Arghhhhhhhhhhhhh Pain Team, what was the point

[Carolinee71]

As you can guess I went along to see the Pain Team. I got to see my consultant , not a training doctor but things did not go well at all.

I wanted to get my point across about taking the Lyrica ( Pregabalin ) I had been taking 75 mg night and morning but my GP wanted me to increase the dose to 300mg a day spread out in a way that suits me.

Since Christmas I have got it up to 150mg at night and 75 mg in the morning but the side effects have been hell.

It has given me double vision on and off during the day,

My mind has completely gone, I have no memory left at all. I can't go out on my own as I am completely lost by the end of my road, don't know where I would be going, how to get any where or how to get home. So I am trapped in the house for most of the time. The Lyrica also keeps sending me to sleep, but not a night but during the day. It's not just that I dose, I am un wake-able . And this can happen several times aday. I can fall asleep sitting on a stool with no back and stay asleep for up to four hours at a go. I fell a sleep leaning on a wall while putting bits in the bin.

I tried to tell the consultant the above and all I got back, you have to stay on them, and yes increase the dose up to 300 mg aday. She said that I should know its a balancing act between side effects and pain. But I can't stay awake, when I wake I can't remember where my kids are, have I feed them, I have no idea what's going on and I am in tears

She has said she is going to do trigger point injections in my back.

Has anyone else had these, do they work, do they hurt!

Lastly has anyone got over the horrible side effects of lycria . I just want to stop taking them and go back to taking the Oramorph. For pain . I also take MST 40 mg twice a day

Sorry if I have been rambling a bit, but thanks to lycria this posts makes no sense

I can not keep going like this, I know it's important but I have no life at all

Please can someone please help me, I really don't know what to do, I also suffer from really bad depression

Caroline

[jillylin]

Very gentle hugs Caroline. That sounds terrible and I am really sorry the Consultant isn't listening to you. Is it worth going to see your GP to see if he/she can communicate with the Consultant on your behalf? I hope someone, somewhere can help you. I believe you are entitled to ask for a second opinion so maybe that is the way you need to go.

Hope someone here can give you better advice .

Hugs

Jillyxx

[Carolinee71 in reply to jillylin]

Thank you so much for answering, I think you are right in getting my GP to write again to the consultant, but with my questions and see if we can get her to listen, and maybe even answer some points

Thanks again

Soft ((((( hugs )))))

Caroline

[TheAuthor]

Hi Carolinee71

I am so sorry to read of your current situation and I sincerely hope that you can find some resolution. I was wondering if before your pregabalin if you ever took gabapention? The two drugs are pretty similar but from the leaflets the latter has less side-effects. I was wondering if your GP was a sympathetic listening type of doctor? If so, maybe you could talk to your GP about an alternative medication?

You take care and I sincerely hope that you can find some resolution

Ken x

[Carolinee71 in reply to TheAuthor]

Hi thank you for the reply, I was put on Pregabalin by the hospital but my GP has always told me how good a drug it is and how once y get to this magic 300 mg a day the pain should get a lot better. Last time I was in to see him I had my eldest daughter (20yrs) with me ( it's a long story) and he did ask about the sleepiness but between them they seem to see it as funny and I was told at that point to start increasing it.

I think I will ask about this gabapention. It has got to be worth a try. Do you know if I can just stop taking the Pregabalin ?

At the moment I really hate this condition , it has taken away my life, I used to have a brain, and a really good memory and I used to work full time. I ran a bookies and worked 50 hours a week and I loved it. My life was good, I had money and could pay my own way with my kids. Now look at me, I can't even stay awake to do anything. I know a lot of this isn't helped by the depression but I only have depression now due to how bad my life has become

Sorry for the rant, you have been very kind. I will be seeing my GP next week and I will ask him about changing over

Many thanks and soft (((((hugs)))))

[TheAuthor in reply to Carolinee71]

Hi Carolinee71

I am so sorry that this illness has taken so much from you and I sincerely hope that it can be controlled and hopefully you will get your life back. I understand exactly what you mean as up til a few years ago I had a wonderful career, I had been on TV and radio and featured in newspapers etc but not anymore. I simply cannot function in the way that I used to.

I do not know if you can suddenly stop pregabalin. I think think that is one of those things that you will have do discuss with your doctor. Good luck with the meds.

Take care

Ken x

[jillylin]

Petal, never worry about offloading here. You are with people who really understand. I have depression as well, seems to go with Fibromyalgia. Mine developed after Fibro started to alter my life. I had a job I adored and was forced to stop. Things will get better, once they sort out your medications, etc. Hopefully your GP will be able to really help you.

Gentle hugs

Jillyxx

[Hidden]

