Central sensitivity syndrome

I have FMS / Myfacial pain with trigeminal neuralgia features octial neuralgia migraines IBS Rosacea and central sensitivity syndrome . I was wondering if anyone else has been dx with central sensitivity syndrome . I have been having trouble with meds . I take gabapentin . My nuero has tried me on amytriplyine nortriptyline veffer cymbalta as my second med but have had bad and allergic reaction to them . Currently hurt all over . I feel alone on this island right now .

6 Replies

  • I can't help but you're not alone. Think everyone's out Christmas shopping. I'm don't know what CSS is like but I do know the 'hurting all over'. Perhaps you can ask for something a bit stronger to take the edge off the pain. Even if it's short-term it'll give you a break & it sounds like you need one. All best thoughts in your direction. Ann

  • Hi kgarrett1, i have had similar experience, seem to react oddly to most meds i have been given. All suggestions from neurologist failed apart from gabapentin. Before this i was on tramadol, so now both and fluoexetine. All migraine meds failed except injections, am now much to painful to inject myself and have just been given nasal meds to try. I am now sensitive to light, smells, sounds etc, spend most time at home between this and pain and fatigue life is grinding to a halt. Have you tried a mouth guard by the way, this has decreased my migraines to about 5 a month.

  • I didn't know they actually gave Central Sensitivity Syndrome as a diagnosis.

    I knew they understand that's some of what's underlying in FMS, but I didn't know they sometimes give it as a separate diagnostic label.

    Most people with FMS suffer with this though, especially moderately and severely affected.

  • Hi kgarrett1,

    I have experienced similar problems in the past and was told to stop my morphine which caused such painful withdrawals that it felt inhumane of the Docs. They were blaming the headaches/migraines on the morphine and would not listen to me when I told them that they were present prior to taking morphine. My body was just recovering when I reacted to the gabapentin and had to stop abruptly, again having to ride out the withdrawals. I'm a bit concerned as the Amitriptyline that helps is now giving me a touch of eczema, for now I'm happy to moisturise and deal with it. You are not alone and will recover once you hit the right combination. I am actually beginning to believe that my mind is clearer on fewer meds and I'm still coping. I know it's difficult and the positives are sometimes very hard to find but they are in there if you look hard enough.

    I for one have been lifted since I started to communicate on this forum. It is a relief to find people outside my immediate circle of loved ones who understand and empathise with me.

    I had a Greater Occipital Nerve Block today, bilaterally so technically two I suppose. I have read nightmare stories about increased pain and awful reactions but read around a couple of studies and found that the place I was having mine done had carried out primary research and that my symptoms were experienced by the people who had a positive outcome from the procedure. So far I feel fairly good with a mildly aching head and strange sensation around the back of my head but no excruciating pain or nightmare experience to report. I should know in 7 to 10 days if it's worked for me to rid me of the Occipital Neuralgia and Migraines. I was also put on beta blockers for the migraines and they have improved greatly. I am feeling optimistic and may well be headache free by Christmas. There were times over the years when I felt as you do, please don't give up or be put off as I truly believe there is a solution out there for everyone. My neurologist told me today that we are all different and it's a matter of 'giving it a go' based on symptoms that each patient presents with. It was only six months ago that one pain consultant told me that there was not anything else he could offer me and told me that as I have Fibromyalgia it would be pointless offering me nerve blocks as I would eventually need them everywhere and he was not going to go down that road. My heart sank initially, then I got cross and decided that his opinion was his and that I would seek another opinion. I am so pleased I did as I do feel different in my head, the headache that I've had for around four years has finally moved and is not as achy. It remains to be seen if it's worked but the first signs are good. Hang in there.

    Good thoughts and kind wishes coming your way,


  • Hi there, you are not alone. I have FMS Myofacial pain, CFS, IBS, Migraines, MCS, likely MUSES, and the mental health issues that go along with these. I hope to be able to get tested for in the near future for MUSES. Look it up as MUSES sensitivities. I have been put on a ton of meds and I just couldn't handle them. I almost gave up. They tried me on Lamictal on their lowest dose, but it was too much. I then went back and asked to try half of the lowest dose and some of the pain and sensitivities have reduced. Don't give up and rest, rest, rest, when you need it. I take Epsom salt baths, but be careful not to make it too hot or stay in too long. Just take care of yourself and don't be hard on yourself. Soft hug, hang in there and send me a message whenever you fee like venting, or sharing or whatever!

  • Hi kgarrett1

    I am so sorry to read that you are suffering in this way, and I genuinely hope that you can find some resolution and relief to the issue. I must admit that I have no experience of ''Central Sensitivity Syndrome'' myself but I sincerely hope that others can come along and afford you the answers that you so desperately desire and deserve.

    All my hopes and dreams for you

    Ken x

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