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Fibromyalgia Action UK
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Problem with Pregabalin?

I have made a dr appointment for tomorrow as since going on to gabapentin first and now pregabalin (6 weeks in total) I am feeling more disabled than before. More nerve twitching, more fatigue and the really big ...one loss of use of leg on Saturday when it went totally numb.

Anyone else relate to this? — feeling concerned.

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Sorry to hear that you are having problems. I have been on Pregablin for about 6 years. I initially I felt worse rather than better feeling dizzy, extremely fatigued and uninterested in everything including food. I did realise though it was starting to reduce the burning, zapping pains in my chest and back so stick with it. I found d as long as I just took a certain dose I was better and it gave me some sort of a life, still in pain but I could start doing things again, within reason most days.

That numbness can unfortunately be one if the side effects. Has that numbness gone away and have you got any other back problems. I would have a word with your GP about that it might not be related to the drug but any complete numbness should at least be discussed. Hope things ease for you.x

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Hi, thanks for your response. My leg numbness was total for about 10 mins. It went once I sat down. It was really weird leg was like heavy jelly could not really control it.

I am going to see dr tomorrow. It happened just the once. X

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Let me know how you get on. That is the kind of thing if course that can unbalance you and make you fall.x

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Good luck with GP hope goes well x

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Hi TJN1 like rosewine I have been on Pregablin for many years and they are a great help. They don't suit everyone but 6 wks isn't very long & they do take a while to get used to and get the full benefits.

I quite often get various things go numb & once I was sat on the loo, of all places & both my legs went completely numb and i couldn't stand up. It's the most peculiar feeling and a bit scarey too. I have part of my heal on my foot that's been numb for yrs.

You could be just having a Fibro flare and if you are anxious at all, this will be worse. I know how you feel though and it all very stressful when you get new symptoms and your mind works overtime. Hopefully your gp will put your mind at rest, he may refer you to a neurologist to see if there is anything else going on as well but hopefully it will be fine. Good luck & do let us know how you get on.

Are you taking anything else to relax your muscles to help with the spasms ?.

Luv Jan xx

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Just taking antidepressants sertraline.

Thanks what you say is reassuring.x

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Ahh ok, I take amitriptyline, again I've been on them for as long as I can remember, it's a drug that's quite often prescribed for Fibro symptoms. I take them at night but when I'm having a flare & symptoms are worse, I take a small dose in the morning, on doc's advice & it does really help. Only trouble is, they zonk you out a bit, so can't do much apart from rest but it's better than being in pain with the constant twitching.

Luv Jan xx

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I am really having difficulty sleeping. I takes me a couple of hours to get off, then I wake at 2:00 am and keep waking every half an hour. So as you can imagine my fibromyalgia isn't going to get better. My biggest issue is walking. I can only walk about ten mins before my leg starts to feel tingly and I get burning in my bum.

I have gone from being active to inactive very quickly. X

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Hmmm sleep is a massive problem for people with Fibro. I either sleep for England or don't sleep for days. Again it is very frustrating. I find if I take my meds quite early about 8pm I'm normally relaxed enough to sleep for around 12 or 1am but I'm usually awake about 5am then lay drifting till about 7 but I can quite often have massive spasms in my legs or arms or my whole body will jump & i nearly fall out of bed lol. I must admit mine has got worse over the yrs and my mobility wasn't effected for a long time, much later in life & i can't cope with it sometimes now, so i can't imagine what it must be like for you, to suddenly have your mobility get worse so quickly, it must be very worrying for you my friend. I think once you have got your medication sorted out, things will hopefully improve. It does take some time to get it right and its usually a concoction of meds that works.

Xx

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Thanks Janet. 18 months ago I was working full time as a charity CEO. I gave it up as I knew the stress was taking it out of me so we as a family moved to the coast last year. I assumed I would have a quieter life working part time. But my health really crumbled when I left.

I guess what is says is I was right to leave but I do feel megga cheated. X

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Oh I know this myself. It's a vicious circle. I just keep getting up every hour or two to 'repositiion'- plump up the pillows and feather cushions, change sides,or on back, hanging foot out of bed or bending knees INA semi-sat up position? Yeahy. Not.

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Hi hun, you are so right, these drugs do not suit everyone. Have you already tried conventional pain relief?Has anyone referred you to a specialist physio or a pain clinic?

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I have tried paracetamol, ibobruphen gel. Gp said they would not help. I did ask for something I could take as an emergency when pain really bad but he said I needed something long term that worked on nerve pain, hence the ones he gave. X

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I take Tramadol 50 with paracetamol and I use a hydropool weekly to help keep me going. Ibuprofen are not for fibro nor for nerve pain they are for inflammation. If you are going to stop gabapent and pregab then ask gp for guidance as you will probably get withdrawal if you just stop. I,ve been on Tramadol long term and there are stronger doses to get things under control then reduce to maintenance doses.. A lot of gp,s don't know much about fibro but I would ask if can be refered to a special physio to help you with mobility issues.

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Thanks.i see a chiropractor who I trust because I have a disc problem too. So yes I will keep that up for sure.

I will talk to Gp and get his opinion before doi anything, and yes I understand there will be withdrawal.

What a change of life this is.x

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I'm on MST Morphine, paracetamo for FMl and now Naproxen (Lupus) as went through codine, tramadol and the like and it didn't do anything after after 2 years of co-drydamol, and 6 months if tramadol so i was crippled again?

