pain getting worse, reducing pregabalin, getting no help with it!

[salamander160]

Hi, I am slowly reducing the pregabalin to come off it next week, problem is nobody is supporting me with it, the gp, neurologist know I am doing it but I am struggling with the increasing nerve pain. I wake up in the night, if I can even sleep, my feet spasm, part of the nerve pain from the amputation, but also because of my cerebral palsy. I am down to 50 mg of pregaba;lin for 3 more mornings and 25 mg until next Wednesday. What can I do to carm things down a bit? I am taking codeine, oramorph but nothing is helping. I know it is my choice to come off the pregabalin but the pain is hard to deal with all the time. Its like a burning, throbbing, soreness. It is deffinitely neuropathy. My Gp expects me to wait until I go on to gabapentin.

[Bananas5]

Firstly why are yu coming off pregabalin? Secondly you do have to come off it far slower than you appear to be doing/

x

[salamander160 in reply to Bananas5]

I can't come off it any slower, its obviously not working anyway, the low dose isn't enough, when i was on the high dose, 250 mg a day, it was ok but the fluid retention was horrendous, I need to get off it so I can get on to gabapentin, get the pain back under control.

[Bananas5 in reply to salamander160]

Neither Gabapentin or its sister Pregabalin should be reduced quickly. The side effets of this action....withdrawals....are well known. Any reason why you have made this decision yourself without support from your GP???? If Pegavalin isn't working for your pain then very unlikely its bigger sister Gabapentin will work.

Pain clinics used to produce a simple chart showing rgw quantity to start..slowly....and this was reversed for stopping.

I do feel you are coming off this medication too fast and could be creating more problems.

I speak after 40 years of my late husband chronic pain and a life member of the wonderful consultants and staff at the pain clinic. I was just his carerand often had to puck up the fall out .on him, from these drugs.

It really is worth speaking to your GP.

x

[salamander160 in reply to Bananas5]

Hi, my neurologist and other consultants agreed that pregabalin causes fluid retention, I have put on nearly 3 stone in a year, not from what I am eating, some days I am not hungry, eat very little, have no appitite, can't face food, I feel bloated, uncomfortable, being in a wheelchair also, the extra weight isn't helping me, to go from 14.8 stone to just under 17 is too much of a gain especially when I have kept it down until I went on to pregabalin. I spoke to my Gp this morning, she also questioned why I have reduced the pregabalin quickly, but actually, when I was in hospital at the end of September with cellulitis, the consultant cut it in half in one go so I haven't reduced it as quick as it seems, the hospital cut it by half in one dose. I have reduced it by 25 mg a week over the last few weeks but told my Gp this morning that I am doing 50 mg from yesterday until Wednesday morning but 25 mg night times for a week and 25 mg mornings until next Wednesday and then off it. She has prescribed 300 mg of gabapentin for one week from next week and increase it by 300 weekly, I just need to get the pain back under control, stop the spasms and nerve pain. When I was on 125 mg of pregabalin twice a day, at one point I was on 150 twice a day, I was literally falling asleep in my wheelchair, I was very drowsy and risked falling out of my wheelchair, I could not stay awake. I have tried to get the dose right but the fluid retention is dreadful. I was on gabapentin 3 years ago when I burnt my foot, which is what and why I had the amputation this year but I was on 900 mg 3 times a day but it was too much, I had to stop it. I am hoping 300 mg of Gabapentin twice a day will control the the neuropathy and spasms in my feet and legs. My Gp has told me to be extremely careful not to over dose and take too much codeine and oramorph, but i hope I won't need either if I can get the nerve pain under control. When I go to the lower limb clinic to have a wound dressing on a Tuesday, I may need to take 5 mg or 2.5 mg of oramorph to help with the pain when they clean the wound and lower the sensativity but I will be as careful as anyone can be. I try to limit my codeine because of constipation, only take oramorph a couple of times a week, the pain clinic would prefer me to take oramorph to codeine but the gp only gives me one bottle at a time. I am not currently under the pain clinic, my consultant referred me to the pain clinic but because I was ill with cellulitis and then had covid for a week or so, they took me off the list thinking I do not need their help but in fact I need their help more than ever now. I need to get in touch to sort this out. To be honest, I'd rather not have to take any medication but have no choice. I want to get the weight off, back down to my original weight, if not lower, I was doing slimming world last year, lost around 20 lb in 12 weeks but it has rocketed since I have been taking pregabalin, Until then my weight was always below or around 13 stone. I am worried about the extra weight affecting my heart etc. The problem is, I am visually impaired and have to be extra careful also. I manage all my medication myself but if I am in pain, if the nerve or phantum pain kicks in, neither codeine or oramorph really help, the lowered dose of pregabalin isn't doing anything at all. It is really hard to get it right, I can only but try!

