Fibro v Gabapentin v Pregabalin v Duloxetine or just a whole new way of approaching it.

[catcalling]

Hello all.

I hope today finds you all coping one way or another😀

Now having posted a few weeks back about severe stiffness & fibro and having many of you kindly answer and offers of some really helpful advice I decided unless I try and make a change my life was at a real stagnant phase.....

Now I had been on Pregabalin for a number of years even without a diagnosis and the weight gain had been piling on steadly to the point of 4.5 stone, that in turn was putting so much pressure on joints that were already struggling, I had little to no energy, my feet were swelling, the pain was just constant , I'm not diabetic but my blood sugar results were sitting higher than where they wanted them to be and the doctors were useless ( thats if I could even ever get to speak to one)....So.....

I rang the surgery last Monday morning and waited for 55 minutes until I could get reception to answer, I then insisted that it was really important that I spoke to someone ( I guess I laid it on a bit but I was desperate!)

Well I was rung back by a locum doctor who was bloody amazing, I went through everything with him, I explained I had researched and I felt that maybe the meds I was on was just not suitable for me, he completely agreed and asked me if I had anything in mind.

I asked him If I could try Duloxetine to which he agreed, he also suggested that it could be worth trying a low carb diet along with decaf coffee ( that was my go to) as he had heard that these simple steps had been very beneficial to some people.

So this next step is NOT recommended and I would definately not advise anyone to do it and it's not what the doc told me to do but I did stop taking Pregabalin and for 8 days I've felt like I've been to hell and back, the insomnia, the cold/hot sweats,the aches, the nausea has been relentless and at times I really though what the hell have I done, but........

I'm now on day 12 and I'm on a zero /low carb diet, I've cut out caffeine, I've upped my water intake and I'm currently on 60mg duloxetine 1x morning and 1 x evening.

i've lost almost a stone, my codeine intake is almost zero and last night I had the best sleep in what seems like forever.

My blood sugar levels have dropped ( I bought a test kit to keep an eye on it) and I really do feel like my old self again, there's still a way to go but I feel there is light at the end of what seemed like a very long tunnel.

I hope this post will bring some hope and encouragement to others out there x

[golly123]

Thank goodness you wrote that. My weight just goes up and up and up. I have the pain clinic coming up again soon (unless they cancel again!). I am fed up with this weight gain. My gp is useless. I will see if i can change on to meds you are now on. How good are you finding the duloxetine? Thanks

[catcalling in reply to golly123]

Hiya Golly.

For me personally so far so good, but as desquinn has rightly pointed out different meds work differently for some and not for others.

Hopefully you can some more answers at your next pain management session and find something that suits you 🙂

[desquinn Partner Volunteer FMAUK Trustee]

glad you are feeling better but as you stay stopping meds without tapering is generally not a good idea and can be dangerou. It is not advised to do with pregabalin and antidepressants.

As to meds it is always a case of the best one for you is the best one for YOU. but there is no easy way to know before trying them all which is better and what is more likely to work.

[catcalling in reply to desquinn]

Absolutely, I just had to put it down how I had done it simply for the time frame from my last post till this one

[Winter_night]

Well done on being so motivated and thank you for sharing 🙏🏻 I’ve known for a while that sugar and carbs - and particularly gluten - aggravate my fibromyalgia and hypermobility pain but I’ve been feeling sorry for myself and comfort eating my way through the last couple of months since being diagnosed with PoTS. In fact I’ve just polished off a large baguette slathered in butter 😅 Your post has made me feel motivated too, to draw a line today and start eating right again… no more carb and white wine pity parties!

[catcalling in reply to Winter_night]

You go winter night 😁.

Sometimes other peoples experiences or just their way of thinking is all the boost that we can all learn from.

I've read so many posts over the course of the past few months and some of them really did make me sit and think.

Here's hoping to positivity and well being all round🥰

[vmagpie in reply to Winter_night]

Hi sorry to jump on your response. Question: if you have a pots diagnosis, do you question maybe you have hypermobility elhers danlos rather than fibromyalgia or as well as fibromyalgia? Only I'm questioning my fibromyalgia diagnosis as I believe I have ELd. Just curious 🤔

[Winter_night in reply to vmagpie]

Hi vmagpie - I’m glad you asked as it’s been on my mind too and I think I may potentially have both. I was asked in Autonomics, whilst being tested for PoTS, if I had - or had been assessed for - h-EDS. I’d never heard of it until then and haven’t been assessed for it by GP or by rheumatologist, unless it was some time ago and I’ve since forgotten. I’ve never been assessed against the Beighton score but having tried it myself I think I’m between 6 and 8. Not sure about elbows. They clearly invert when I straighten arm but it’s hard to tell!

The autonomics letter refers to joint hypermobility syndrome which I think is a polite prompt to the rheumatologist. I next see rheum in April. He prefers to be the one asking the questions and I fully expect he’ll dismiss my concerns - he’s incredibly rude tbh - at which point I’m going to request he refer me to hypermobility specialist. If that doesn’t work I’ll ask autonomics to do it, or my GP. I have too much at stake not to investigate every possibility. I have many of the signs but not all, I suspect I’m pretty far along the JHS spectrum - close to HEDS perhaps but not fully there. Do you have many of the signs too? What was it that raised your suspicion can I ask? x

[Gigiruth]

Hi Catcalling.Well done you on making change.

