After a major meltdown on Wednesday night (my poor mama wouldn’t leave me until she knew I’d calmed down again, for fear I’d do something I would regret), I have told my GP that I can’t cope with pregabalin and that I am going to wean myself off ASAP. First night of a lower dose and I’ve been up and down with pains. I feel like I’m in a rock and a hard place between pain and side effects. I’m exhausted and just want some kind of life back, because this is no way to live. I’m not suicidal, or about to hurt myself, I’m just feeling very let down, shattered, and lost… 😩
Any suggestions?
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PenelopeClearwater
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Hello Penelope, I'm sorry to hear of your struggles with pain. I too struggle with pain/fibromyalgia. I take pregabalin, I'm on 75mg a day at the moment but some days take one more. And I take 100 mg a day of slow realese tramadol and I some times need extra 50mg tramadol and take duloxetine 60mg once a day. That just about takes the edge off it somedays are better. I'm trying to get back off the slow release tramadol because they are horrible to come off, took 3 weeks to feel normal again. Then I injured my neck and found myself back on them again. Trying to swap them for the other tramadol.I feel for you, do you have a condition or is it locallised back pain?
I had a cry about it last night, cause I can't get off the tablets yet, because of Pain. Take good care of yourself and eat well and rest well.
Hi Penelope, so sorry to hear you have pain. I always have spinal pain due to Tarlov cysts and arthritis. I am very sensitive to tablets as I also have neurological problems, so I didn’t take my Pregabalin. I only use creams, heat, ibuprofen or paracetamol, but still have pain. Maybe you could ask your doctor if you could see a neurological pain clinic specialist or maybe try skin patches for pain. Like transdermal or Lidocaine etc, ask your doctor or nerve block injections, hope you get help soon without side effects.Suzie
Have you tried amitryptyline? It works for me. I have pelvic pain, I suspect caused by trapped pudendal nerve. It took a couple of months to get the full positive effects and for the initial side effects to go though.
wow! For the past year I have been on amitriptyline for migraines but I never suspected it was helping with my PN! I also have been taking CBD for the same length of time and attributed my reduction of pain to that! I need to go back to my GP to see what to do about it. I am so pain free except while sitting for a long time, that I want to keep it this way forever. No other meds that they gave me helped at all. In fact some made me so agitated I went off them after the first or second day of taking. Good luck hon!
That was exactly how I felt with Pregabaline. Weaning of has to be done really slowly I learned the hard way. My gp told me to halve it and stop with a week. I was in so much pain. I the middle of the night I found this really supportive FB group called Lyrica survivors. They’ve really helpfull tips.. Getting of pregabalin/Lyrica was for me worse than the side effects itself and trust me, they were aweful. Good luck! Hugs
Hello PenelopeI too took Pregabalin for 10 months and felt like I was in a nightmare the whole time .
I gradually reduced the dose and changed to Gabapentin.
The withdrawals were so unpleasant but it was so worth it for me .
I didn’t find Gabapentin helped me either and was eventually put on Mirtazapine for depression caused by the pain.
To my surprise it really helped reduce my pain .
It may be a red herring but it could be worth you asking your GP or pain consultant to try Mirtazapine? That’s provided it’s ok for you to take it of course .
So sorry to hear about your situation. It is so hard to find the right pain relief that enables enough relief to live, but doesn't cause horrible side effects. I gave woken up in terrible pain today and am weighing up what I can tolerate to take. Due to my stomach issues, and bladder issues there is very little. My GP practice won't prescribe me anymore Tramadol but it is the only thing that works. Nerve pain drugs do tend to have worrying side effects. I never went on them. Amitriptyline (not spelt correctly) can be very effective.
I feel your pain!!!It has taken me a good few years to get a cocktail of meds and treatments that allows me to function. When I'm in a flare up that's a different situation, I need to take extra meds that makes me feel like a zombie. It's not so much that the pills help with pain, it's that you are so medicated that you don't notice it so much.
Unfortunately for me I'm allergic to paracetamol /codeine which has made it difficult to try a lot of meds. I was prescribed pregabalin and gabapentin but I felt like I was having an outer body experience.
What does work for me is amitryptiline 50mg in morning and 75mg at night. I also take slow release tramadol 100mg in morning and night. I have the option of normal tramadol throughout the day when the pain is worse.
Added to that antispasmodic meds.
My gp is a godsend who monitors my meds intake monthly and just having that support and someone who understands what I'm going through makes a huge difference. Also with this forum I know that their is a lot of support and people really know what we go through on a daily basis.
Have you tried a pain support group? It can help with advice on meds, physio and access to pain specialists.
I hope you find a treatment that works for you, there is a huge community here ready to give advice and support. Stay strong!!!!!
I am so grateful to all of you wonderful women. You’ve given me loads to think about and look into - thank you. And as I keep on saying, it is so reassuring to have found a community where people understand the situation. Just feeling heard makes so much difference. Thank you all x
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Nerve block 
Peripheral Nerve Surgeons for Decompression:
pudendal nerve
Second pudendal nerve block
