Hello everyone my journey started long before I was diagnosed back in 2001 but like some, was told its all in your head, ironic really they were right and didn't know it at the time.
A new GP arrived who actually understood what is was and sent me straight to The Pains Clinic who diagnosed it and put me on Gabapentin along with other strong pain killers. The few weeks of starting meds are just a blurr I was certainly out of it!!! As time went on the dose went up & up, antidepressants were added along with others.
I have decided to come off the Gabapentin after 20yrs being on them as I hate the side effects and my depression is at an all time low. Spoke with Doctor and Mental Health team who agreed it would be best in my case. I have to admit finding it a bit daunting, no idea how much pain I will be in and I know the withdrawals and brain zaps as tried before. Also coming off 2 of my antidepressants as they no longer work either and will be replaced with one drug which I'm sorry I cannot remember the name of it (Fibro Fog alert 🥴).
Over the last 20yrs have done lots of research into Fibro and the affects of all the meds as mine is extreme and cannot work unfortunately. I feel this awful syndrome took the life I loved and left me with just pain but the CBT and Pain Management Courses I have done have really helped me. They made me see I still have a life, it's just a different one, took me a while to get my head round it but was in a better place at the end of it. The group sessions were fantastic and made a few new friends too with the added bonus they understood what it is like to live with FM.
Blimey I'm writing a book here so will wind it up here and if I can help anyone just get in touch I don't have all the answers I'm no doctor but have found things that work which may help you.
Last thing I promise 🙃 if anyone has come off of Gabapentin and has any tips I would love to hear from you.
Warrior Wendy
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I have only been diagnosed with fibromyalgia in July after it appearing this year . It was a mystery at first but after seeing a rhemotologist he diagnosed & gave me the leaflet . It’s a disabilitating disease along with chronic back pain & oesteoarthiritus in my neck I find it difficult to do daily tasks . I suffer in silence I don’t like to make a fuss . I’m waiting for pain management to contact me regarding a face to face meeting .
I saw a physio recently who confirmed I have fibromyalgia.
I saw a surgeon for my back & he diagnosed fibromyalgia, I am now a little bit relieved to my constant pain knowing what I have to add to the rest of my health conditions.
Unfortunately it is a dreadful condition without a cure thus far.Fibro causes other problems some of which you are suffering with.
Make sure you discuss all your options regarding medication with your GP.
The pain management courses I attended were really helpful, they explained with diagrams what is going on inside, some helpful tips on managing your conditions. Also we had lessons in Tai chi which was hilarious.
Hi thank you for telling me about this pain management session . I’ve been referred by the surgeon,physio & GP so hopefully I’ll get an appointment soon . The pain is excruciating it’s quite a thing to deal with isn’t it ? Being on my own doesn’t help as I’ve had more panic attacks that I can’t even explain .
I hope you’re having a good day , unfortunately today is a bad day for me .
Oh I'm sorry to hear its a bad day 😢 for you. Yes it is horrible and definitely a struggle living on your own, I do too. It's really hard to explain this disease to someone that doesn't suffer from it.
Panic attacks are very common with Fibro. I used to suffer with them until I had CBT and we eventually found away of stopping them, so that maybe good for you too, speak to your GP or if you know of a local counselling service you can refer yourself in some areas.
Have they put you on Gabapentin? because they can cause depression and panic & anxiety attacks....
I am only taking co codamol and amitriptyline- I was taking duloxitine but that didn’t work for me. So I am sorry I am unable help with Gabbapentin.
I just wanted to say thanks for reiterating CBT .
Pain really gets me down - the thing is I just can’t get my head around fibro. I can’t accept the diagnosis I was so active and now I have to pace. My head is still saying you can do this but my body and joints resist and object, the fatigue is awful.
I am angry - I had CBT session through my work I liked the lady but it didn’t help because I can’t accept it. I keep thinking I will wake up one day and won’t have pain . In reality I know that is not going to happen
Reading posts on this site does help even if it’s just to know I am just not being lazy and I’m not alone
Now I think I may ask for a referral back for further CBT
I'm glad to hear you are willing to give CBT another go, I was the same it was my 2nd attempt at it before I could get my head round it. I found that once it all stopped is when I realised it had worked and I could manage my panic attacks.
Everyone is different like with medication it's a case of keep trying till you find the right one, well CBT is very similar and what works for one doesn't always work for another. It's a very personal journey and if you can build a good repor with them that can make a huge difference.
The group sessions were great as everyone there is on a similar path and the support from others was amazing. I found myself supporting quite a few people without really realising I was doing it, sharing each others experiences, tips etc is what really clinched it for me and so glad I had persevered with it.
Good luck and don't be afraid to say you don't understand something or ask questions ok.
Sadly, thirty years ago, an awful lot of psychiatrists started diagnosing fibromyalgia in their depressive patients as a way to explain the pains they were getting. This completely blurred perception of fibromyalgia as "being in someone's head". Today, psychiatrists have been told not to diagnose this but refer, where necessary, to a rheumatologist for a clinical diagnosis. Government agencies will not accept a mental health professional diagnosing fibromyalgia. It is known now that individuals suffering from severe anxiety and depression do get joint pain and aches but it is related to their mental health and not fibro. However, there are a number of fibromyalgia sufferers who do go on to get depression ... Who wouldn't dealing with this level of pain daily? Not to mention how it can affect your relationships, work, home life.... (Shakes head)
I had a bad side affect with Gabi - it affected/irritated my bladder. I don't take it anymore and never missed it. Came off it after two years without a single problem. But, I did start using a heated blanket on low which improved my muscle relaxation. I take high doses of Codeine and Tramadol for my pain. Additionally, the Gabi is often used as a nightime relaxant so we of the Fibro Clan can drop off to sleep. I was treated in the States for eight years and over there used Diphenhydramine instead (in UK used to treat allergies) which Americans also use as an otc sleep aid. I take 2 x 25mg which relaxes me and I can usually get 6 hours solid sleep before pain wakes me up. Please keep us updated about how you go on. All the best.
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