Extremely confused

I have been back to the doctors today about my gabapentin (neurotin) as I have been suffering with a fever, getting lost, severe migraines and aching in my back. On top of all the pain I already have haven't been able to brush my hair or scratch my head. They advised me to come off of the pill and see how I feel in a week? Occ health also have taken me seriously in work and believe I do in fact have fibro, I mentioned this to my doctor and she just humphed and said could be. She is a great doctor and I'm waiting to see occupational therapy but im just confused on how to really deal with the pain im in knowing the other tablets don't really touch the pain x

Just a really down day today 😞😣

21 Replies

  • I know how you feel with gabapentin I stopped it as I felt the side effects of this and other drugs just replaced one set of complaints with another. I hate all these side effects. I don't know about anyone else but I'm certainly not able to get on with any kind of life when I'm on these things. Have you tried anything else for the pain? I hope you get sorted soon

  • Arcoxia, tramadol, co codamol, amatriptlin (can't spell) naproxen. I've had side effects from most if not all these tablets. Honestly I believe smoking weed would be less harmful to my body and much more effective. I don't do that though obviously lol. I'm trying some relaxation techniques but the pain is just always there x

    I'd love to just get on with life without pain and being tired all the time x

  • I know it's horrible. I've had quite a few different meds and if they make me feel bad I won't take them. Amitryptline isn't too bad for me it makes me groggy in the morning but it passes after about fifteen minutes. I'm only on ten mg I don't think I could handle more it helps me sleep so I don't mind it. As for weed I've lost count of the times people have told me to give it a try, I did that when I was about 18 (naughty I know) and it made me paranoid and anxious so I know not to go there. I've heard it has benefits and they give cannabis tablets to people with severe pain so there must be some truth in it.

    It would be nice if they could invent something that actually works without the side effects. I worry about organ damage too I'm so anxious about taking meds xx

  • @Snappy, interesting to know that someone else reports this as a result of smoking the humble weed. I also had extreme shivers for a good hour. Anyway, I wouldn't be able to smoke anymore.

    @CushMonkey, I'm sorry the tramadol doesn't work as that is a mild opiate. But it is not one of the stronger ones. Have they ever discussed Percodan? (oxycodone and acetominophin) I take Vicodin and Percocet is way stronger. I know it can be addicting to take any such drug, but I am really careful not to abuse it, not to take it unless I am in severe pain, which it sounds like is a regular occurence for you. Tramadol is much more at the level of Vicodin than Percocet. Just a thought.

    My GP was a bit snide with me (or so I thought) when he recommended aquatic therapy, but I know it helps some fibromites.

  • I try not to take the medications myself, I know I have an addictive personality so I wouldn't want to get hooked on tablets. As of yet I haven't tried any of the medication you mentioned other than tramadol. I'm just hoping I see this Occupational therapist very soon x

    Do these all work for you?

  • Sorry you are suffering. :(

    SSRI medications can sometimes help with pain (and with mood).

    Any chance your MD would allow you a narcotic pain med, if nothing else helps you?

    Sometimes this is helpful even short-term, during med changes/med withdrawals.

    Please do keep us posted on how you are doing?

    Feel better soon!


  • It is very difficult and am sorry to say no easy answer. It is really down to finding that right combination of drugs which can take time, sorry. I want to wish you all the bets of luck with this.

    Good luck


  • Hi, I have tried gabapentin too, and it makes me feel worse! So I,m staying with amitriptiline. Give it a try, I have been on this for a long time ,and although it has helped me enormously. If I have a bad flare up, I,ll take tramadol for a short time only.

    We all react differently to medication,and it can be hard finding the right one for you.

    Good luck love, hope things improve for you soon..

    Sending you a gentle hug. X

  • Hi cushmonkey, I also have ami, to help sleep & pain, what also made a difference to me was Duloxetine, nearly all my Fibro pain disappeared when I started it two years ago. Although it's an antidepressant it also helps with pain for Fibro....

    I hope your pain improves soon.....Claire

  • I have previously been on ami it didn't agree with me at all. Thank you all for the messages :)

    when I said 'the pill' I meant gabopentin haha!

    I will find the right pain meds eventually, I really appreciate the advise from everyone x

    Soft community hugs to you all! xxx

  • It's interesting what Valent said about the Duloxetine, considering the research that fibro may be connected to small fiber polyneuropathy, and that is one of the uses of Duloxetine. Anyway, I hope things work out for you.

  • Have you tried combo of co codamol and pregabalin. Just a thought works ok for me, keeps pain at a level I can tolerate, I just think that when it flares up or the pain is severe nothing will help unfortunately.