[weathervane]

i am reducing pregabalin at the moment with support of rheumatology nurse. I was reducing by 25mg every 2 weeks, when i got to 50 the pain increased so put me up again to 75mg for 3 weeks with a phone call on Wednesday to see how im getting on . I was also started on a low dose of Amitriptyline before I started reducing. You definitely need advice when doing this in my experience so far . Best wishes.

[salamander160 in reply to weathervane]

Yes, the hospital gave me a low dose of Amitriptalin which I take at night. And yes I need help with this but there are times when there is little pain and times when there is loads of pain, I am hoping the gabapentin is enough without anything else.

[Tim61]

Hello Salamander 160 , you are trying to reduce it much too quickly. You need to do it slower as it is renowned for causing withdrawal problems, there is a liquid version, if you can persuade your Dr to prescribe it so you can withdraw in smaller amounts over a longer period, ( Drs don’t like prescribing it as it’s very expensive). I don’t know if your on Facebook, there is an anti Pregablin group on there , with a lot of very useful information about withdrawing from it , I take it myself in small doses twice aday for nerve pain, anxiety and quite often wonder about withdrawing from it completely myself . Good luck, and I hope you can get some constructive help with your withdrawal, I think your first port of call maybe a discussion with your GP again, and hopefully they may beable to give more support.

Hi again Salamander 160 , I’ve just read your notes on your life history, you haven’t had an easy life, it sounds as though you should be having more support through the care system, please discuss these problems with your doctor as well as the Pregablin, and good luck in everything you do , I hope life wil improve for you .

[salamander160 in reply to Tim61]

Yes, I spoke to my Gp this morning, she wasn't happy that I had reduced the pregabalin so quickly but nobody has guided me with it, not my neurologist, Gp or nobody, I have done it the best way I can. I am almost off it now, one week to go, the pain is there, some days it is 7 or 8 out of 10 but some days it is almost nothing, it depends on how tight the bandaging is, how much fluid builds up in my legs being in a wheelchair, it is really hard to control. The nurses at lower limb ant tissue viability want me to elevate my legs as much as I can which I do but I live alone, I only have carers 31 hours a week so have to do as much as I can for myself. I have wifi keyboards for my computers on my sofa and bed so keep my legs up as much as I can but I still have to live. When I was in hospital with cellulitis at the end of September, they talked about me getting a better wheellchair but it all takes time. I am doing the best I can with the support I get. All I want to do is get my weight back to a level I am comfortable with and get the pain back under control. It is really difficult when different medical professionals try and advise you but all give conflicting advice but do little else to help. It is very difficult.

[salamander160]

Hi, I just want to add here, I have so many health problems, there are so many departments involved in my medical care, neurology, endocrinology, epilepsy, dermatology, opthalmology, but none of them liaise with one another and by the time my Gp gets to read all the hospital letters, some weeks later, she may be several weeks behind. I need to find a way to get everyone to work with me to try and make it less complex for me and also for the Gp, it is an impossible task. Of course now, I have lower limb, orthapaedics, and probably others. I am very confused already!

[Paula-29]

I would urge you to ring your gp and ask for support whilst your reducing pregabling but as someone has said if pregabling isn't working I doubt gabapentin will I'm on 900mg now and it Bearley works for my crps x

[salamander160 in reply to Paula-29]

The pregabalin does work but it is the side effects it causes which is why I am trying to come off it otherwise I would have stayed on it.

[MSTKing]

I have SCI and found very little difference between Pregablin and Gabapentin but good luck - hope you get your nerve pain under control soon.

[salamander160 in reply to MSTKing]

Thank you, I hope so!

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hi Salamander160

I am a forum moderator here at Pain Concern and have read your post and have been following the replies and conversation. It's great that there is so much support.

Pain Concern has a publication that has information on both Gabapentin and Pregabalin. Just click the link below and it will take you directly to the page

painconcern.org.uk/product/...

The following edition of Pain Matters, the quarterly publication from Pain Concern has a specific article on reducing meds, which you may find interesting. You can subscribe to the magazine on the website - they have lots of relevant, interesting articles

painconcern.org.uk/product/...

