Pain, NHS and depression

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Pain, NHS and depression

Postby Libby Clark » Tue Aug 19, 2014 11:39 pm

Everyone tells me I cope well with my FM and chronic Degenerative Disc Disease, if only they knew.

I try so hard to carry on and be 'normal' whatever that is, I smile and try to keep up with things but it's all getting too hard :(

My life has changed so much over the last few years and my circle seems to be getting ever smaller.

The NHS in their wisdom have pushed my cordal steroid injections from6 monthly to 8 monthly, without asking, without consulting and seeing how I am coping. Just to save a little more money, well I am about at the end of my tether.
I am going in on 11th September but feel so low at the minute, I take loads of meds and Oramorph but they just dont ease off the pain enough, my hands have become much more clumsy and shake quite a lot, my grip is rubbish so I am dropping things and I hurt, not a little bit but hurt, horrible nagging pain that just doesn't stop.

An hour ago I took 3 Ametryptalene, 2 Paracetamol 2 Tramadol and a big swig 10 mls from my Oramorph.

I am sat up in bed waiting for the pain to calm down enough so I can sleep, my right arm aches like toothache from my shoulder to my hand, my lower back has it's usual nagging ache and spasm of pain as if I am being stabbed and my legs are doing the Irish jig all on their own, my diaphragm spasm and makes me jump and catch my breath and now once again I need to pee, my third one in less than an hour and each time it leaves me struggling to bet out of bed and get to the bathroom on my own without falling over again.

My husband is good but is working hard to keep us going and as much as I need the help I want to be Independent and not wake him up every time, he needs his sleep too.

When I visit my GP I am lucky if I see the same one twice and none of them ask how I am coping or suggest any help or support, I mentioned it once and the doctor suggested I ask my daughters for help! I do and they do but they both have young families and husbands who need them home, not babysitting me!

I need a wheelchair but it would have to electric as there is no way I could wheel myself, and my GP suggests I search online and buy one !!! Oh yes of course we have that sort of money spare!!

If I mention the depression I am told what do you expect with all you have going on???! Yes I am on anti depressants and yes they do help but they are not a cure all. So tired, so fed up just no idea what to do next.

Sick of hearing myself puff and grunt as I try to stand and then click and crack as I move, I am 54 not 94.

Oh well sorry ladies for going on but I lay here with all of it going round and round in my head and just needed to let off steam.

Thanks for being here xxxxx
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Re: Pain, NHS and depression

Postby elainejennings » Wed Aug 20, 2014 12:54 am

Same here. Besides copd i was told i had fibro and that was it. I had to keep on at the doc to get sent to the pain clinic which was just a flipping waste of my time to be honest.
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Re: Pain, NHS and depression

Postby pj1943 » Wed Aug 20, 2014 1:47 am

Many of us can empathise with you and what's going on. Life with fibro is awful and not many doctors are helpful or have any real insight to our problems. They don't tend to be sympathetic either. I can understand how you feel I've had fibro about 35 years getting gradually worse :( There are odd times when it eases so please hang in there, you are not alone and definitely use the forum to sound off because we all understand.

Sending love and hope x
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Re: Pain, NHS and depression

Postby Roger Rabbit » Wed Aug 20, 2014 7:09 am

so sorry to hear how you are feeling, your life sounds just like mine so please do not feel alone. I understand about all that you posted, every line told my story too. I am glad you shared, I hope that it made you feel a little better. My life has changed dramatically too and am now in a wheelchair when we go out, the pain is too much to walk. I am 45, female. Oh, and I know that smile, it's used every day, know matter how you are feeling! Thinking of you today, hope you have a better day. P.S. Remember to smile!!
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Re: Pain, NHS and depression

Postby anonymouse » Wed Aug 20, 2014 8:08 am

Sorry to hear about your problems, thought I would reply as I have similar issues. I'm currently on Amitryptiline, Duloxetine, Gabapentin, Oramorph, BuTrans Patches & ibroprofen Gell. I've never found any relief on paracetamol to Tramadol & relief only started with Oramorph. I also have Fibro & Disc disease, having the Irish Jig going on is a great way to put that phenomenon. I was at Physio the other day and he just asked me to bend my leg while I sat up, well it was all over the place jumping around, I just couldn't control it!