This has made me so sad to read you must get a second opinion on this, the sleepiness isn't sustainable! I studied for years to be a barrister, and I did it until this stupid condition coupled with depression knocked me off my feet and turned me into a brainless lump. You are not alone, don't ever, ever feel that way (also bear in mind that with the insomnia lots of us are on here at night if you are struggling too). Now, back to the sleepiness, it could be the lyrica, I couldn't tolerate the stuff at all, and that needs sorting with a second opinion if necessary. However, it could also simply be chronic fatigue - and I don't use that term lightly, I mean the real deal. It happened to me after a particularly nasty flare and virus. I fell asleep at work (in court), behind the wheel (crashed), while cooking my dinner (flames were involved and not even the smoke alarm woke me up), and in the end I was, like you, pretty scared. They looked at sleep apnoea, narcolepsy etc as well as medication as being possible reasons for why I was suddenly falling asleep and couldn't be roused, I was hooked up to monitors and all sorts, but nothing. All they discovered was the night time insomnia was not exaggerated, coz the sleep machine told them I'd had none for a week and the conclusion was crushing fatigue. Anyway, see, I'm rambling with my silly brain now, what I'm trying to say is get a second opinion, it might well be that it's the lyrica, it might be sheer exhaustion, but it's best to get it checked out. Is it possible to have someone be with you so that you aren't freaking yourself out after a sleepy spell? I had to have my dad move in with me until it settled. My depression and anxiety is pretty bad so I do understand how you are feeling, it's overwhelming, I just wouldn't tamper with the lyrica because it is rx as an anti depressant too and not to be discontinued without guidance. As I say neither pregabalin or gabapentin agreed with me so I take duloxetine (cymbalta) which works in a similar way with nerve pain and treats depression xxxx

[Deebee17]

You poor thing. I totally understand about the sleepiness. I have a habit of falling asleep at odd times as well. It's a bit tricky (embarrassing) being in a meeting at work and suddenly jerking awake, looking round to see if anyone noticed, then trying to remember what the meeting was about etc etc. I have fibro but I also have chronic sleep apnoea, treated with cpap. I see a sleep clinician regularly and have recently had a sleep study done. Is it worth asking for a referral to a sleep clinic perhaps?

I take 300mg Pregabalin a day (150mg in the morning and 150mg in the evening), I also take 40mg Amitriptyiline and Tramadol every evening. That mix seems to work at the moment but it has taken a while to get here, hopefully it won't need to change again too soon.

Hang in there and don't forget, this forum is the place to come for support, comfort and answers from people who are going through similar things.

Gentle hugs xx

[nedd]

Just popping by to wish you well, and to say that I hope you begin to get a handle on things soon.

[glochessum]

I really feel for you. I started low on Pregabalin & my dr said to increase it to 150 at night which is fine & 100 in the morning, not good. It made me useless in the morning sooooo tired, couldn't function at all until midday.

I dropped the morning dose down to 50 & that worked but I'm still in a lot of pain & have to take Tramadol topped up with paracetamol throughout the day.

[Theresalou]

Hi Caroline . I can totally sympathise with you . This is how I felt on lyricia too . I was totally drugged up unable to do anything and actually in a complete dazed state 24/7. I have to young boys aged 7 & 8 and need to be able to function to some degree . My husbands great and does so much but still there is so much to try and do. I work part time too 16 hrs a week - but have had 10 -11 months off sick on and off during the last 3 years . I struggle to work on a daily basis . The pain management clinic I have found useless to be honest . My consultant is rude not sympathetic and so un caring . Just tells me to get on with it . He's never offered me any pain relief at all . I'm so lucky my last Gp left around 1.5 yrs ago and my new go is more understanding and put me on 60mg mst morphine twice a day plus oramoph for breakthrough pain. I take amitriplyline for my migraines at night . Citalopram for depression and other things for low calcium and I can't absorb Vit b12 so I injections 12 weekly for that . Neurologist out me on 30mg of baclofen for spasticity ,spasms & serve stiffness as my body would completely lock up when sleeping . It was pure agony .

As for the trigger point injections I've not had them but I've has facet joint injections for the pain in my shoulders and neck . They helped for about 6 months the first time I had them . The second time only helped for around 2 weeks . Its a constant battle I know trying to get your medications to be ok to a point you can function but also be in as Least pain as possible . Lyricia does help with depression as well . Don't let your consultant it Gp bully you into taking the lyricia or up the dose . You are already finding out you can't function at your current dose let alone upping it . All I can suggest that you fight fight fight . It's draining I know as that's what I've had to do for the last 3 years . Its a constant battle . I really hope you can get some relief from the trigger point injections Caroline . I find if you write down all your problems with times and dates and take them along with you to your Gp or pain consult with all the side effects from

The lyricia they will have to act or advise you differently instead of just upping the dosage of the lyricia to 300mg . It's simply not expectable for the your dosage to be upped as you can cope now with the side effects . Plus you could be a danger to yourself and your children . Getting lost at the end of your road is no joke . And not being able to talk at all . That's what I had too . I know it feels like your hitting your head against a brick walk with the doctors but keep on do that diary of events and side effects once they see in black and white how badly its affecting you they will be more likely to act and do something. About it rather that making you just up the lyricia . Sorry if I've gone on but what your going thou is just what I have had . Don't give up keep at them its the only way . Unfortunately it's only yourself that can fight your corner . Best of luck . Let me know how the injections go and how you get on with the lyricia . Big hugs Theresa xxxx

[bluebell99]

Hi

I understand where you are coming from. I had Gabapentin (originally for hot flushes) and I was absolutely useless on them. I could barely hold a conversation, didn't know what I was doing next, couldn't read a book without going back over and over trying to remember the characters, couldn't follow a recipe and loads of other things.

I also recently took Pregabelin when I was first diagnosed with fibro and like you I was asleep for most of the time. I gained nearly half a stone in the six weeks that I took it, mostly because I wasn't moving around whilst still eating the same. I am a larger lady already and this extra weight is something I am still trying to lose. The worst side effect was feeling life was passing me by and I was missing out on so much because I just couldn't raise the will and motivation. If you do decide to stop you must do it gradually.

For me, neither medication worked in the way it was supposed to, but hey we are all different.

Nancy