If you go through the NHS the wait is long and you have to push for it, really push...  If you get PIP then the idea is that that money can be used to fund private therapy.  As you experience a lot of pain I would think that somatic therapy might be of interest to you.  The bottom line is that 'the body keeps the score' [the title of a very good book if you are interested in knowing more...] and your emotional experience is expressed through your body, without addressing that you will only scrape the surface of the problem.

If you haven't experienced any past difficulties/trauma then the somatic approach would still be relevant.

What's great is that you have the support of your family and I hope they can help you to find a way out of an existence of pill popping and pain, to one where you can start to live your life again?  The path to recovery won't be easy but there are things you can do to help you along that path.

I hope this is helpful... I get very frustrated about how people are being left on meds that clearly aren't helping them...

Emma

This is so intresting i am going to email them and see if they have clinics here in NI it sounds so intresting and this is sort of thing i love i am really intrested in how the brain works understanding our emotions what a harmful environment can do i have worked as a special needs assistant in secondary for 10 yrs and loved it but found noise and light triggered my blackouts and made my oain worse ie if i had a stressful day in work this made me so much worse so it would be intresting to see what shw could find from my background !! Thx for the info i will defo be using it i want to find things that will help me recover fulky or get me to a stage i can manage life with as little medication as possible and get back to work as not only did i love my job but the aocial aspect of it aswell and my independemce x

EmmaB

I'll be rooting for you @mumof22018!  I think it's useful to understand how the brain works and how it interacts with the body.  I hope you can find some good quality, effective support, so you can get your life back and enjoy time with your young son - that sounds like a strong motivating factor in itself [I have 2 boys - 12 and 14 now!].

All the best.

Emma

mumof22018

EmmaB said:

I'll be rooting for you @mumof22018!  I think it's useful to understand how the brain works and how it interacts with the body.  I hope you can find some good quality, effective support, so you can get your life back and enjoy time with your young son - that sounds like a strong motivating factor in itself [I have 2 boys - 12 and 14 now!].

All the best.

Emma

Yes it is as he has helped me so much and its hard  getting used to fact u meed other ppls help but i wont let it beat me now i know what it is i may be out of work for the next few years but it gives me the time to focus on me and my son and  make our lives better and try to adapt to the mew life i have he is so good he helps so much and he knows i appreciate it so much niw its just figuring out what i can and cant do my limits and wen to let other ppl help im goimg to research it aswell as my hands r the worst not being able to close my hamds around anything eg a fork it hirts so much amd my palms r so sensitive i mean hot to touch and painful so wvwn holding phone is sore i need to no if this is fibro because hamds r swollen and doc now blames everything on it but would there be swelling in joints and hamds roaring red all time so yes reseach as knowledge is power !!!!???

EmmaB

Hi @mumof22018

I'm just reading a really good book which might also be of interest to you - it really clearly explains all about pain and how mindfulness can help, I really recommend it:

Mindfulness for Health:  A practical guide to relieving pain, reducing stress and restoring wellbeing
by Vidyamala Burch and Danny Penman Foreword by Professor Mark Williams

One of the authors also set up Breathworks and they offer an online mindfulness for health course:

www.breathworks-mindfulness.org.uk/online-courses

You may feel like dismissing this idea but there is SO much evidence that mindfulness helps with pain, depression, chronic fatigue etc etc etc!  

It's not a quick fix and it takes practice but as the book explains it can drastically reduce the experience of pain and the emotions connected to it - what's not to love about that!?

I hope that is of interest.

Emma