The main reason I wanted to reply is just to urge caution with the Oramporph under the Nhs is soooo badly managed, when I was taking over 100mg a day it broke my patuitary gland and now my body doesn't produce testosterone properly, I've been on replacement therapy for over a year and I have not responded to it at all. I've been fighting a few years now to reduce my Oramorph, I've only managed a 50% reduction and the worst thing is there is NOTHING they can do to help morphine withdrawral symptoms while your reducing, its horrible. This is after several pain consultants and specialist pharmacists etc. I'm no so angry with them over it, I was treating breakthrough pain with Oramporph and didn't want to use it to treat chronic pain, but I relented after they persuaded me to do so, I wish I stuck to my guns but I didn't realise how much I knew about pain Managment and how little they knew. Fibromyalgia is almost the leas of my concerns now, because of course when your hormones go wrong its like Fibromyalgia anyway!

The NHS need to have a multidisciplinary approach to chronic pain patients like us with problems in several specialities of medicine. They are just throwing money at us with no plan or stratergy and its just making us worse. I really hope you find something that helps. I also need an electric wheelchair but I've got no chance of affording one, let alone a vehicle to allow me to get out and about. I'm 31 and male and broken. Just watch that morphine though, its the only thing that will help with your pain but it will eat you from the inside out, the joke is you can get heroin on the NHS but not Canabis which arguably would help more, but I dare not try it because its illegal. So its a longer life in constant pain or morphine to help my pain but will kill me in a few years time......... Decisions decisions!
Fibro, Chronic Pain, Insomnia, Psoriasis, Migraines, Light & Hyper Sensitivity & Joint Subluxation but apart from that I am perfectly healthy & battling for ESA & DLA. - Twitter: my_fibromyalgia - Facebook: myfibromyalgia
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Re: Pain, NHS and depression

Postby migrembe » Wed Aug 20, 2014 10:02 am

I am going to say something controversial, but then i normally do as i have a big gob anyway - you are on all those medications and they are not working and the shaking could be being caused by the oromorph, which is highly addictive and the more you have the more you need. But you have tried all that and it's not working and is probably making you more ill than you would be anyway. As for anti-depressants recently scientific double blind studies have proved that 75% of the time they do not work but make you feel worse.

The only medication i am now on is cocodamol and the occasional naproxen or ibuprofen and am in pain and do i have fatigue yes of course i do, but it way no worse than when i was on all the other rubbish, which was actually destroying my stomach lining and causing me to go into kidney failure.

There are days i spend in bed and nights i do not sleep but now i know its the fibro and nothing else. The medications are killing you. And i am sorry that you feel so bad but your Drs cannot cure you and do not know how to treat your symptoms so get wise and learn how to do it yourself.
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Re: Pain, NHS and depression

Postby rich44 » Wed Aug 20, 2014 11:55 am

I was like that with cocodamol they didn't really help but took them like sweeties because it's better than doing nothing right?

I'm just taking nefopam at the moment and paracetamol and duloxetine I've got to give it a chance it's only been a few days on duloxetine.

Anti-depressants never make me "feel" any better happier whatever but my wife knows when I'm on them says makes me much less snappy and aggravating.

The flaw in those trials you mention is they didn't repeat the study with different drugs on the same patients, count up the anti-depressants there are dozens of them, one may work on one person not another so the double blind trial would only be conclusive if there were little to no clinical benefit to the same people across the whole range of drugs.

That's not to say the figures in that study aren't interesting but antidepressants and other drugs in their weight have saved lives.
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Re: Pain, NHS and depression

Postby Tally1068 » Wed Aug 20, 2014 12:07 pm

Just to add my sympathies to your post. I could have written it myself. but that doesn't help at all does it?