Airing Pain is Pain Concerns Podcast. The link below will take you to the page that has episode 137 which discusses, prescribing and de-prescribing. You can also see a full list of the podcasts and you will find more that are relevant

painconcern.org.uk/airing-p...

Hope this helps

Pain Concern

[salamander160 in reply to PainConcernHelpline]

Hi, I have downloaded the pdf, I am not sure how to subscribe to the newsletter, am visually impaired also would need it in a format I can read so obviously pdf is the best. But thank you for your help.

[PainConcernHelpline Moderator Community Champion Pain Concern in reply to salamander160]

Hi Salamander160

painconcern.org.uk/pain-mat...

This link will take you directly to the page where you subscribe to the magazine. there are a couple of options - one of which is digital, which may suit you better.

PainConcern

[salamander160 in reply to PainConcernHelpline]

ok thanks.

[Twinkle3131]

HiI suspect your pain is increasing BECAUSE you have reduced the pregabilin. Like you I have been taking it for 13 years for neuropathic spinal pain. I also take CBD oil twice a day which helps the most. I cannot tolerate the THC element at all. (Massive nightmares).

I stopped all the codeine and narcotics as they did nothing. Fentanyl patches worked but I fell over heaps!

Not sure of law in UK so try the cbd if you can get it. I do remember that Pregabalin had a better affect than gabapentin which was why I changed. Your gp is right to make you wait. Maybe you should go back on the Pregabalin At least you now know that it does work.

CBD being cannibidiol . I can drive etc as it is not a 'stoned' drug. None of the bad stuff..Good luck from NZ.

[salamander160 in reply to Twinkle3131]

Hi, I am starting to feel the effect of coming off the pregabalin, my Gp has prescribed the gabapentin, the pain isn't too bad, this morning I can feel my big toe even though it isn't there. Codeine and oramorph take the edge off and help with the spasms, but I am almost off pregabalin now, just have one week to go, I have got this far, the low dose isn't doing much so I may as well continue and see what happens. Trouble is I am not comfortable carrying all the extra fluid, I know all drugs have side effects but its the fluid and extra weight gain which is bothering me the most and it deffinitely isn't my diet as I eat no differently to before. If things don't improve, then I will have to try something else. I think you can get the cbd oil here but am not sure. If it wasn't for the fluid and weight gain I wouldn't be making any changes, being in a wheelchair it is making things much harder for me.

[LPOOLFC1]

Hello there. I am sorry your going through this. I totally understand, as I was on pregablin and it was awful. It was causing me to have convulsions, it also gave me seizures. The doctor thought it was epilepsy but I had all tests done and thank the lord. It came back, that I didn't gave epilepsy. I decided myself to come off the pregablin. Prior to this medication. I was also on gabapentin. That also made my body stiffen up. It also me my muscles and my whole body move and I couldn't keep still as I felt so so so restless. I am also on oromorph and morphine capsules. If you know the pregablin is causing you to feel more unwell. Then definitely it is your choice to come off it. Keep on and on at the doctors. I hope u get sorted soon. God bless

[salamander160 in reply to LPOOLFC1]

Hi, Yes, I am almost off pregabalin now, have spoken to my Gp again today, she has already prescribed the gabapentin, I will be starting it early next week. Some of these medications have some really awful side effects. My Gp is worried about me over dosing but I am being as careful as I can be. She wants me to stop the opiates and just use oramorph and gabapentin, as long as it helps the pain, I don't mind what I take. I hope you are ok now?

[LPOOLFC1 in reply to salamander160]

Hi

Gabapentin had the same affect as the pregabs. People are different and some have bad side effects than others. Yes I am ok now thanks. If you feel you need to be on the other painkillers. Don't drop anything. Just because the doctor has advised you to. If your getting more of a good response from them. Then maybe just stick to them. I hope u get the.help you need soon:).

[salamander160 in reply to LPOOLFC1]

Hi, At this minute in time, the pain is at its worst, I am almost off the pregabalin, my Gp has told me to stop taking codeine or using the pain patches. What does she expect me to do, just sit here with my foot spasming and trying to cope with the pain, its where they cut the bone, where my big toe was, it really hurts, I have the gabapentin here now, I really need to get this pain back under control. I fell asleep and forgot to take my tablets, took them later, she is very worried about me going into respiratory arrest, taking opiates and gabapentin, what is safe? I am not going to do anything unless I need to. I am at a complete loss right now. My foot spasms and it makes it much worse.

[MEandFibroman43]

Try blue lotus flower, can make tea or smoke helps with my fibro