I'm new here, any help and advice welcomed

[ValT28]

I am new here. I have been recently diagnosed with fibromyalgia after suffering for 18 months of terrible pain and not knowing why. My pain is chronic, I have limited mobility and feel burnt out from having to deal with this each day. I'm now on pregabalin and nortriptyline for the pain, depression and sleep problems. I'm not finding the medication helpful, the pain is worse and I'm not sleeping at all as I feel 'high' from the medication, does anyone recommend any combination drug treatment that I could try that could ease the symptoms? Any help and advice welcomed.

[BlueMermaid3]

Hi there

Welcome to the forum

As you are newly diagnosed I am sure that you will find it helpful to have a look at our mother site, which has lots of information on Fibromyalgia fmauk.org

You are relatively "lucky" to have been diagnosed so quickly! Many of us have waited years, if not decades to be diagnosed, although I am not, of course, saying that you are lucky to have Fibro.

It is a difficult subject discussing medication as we are not medical health professionals and can only speak of our own experiences. It is also not possible for us to recommend medication to you as what works for one Fibro sufferer will not necessarily work for another.

However, one thing I would like to say is that Pregabalin has been discussed several times today. Here is a link to the first post that was written this morning on the subject, and my lengthy reply:

healthunlocked.com/fibromya...

It may be beneficial for you to discuss with your GP, weaning very slowly off Pregabalin and starting Gabapentin the sister drug. In my own experience the side effects of Gabapentin are not as severe from a psychological point of view, as Pregabalin.

The medication that the majority of Rheumatologists prescribe when first diagnosing Fibro is Amitryptyline. This medication is good for sleep, low mood and pain.

You will find that you have just made a bunch of lovely friends who understand how you feel. We all do our best to support each other through the good and bad times.

If you need any help navigating the forum please feel free to give me a shout, and I will be more than happy to try to help.

Wishing you less pain and more peace

Lu x

Administrator

[TheAuthor]

HI ValT28

Welcome to the forum and it is wonderful to make your acquaintance. There are many other medications that you could discus with your doctor but as Lu BlueMermaid3 says that we are ourselves are not medically trained,

All my hope and dreams for you

Ken

[Hidden]

Hi Ken and Lu have about covered it and so i will just say hello and welcome.

Sue

[Steve49]

Hi.

Welcome to our site - I hope that we can all offer you help & advise.

We are all on different cocktail's off drug's for our Pain.

I'm currently on: Pregabiline 600mg & Oxcarbazipine 300mg & Amytriptline 150mg per night & Amantidine 100mg & Trans Tec Patches one every 4 days.

I have also started using a number off braces: neck & hand & back & ankle.

These help me greatly, my Pain starts in my neck on my right hand side.

The Pain goes from my neck to my foot, so by giving it some extra support is very welcome.

I'm also constantly looking for better ways off managing my Pain.

Medications aren't the way forward for me so I need to open my mind & find better ways.

Please let me know if there is any help that I can help you with ???

Steve.

[landslider]

Hi Val

I haven't been on the site for a while as I have been in and out of hospital and battling to keep my job due to the FM.

I have tried much medication but have currently settled on Pregablin (very low dose), low dose of Targinact for pain and arcoxia for arthritic pain.

I have recently discovered these tablets;

Acetyl L-Carnitine & Alpha Lipoic Acid Capsules

They are a completely natural and seem to be giving me a bit of clearance in my head so the "fog" does not completely take over. They have also helped increase my energy levels - not so I can run around but they are helping me to function better on daily tasks.

I was a bit dubious but after taking them for 2 weeks, I have noticed that I have more interest in wanting to do things as well as having that little bit of extra energy to actually do them.

I would highly recommend anybody looking into them and giving them a go. Certainly do not make you feel any worse and I have tried all sorts to try and get my life back xx

I have also found that Aloe Vera 12000 mg help settle my stomach. Aloe Vera also help reduce high cholesterol and inflammation from Rheumatoid. Pharmaceutical companies don't advertise because they would not make money from it and cannot patent natural remedies. Ask your GP.

Hope some of you may find this useful - I believe all plants have a purpose. Chinese remedies have worked for years and they are all plant based.

Give them a try - you may be pleasantly surprised xx

[BlueMermaid3 in reply to landslider]

Hi landslider

Good to see you but sad to hear you've been in hospital.