    Good luck & hope you find something that suits you soon and you can ease the pain.

    Kind regards



  • Hi CushMonkey,

    Your post came to mind. I wonder how you are doing? I hope you are feeling you are getting somewhere with your doctor and/or occupational therapy? I hope you are more comfortable?

    To Your Healing,


  • Hi,

    Funny how we are both awake haha!

    I have had more blood tests and now i've developed an iron deficiency because of my lack of appetite =/

    Doctors didn't know if it was my tablets and told me to come off them for a week, Although the headaches neck ache and increase in pain died down for a couple of days. All of my other pains feel 100 times worse :(

    I have a meeting with work in a couple of hours to discuss the Occ health report.

    I have contacted the hospital numerous times just to see how long it will be until I see an occupational therapist, they said they will get back to me and I still haven't heard back.

    It's been quite a hard week, as you could probably understand i've been very tired and a bit off. A few friends have been coming over and complaining to me wanting me to fix their problems, I find it very difficult to turn people away which has lead to more lack of sleep. Trying to stay really positive but I feel completely at a loss.

    I'm sorry my update doesn't have much of a happy time line. I wish I felt great but I don't.

    How are you feeling? Is anything working for you??

    Comrad hugs! x

  • It's sometimes a difficult to be there for friends when in such pain, I know.

    Has to be tough to continue through each day in such pain?

    I am glad you have the meeting today! I hope you are offered some additional support!

    Sorry about the anemia, yet glad you now know about it and can do something about it!

    I wish you felt great, too, Cushmonkey! :)

    I am going through medication adjustments. I am very sensitive to most medications, so many options are eliminated right away, with very short trials. Still trying to find the right combination. The combination which worked 5 years ago does not work now, etc. Things keep shifting.

    I hope we will find a helpful combination soon. :)

    Let's hope your meeting goes well today!

    Let's hope you hear back on occupational therapy very soon, as well!

    Let's hope you have some additional pain relief, pronto!

    Keep us posted, if you'd like. :)

    To Your Healing,


  • Unbelievably you have been my angel to a very hard day!

    Thank you so so so much!

    Let me know if you find the right combination for your pain to :)

    When I have some news I will keep you all updated :)

    Hope you have a pain free day xxxx

  • We are all angels unto one another! ;)

    Have a healthy, joyful day!

    Looking forward!

    To Your Healing,


  • Aww bless you Hun sounds just like me all them pains etc you've explained it's so awful to live with I wish they would find some helpful medication do you feel. Like you cannot walk properly to some days and I struggle with steps I'm only 37 it's not fair I have a family as well so hard to get by cheers liz

  • I'm sad to say guys but my meeting did not go very well today, if I do not return to work in the next couple of weeks in afraid my job is gone.

    I suffered greatly last night and this flare up is lasting and getting worse 😔

    Thank god for my trusty stick or I would have gone arse over tit walking out of the building lol! That would have been a sight!

    I can't imagine how people with families cope and I struggle with me and my partner. Respect to everyone who is in the same/worse situation than I am.

    I will be returning to work but I will need a note from the doctor to put guidelines in so I do not over stretch myself. In this climate I don't feel there is much choice.

    I am hoping I can have children one day with my fiancé as he would make an amazing dad, you all give me hope 😘

    I hope we all win the lottery and live in a happy pain free heated pool!

    I'm off to try and get some much needed rest!

    Soft hugs and fibro love to you all! 💜

  • Hi Monkey,

    I am sorry to hear you are stressed after your meeting. I hope you can rest and have a heated pool somewhere while you are preparing to go back to work.

    It sounds like you are able to provide a not from your Doc? Hopefully you'll have some input what they write. That should be some safeguard.

    Keep us posted, and, again, get lots of rest and relaxation now, before you go back!

    Best wishes!


  • Hi CushMonkey,

    Sorry the meeting did not go as you'd hoped. :(

    It may be helpful for your doctor to write guidelines/limits to help to protect your well-being.

    I am hopeful you will have your dreams come true in life, despite some challenges.

    It's always best to be sure you are taking great care of yourself; this will help you to say focused upon your desires and will help you in achieving them. :)

    Maybe institute a rather comprehensive plan of self-care, in hopes of remission, as well as potentially stopping/slowing any progression?

    I wish I'd known more at the onset of my experience with FM. I would have done more then, with the information I have now.

    There is some added hope in the fact that more FM research is happening and more is known now than 20-30 years ago. I am hoping for a big breakthrough in FM research, understanding and treatment options.

    I hope all goes well with you and your partner. :)

    Don't forget to have fun! :D

    Hope to see you around! :)

    To Your Healing,


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