I'm just posting to empathise and say I hope this is a flare up that will flare down soon. :-? Life when you are trying to get away from so much pain is terrible.

I cant take oramorph, it's the only med I reacted to, but the best I ever had for pain. It's so easy for the doctors to judge. I just want them to come and live an hour in my body. :evil:

Sending you all the best. xx
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Re: Pain, NHS and depression

Postby Susan Stokes » Wed Aug 20, 2014 12:33 pm

I feel so sad for you all as, at the moment, I'm coping quite well. My house is a proper tip, the garden is wild, the dog doesn't get walked. I know if I tried to tackle this I would be back to square 1 so I try to close my eyes to it all and bury my nose in a book. I want to hang on to this brief spell of coping for as long as I can. Sending healing love and gentle hugs out to you all.
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Re: Pain, NHS and depression

Postby FluppyPuffy » Wed Aug 20, 2014 3:12 pm

Sorry to hear the blackness is swirling so close to you at the moment Libby :grouphug: :grouphug: :grouphug: :grouphug: Having had such clouds engulf me over the years and push me right to the edge of things, I have a little idea of what it's doing to you at the moment, as do others on here. Hopefully getting that steam out of your head and sharing it with us is the first step towards things starting to become a little lighter and brighter for you :fingerscrossed: :fingerscrossed: :fingerscrossed:

Finding that elusive cocktail of things that help make the difference we're looking for is like searching for The Holy Grail. There are so many things to try in numerous dosages/amounts in what seems like an infinitesimal number of combinations. Unfortunately at the moment there isn't a wonder med, or mix of meds that can get us to exactly where we want/would like to be, but we have to keep going, plugging away and trying different things to see if we can find some additional easing and comfort to how we feel. Are you due for a review of your current cocktail soon???

Even if you're not, going to see your GP about how you are at the moment may be something to consider. Sometimes a little twiddling and tweaking of things can make a difference. Ideas such as staggering daily dosages can help. I have some that I do this with, and the difference it has made, altho quite small initially, has rippled out and made a few other things a tad more manageable too. With one of them, the guideline dosage is 2 tablets 3x daily, but when I tried this, the breakthru pain was terrible. So after a word with my GP I split it into 1 tzblet 4x daily, with the other 2 being taken thru the day when I needed additional help. This could be first thing in the morning after a duff night, or during the afternoon when I'm the one being walked by the doglet. It just takes the edges off how I feel, but that extra boost means I'm able to function that little bit better.

With us all being so different with FM and how we respond to meds, sometimes something that is supposed to be more effective turns out to be the complete opposite. In some cases, swapping back to something you were on previously can work better with the other ingredients you currently have. It's another possibility to discuss with your GP to see if it might be suitable for you to try.

I've been guilty of hiding how I really feel at times, giving the impression that I'm bobbling along OK with what is being thrown at me, but in reality that cloud and the abyss are getting bigger, wider and much more intense each day. Sometimes the best thing you can do is let the coping mask drop and let others see how things genuinely are for you so you can get the help you really do need.

Have you tried asking for an appt with a specific GP by name??? If not, maybe give it a try and see what happens. Having some continuity in your care may be of help, as well as saving you from having to go thru everything each time you see a different GP.

Whilst your circle may be shrinking physically, from a cyber viewpoint, it is expanding as you have so many on here who understand what this is doing to you and have gone thru the blackness and come out of the other side where, altho not what you might describe as being perfect, things are definitely lighter and brighter for them.
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Re: Pain, NHS and depression

Postby migrembe » Wed Aug 20, 2014 7:17 pm

It's the end of another day and today i went to visit my second cousin May. It took two buses to get there. We talked about family history and she showed me photos of my grandmother and great grandparents and great aunts and uncles and they were amazing. Then as my bus from my aunts arrived into the bus station a friend text and said he had had a stressful day and would i like to go out for tea and a lift home. My body was screaming NO NO NO but my mind was saying YES and in the end he picked me up in his car from the station took me out for tea and then brought me home. It is now 7pm, I feel like a rabid dog has picked me up and shaken me, i am in pain, i ache and my fatigue is high and i am ready for bed. In fact i am now in bed, but what a wonderful day i had.