I'm sorry to but in on your reply. Do you mind me asking where you get the Acetyl L-Carnitine & Alpha Lipoic Acid Capsules from?

Thanks

Lu xx

[landslider in reply to BlueMermaid3]

Hi Lu

I got the first lot from a site called Simply Supplements as that is where I buy joint supplements for my pooch (who has hip displasia).

I have just found them even cheaper witha company called Health4all on Amazon.

If you google them you will find loads of sites but the last one on Amazon was the best value I found xx

[beks1977 in reply to landslider]

Very interesting land slider, I'm having a read up on them now! new waves of hope always bring a smile to my face, thank you and ((gentle hugs!))

Beks

[Bambamsnan]

Hi I was on pregabalin naproxen and mst morphine took edge off pain but pain never went away not taking naproxen now as I have got dvt so gp upped my morphine and I still have problems with sleep I get what sleep I can when I can it's hard to manage I no but due to fb it's something we have to get used to Carol x

[BlueMermaid3 in reply to Bambamsnan]

Hi Carol

Are you still on the Pregabalin?

If so has it affected your mood at all?

Lu xx

[Bambamsnan in reply to BlueMermaid3]

Hi yes still on it I was on gabapentin but wasn't for me so I've been on pregabalin for at least 10 months and I've found it OK it's not affected my mood good or bad just piled the weight it says rapid weight gain and believe me it did

Carol xx

[beks1977]

Hello fellow newbie, I have been suffering for the last 19 years, gradually deteriorating as the years go buy...due to fall apart soon, I'm sure of it, lol! pregab has helped some, but has also had bad reactions for some, people, including me. even though the pain relief from them helped, the mental state they seem to place some sufferer's in far outweighs the benefits. and like you explain the "high" from them is really nasty. I mentioned in a previous post that I actually questioned reality!! that's not good for the brain!! but different strokes for different folks I guess. I have found alternative medicine allot more effective, as a compliment to the diazepam and amitriptyline. acupuncture being my favourite! really helps with my sometimes completely solid, tight muscles, and spasm's. Heat is great for joint pain too...nothing like a hot bath or Jacuzzi hehe, can never find one that's hot enough though, and for the money you have to spend on one, turn up the heat I say!! Tramadol is not worth taking either in my opinion. They are highly addictive, and have very severe withdrawal symptoms. I do believe there has been at least some relief from the pain with codeine 30/500's for some people on here, maybe that's something you could try.

If you need to talk, vent, or laugh, I'm here for you..

gentle hugs, peace love and hair grease, hehe,

Beks

[landslider in reply to beks1977]

Hi Beks

I totally believe in a lot of natural choices too but i have been trying to balance them with prescribed medication. Tell me a bit more about the Pregablin please. I have found myself to be very short tempered lately and I have terrible dreams. I have also put weight on and I am not overeating - if anything I am undereating because food makes me feel sick!!

I totally agree with the heat thing - a good hot bath works wonders and I always feel 100% better after we have been away to warmer climes xx

Mags

[beks1977]

Hello Mags,

I feel worse in heat/sun, as I also have lupus... been bed ridden until today, I love the rain! Pregab's were really bad for me, I actually had manic episodes while on quite a high dose of 600mg daily. And do you know its actually a drug used to help people suffering from epilepsy. I have had severe mood swings, zero tolerance, mainly upon waking up in the morning for some reason. I hate to admit it, but I was also violent to my poor hubby. The very man who tries his best to help me I was forgetful, and trying to cook dinner while wondering if I am in a dream or in reality aswell. I also had thoughts about taking my life. I was also on hydroxychloroquine (anti malarial drug, it is supposed to help lupus) and amitriptyline. I do believe amitriptyline works on the brain in the same way as pregabalin, so maybe it was the combination of the whole lot that sent me over the edge!! I have stopped the hydroxy's and the pregab's, and mentally feel so much better, I just wish the rest of me did, lol! I have had advice that gabapentin is a sister drug to pregabalin, and is much more mellow on the brain!

I am so sorry you are having what seems like the same effects, and urge you to talk to a doctor about maybe trying gabapentin. And always know you are not alone, and a problem shared is a problem halved, so keep ya chin up chick!!

Beks