But been on MST Morphine 30 mg b/d for this will be 6 years and it gave me some of my life back to be able to 'pace myself' but have my independence back to do my own house work and go out to visit my sister or friends for coffee? I couldn't get out of the chair left alone the house.

You find what works for you and stick by it?

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Hi TJN1, Six weeks isn't long to get used to Pregabalin. It took me at least three months for the side effects to settle down and for me to see any benefit. This has happened with each dose increase too.

I wish you well and hope it works out for you and you can get some benefit from the Pregabalin, so you can enjoy your new life. x

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What sorts of side effects did you have? My biggest concern is my legs.

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Hi TJN1

I am so truly sorry to read this my friend and it could be side effects to the Pregabalin or it could be a flare up of your Fibro? *NICE says some of the extensive list of possible side effects are:

*Side-effects

dry mouth, constipation, vomiting, flatulence, oedema, dizziness, drowsiness, irritability, impaired attention, disturbances in muscle control and movement, speech disorder, impaired memory, paraesthesia, euphoria, confusion, malaise, appetite changes, insomnia, weight gain, sexual dysfunction, visual disturbances (including blurred vision, diplopia, visual field defects); less commonly abdominal distension, hypersalivation, gastro-oesophageal reflux disease, thirst, taste disturbance, flushing, hypotension, hypertension, tachycardia, syncope, first-degree AV block, dyspnoea, nasal dryness, stupor, depersonalisation, depression, abnormal dreams, hallucinations, agitation, cognitive impairment, panic attacks, chills, hypoglycaemia, thrombocytopenia, urinary incontinence, dysuria, myalgia, arthralgia, dry eye, lacrimation, hyperacusis, nasopharyngitis, sweating, rash; rarely ascites, dysphagia, pancreatitis, weight loss, cold extremities, arrhythmia, bradycardia, cough, epistaxis, rhinitis, parosmia, hyperglycaemia, renal failure, oliguria, menstrual disturbances, breast pain, breast discharge, breast hypertrophy, neutropenia, hypokalaemia, leucopenia, rhabdomyolysis, urticaria; also reported diarrhoea, nausea, congestive heart failure, QT-interval prolongation, aggression, headache, convulsions, encephalopathy, urinary retention, keratitis, Stevens-Johnson syndrome, pruritus; suicidal ideation

Note

Pregabalin doses in BNF may differ from those in product literature

I want to sincerely wish you all the best of luck with your doctors appointment and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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And with that lot to recommend it Ken, it's a poisonous snake. Thank you for this listing as looking through it again I realised I had other side effects in addition?

I hope you are on the mend now Ken and wishing you a good days rest.

Hx

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Hi ukgospeldiva

Thanks my friend. I always look at any potential side effects and allergic reactions as I have so many allergy problems.

All my hopes and dreams for you

Ken x

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My hopes are ken that today, you will get the help you truly need from the consultant. A wise person always follow s your example. Looking first at the side effects and contract indications is the only thing we can do? And these are at best strange drugs- on ballance,not very efficient when they are "working" for some-i haven't yet heard a 'glowing' report from anyone who can tollerait these two evil twins?

And the generic versions are even more unpredictable!

Have a successful meeting Ken I'm thinking positive.

Hx

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Thanks Ken . I will report back later.x

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Good luck TJN1 my friend x

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I'm allergic to pregabalin and sister gabbapentin -neither suit my biochemistry? And they didn't do jack for the pain either?

It's a funny one this drug as some swear by it and others are just left swearing?

I kid you not. You know the 'Incredible Hulk' and ' Shrek'? I became THEIR sister!

My hair fell out 'more than usual' so I looked like a 'bowling ball', my normally calm self became 'volcanic',it turned high cheekboned face into a bloated and my skin bright orange -red: IDE been was 'Tangoed'! Attractive?- just as well I was widowed by then!

My own mother didn't know 'who I was'!

I think these drugs often 'amplify' and highlight other underline symptoms going on of other mimicking underline conditions that don't belong to fibromyalgia, but that Fibromyalgia is masking or has been wrongly diagnosed as such, as in my case, Lupus?

I actually have both. But I couldn't understand 'why' it didn't 'touch the pain'- well it wouldn't if your dealing with a combination of FM and inflamaitory arthritis as a combined auto immune condition?

If you have not had any other side effects (check the leaflet) then it may just be taking its time to settle down as someone else I knew took about 4 months to get the levels right for him and although not perfect gave him some relief so he could sleep in 'sections' where before he had non?

Rose wine has sensibility said you could have other 'nerve entrapment'issues so get checked by go.

Good luck, it's cheeper than St. Tropez?

Hx

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Just come back from GP. he is sending me for an MRI scan as could be my disc playing up. Wants to truly this out first. Should be in the next couple of weeks .xx

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Good luck with the MRI scans my friend x

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Currently I am on Pregabalin, and yes it has helped me,but my side effects are nodding off to sleep,even when people are around, I am on the lowest dose 25mg but although I do feel better to an extent, it is the nodding off that I cannot keep up with and I have asked my Rheumi as to her suggestions and was told I have an app to see her at end of Nov meanwhile if I want to wean myself off of Pregabalin then take one dose every other night. until the next appt. I am not having a good time with this, as one day I feel really awful and the other feel better. Anyone have any ideas ????

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I have been on Gabapentin and then it’s sister drug Pregabalin since 1996. When I was switched to Pregabalin I found that two doses of 150mg had the sort of side effects that you are experiencing. My GP switched me to 4 doses of 75mg spread over the day from 8am to 8 pm and I found the side effects went away but the benefits remained.

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