When i was on anti-depressants i was too afraid to go out my door, i would close my bedroom door and the curtains in case anyone was watching me. I would wake in the night fighting some unknown, not there assailant. I was frightened, i was paranoid, i had panic attacks, i was withdrawn, i had nightmares and night terrors and they did nothing for my mood and i took several different ones over the years.

Now i meditate every day. I sleep peacefully most nights and i try not to do too much on most days but to stay in bed all day every day will eventually kill you.

If you want to know how anti-depressants work read Doctoring the Mind by richard bentall, if you want to know about psychosis Oliver sacks in a good place to start. However get knowledgeable and then get wisdom.

I asked the question on another part of the forum concerning what pills people were taking and if they honestly helped them to live a normal life and not one person said that they did.

This life is awful. Being ill, being disabled blows the mind but letting go of your sanity is the last thing you should do.

Whatever you decide don't give up the fight to live. :grouphug:
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Re: Pain, NHS and depression

Postby zappa20 » Thu Aug 21, 2014 12:13 am

Mitre be I do tend to agree with your comment. The bulk of medications prescribed to people with Fibro I feel cause more problems then they resolve.

Doctors tend to issue prescriptions for numerous painkillers as well as anti depressants far too easily I feel. It would in my opinion be much better if at the first hint of Fibro being behind the many symptoms patients describe they were referred to specialist Fibro clinics where they could learn how lack of sleep or constantly interrupted sleep will eventually create havoc with your nerve endings. That reducing activities due to pain felt will stiffen and weaken muscles etc. and how easily it can descend into a downward spiral.

The programme I sometimes mention on here which included a young woman who like me who managed to recover from Fibro was about the over prescription of pain killers etc for chronic pain. She was just one of the people involved in the programme. Basically she was sent to a private residential pain clinic where people learn how to deal with chronic pain in alternative and prescription free ways. The point of the programme was that it worked out less expensive in the longer term and the patients all managedf to improved their life conditions as a result and reduce their reliance on prescription drugs.

Sadly it seems our NHS is too stuck in the Middle Ages to take the leap of faith
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Re: Pain, NHS and depression

Postby migrembe » Thu Aug 21, 2014 8:46 pm

Zappa

I am not sure if it's the Dr's in the NHS that are in the dark ages or the fact that people expect to be given pills and do not stop nagging their Dr until they get some. Most of us want a quick fix and not many people want to slow down and listen to what their bodies are telling them, because by doing so we would then had to do things differently.

I do not believe there is a cure for Fibro however i do believe that people can live in such a way that minimises the symptoms and instead of having many bad days and just occasional good day we can turn it on it's head and it the other way round. We need to understand how we got to where we are not just physically but also mentally, emotionally and for some, me included Spiritually too. And of course we need the desire to want to change.

Pills can help in the grieving part of the disability but they are not good for the long haul. Beverley
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Re: Pain, NHS and depression

Postby dazzleship » Sat Aug 23, 2014 8:54 pm

first of all - Libby I'm sorry I don't know much to say that will help you but I just wanted to give you this :hugs: I hope it will help a little bit
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Re: Pain, NHS and depression

Postby Libby Clark » Mon Aug 25, 2014 10:07 am

Thank you so much everyone, for the positive words, ideas of what to do and the hugs.

I am still struggling as this week my hands and arms have decided to show off and so I have immense pain in my shoulders, elbows and wrists and my fingers keep going tingly, I know it's just a mixture of my Degenerative Disc Disease and my FM.

At least I now have a date for my next steroidal cordal injection on 11th September, so a small light is shining at the end of the tunnel. It does give me some pain relief for a couple of months.

Have a good day everyone xxxxx
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