I guess I'm with DesQuunn on the managed removal of meds. Can upset mental and physical health to just stop. Bit of a shock for the body.

You seem to be motivated to take back all the bits of life you can.

Spring will be here soon and I am spurred on by longer light and late winter sunshine.

Thank you for your inspiration.

Thanks for sharing.

This is a tough road,but let's do this!

Take care

Gigi

[CarolineJO]

hey,

Just wanted to say well done catcalling. I’ve recently gone on the fast 800 diet as I’ve put on 4 stone. The doc recommended it (low carb Mediterranean diet) and I was dubious but within 2 days my pain had diminished and I felt lighter, brighter and like I was 25 again (I was feeling 75 at 44!!) honestly it’s transformed every day for me. I’ve lost nearly 1 1/2 stone in just under a month and I’m on top of the world.

One thing worth mentioning that I’ve discovered while on this diet is my reaction to Aspartame and other sweeteners. I treated myself to a Diet Pepsi the other evening and the next day I felt like I’d gone straight back to pre-diet pain levels. I did it again a few days later unaware that that was causing the pain and felt the same the next day, it was only later that day after I put 2 and 2 together and realised that artificial sweeteners cause an inflammatory reaction. So to those who don’t fancy giving everything up just try getting rid of the sweeteners as I think with our conditions (fibro and arthritis) they are poison.

Love to all ❤️

[Winter_night in reply to CarolineJO]

That’s interesting - I think I need to cut out Diet Coke! Thanks for sharing - I’m on day 2 and I’m already hungry/craving but I’m going to stick with it! x

[Coogy52]

Hi, I was on Pregablin for just 12 months and put 3 stone on. My doctor told me to wean off it and put me on 120mg Duloxetine a day. It's much better for me. My weight dropped off as soon as I came off Pregablin and no weight gain with my Duloxetine 👍👍

[Fra22-57]

I am pleased you are out the other side but also pleased you don’t recommend going cold turkey.Gradual decreasing recommended.I ended up up on a drip in hospital a month after foolish nurse told me to stop meds night n morning before a procedure.I collapsed in waiting room.You have done well but have survived which is good.I hope the new drug helps you a lot and 10/10 to the locum too

[denny_the_wench]

So glad you are finding something that helps. For me the Duloxetine was the game changer as one of the side effects is that it suppresses the appetite. When I started on it nearly 2 years ago I was 4 stone heavier than I am now. Before everyone jumps to go get it as a wonder drug - that was also with a conscious diet and exercise regime which had failed previously but with the reduction in pain and addition of appetite suppression managed to work enough for me to be able to have my knees replaced (BMI now low enough)... That at least has taken away two sites of severe pain - just got the rest of the fibro pains to deal with now 😆

Keep at it #fibrowarriors!

[Amethyst-Mermaid]

great news!

I struggled with duloxetine only was on it for a weekend and I couldn’t sleep at all. Had similar issues with sertraline. I seem to be very sensitive to everything.

Long may it continue for you

[NannyNooNoo in reply to Amethyst-Mermaid]

I’m sensitive to the meds they use for fibro too - GP advised not to try any more 🤦‍♀️🤦‍♀️.

[Amethyst-Mermaid in reply to NannyNooNoo]

frustrating isn’t! I’ve tried them all. Having mast cell activation tests soon..

[kenjod in reply to Amethyst-Mermaid]

I had the same reaction which is a shame as those for whom it works seem happy with the pain relief. I also tried mirtazapine with the same results. I am now only taking amitriptyline & paracetamol which is moderately effective.

[Winter_night in reply to kenjod]

I tried mertazapine years ago for chronic sleep problems and it made me so hungry, I remember sitting at my desk eating whole packs of M&S croissants - in between lunch and breakfast 😄 I gained about two stone, most of it on my front. I think I sent up 3 cup sizes (sorry - TMI) 😄

[Amethyst-Mermaid in reply to Winter_night]

omg! I was on that for two weeks and I gained a stone. Really great drug for people who struggle to eat. I don’t have that issue! And yes the front weight gain is crazy, including tummy area. 😉

[Amethyst-Mermaid in reply to kenjod]

be careful in the sunshine, that’s when I found out I’m allergic to Ami, it caused sun burn and I don’t burn. I had awful photosensitivity. Other than that I slept well which helps pain.

[Winter_night in reply to Amethyst-Mermaid]

That will be why I have patches of pigmentation on my face! Thanks for the tip off, I hadn’t made the connection. Will need to up my SPF I think. Honestly I’ve had more practical advice on this forum in a week then I’ve had in 2.5years of clinics! x

[Amethyst-Mermaid in reply to Winter_night]

that prob would be why! Just be careful, even with sun cream I had bad reactions. Sunshine Is good for health and well being. I’d deffo wear a hat if you can. My dr took me off them. I’d actually stopped them as soon as I researched and before I went to him. Although I am allergic to lots of medications, so i could just be a sensitive soul 🤣

X