Does anyone know what is the best med... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Does anyone know what is the best med for fibro? I'm taking Lyrica already on the maximum dosage 600mg, and it is not working.

Pituxa profile image
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haggis profile image
haggis

have not found anything helps apart from amitryptilline at night which usually allows me to get some sleep - for a wee while anyway!

yanto71 profile image
yanto71

try not taking them for a day and see if they are working or not, you'll soon know!!

kraftyk8 profile image
kraftyk8

Hi Pituxa and welcome, as I haven't seen you here before.

I don't know how long you have had Fibro, who diagnosed it, or who is managing it, as your profile doesn't tell us.

There are loads of medications that can help and not every one suits everybody.

It is most usual to have a combination of an SSRI or SNRI anti-depressant, a neuropathic analgesic and a simple analgesic. Sometimes with the addition of a muscle relaxant to help with sleep problems. Anti inflammatory analgesics are not appropriate as Fibro is not an inflammatory condition.

Ideally, you will have been diagnosed by a Consultant (usually a Rheumatologist), then referred to a Pain Clinic to see a Pain Consultant, who will have started you on the appropriate medication and referred you for a place on a Pain Management course. Your GP will have then been left to manage your Fibro on a day to day basis and to tweak your meds until the meds you are taking, work for you.

In reality, I doubt that all of that has happened and you will need to be proactive in making it all happen, normally by badgering your GP to get the ball rolling.

These two links, the first from Fibro Actions main web site and the second from NHS Choices, will give you loads more info.

fibroaction.org/Pages/How-I...

nhs.uk/Conditions/Fibromyal...

I hope this helps a bit

happy hugs, kate :)

I take baclofen, gabapentin and duloxetine, they dont work for me

renrobin profile image
renrobin

Hello Pituxa, hope this helps:

I take Zydol - two 50MG tablets ( Tramadol )

Two Paracetamol - 5000MG -

every four hours and set my alarm on my phone so that I remember to take them regularly so my pain doesn't have the chance to take over!

I find find that I don't suffer the pain as much as although it doesn't actually take the pain away It seems to mask it.

I also take Amitriptyline -

which helps me sleep, along with

Omeprazole -

which looks after my stomach as taking so many meds can cause stomach inflammation.

I visited my GP yesterday who has agreed that this combination is the best way to handle my FMS and because I am coping with this combination doesn't think I need the pain clinic.

It's all trial and error and think that a routine taking the meds is better than waiting until we are in such pain that nothing seems to help.

Good luck sweetheart - hope you get a little respite from this awful illness...

Gentle hugs

Ren Robin...xxx

josie46 profile image
josie46

I am not taking any medicine as i was on Ami and started taking 10mg a day but increased it to 40mg over a period of four weeks plus but it had no effect on me at all, did not help with pain or sleeping.

Most medicine we are given does not help and if it does it s not for long. I go to the pain clinic and had a edipurdil in the neck but it has had no effect at all. Constant pain, blurred vision and tingling in whole body. I am going to try swimming to help with pain as they say exercise will over a period of time help with the pain.

joed profile image
joed

hi pituxa i take gabapentin and amatriptalin max dose of both i have to be honest they dont ever take the pain away and am waiting an appointment to have injections in my leg joed

Tendo profile image
Tendo

Amitriptiline did nothing for me at all. I take Gabapentin, Zamadol, Tramadol and Co-Codamol, which only really take the edge off the pain.

However, I found out by chance, that 5mg Diazapam helped. I had no stiffness or pain for a couple of days, after taking it recently.

Pituxa profile image
Pituxa

Hi, thanks to all that replied to my question.

I've been diagnosed last July and when the GP gave me the Lyrica 300 mg day + tramadol SR 150mg 2 day + Arthrotec 50 2 day + paracetamol, I felt that I was 80% better than I was before I even started to look for work. This feeling better sensation lasted until I was on my second month of my new work, of course until then my Lyrica was increased for little by little.

Now nothing seems to be working. I'm on 600mg day of Lyrica, 200 mg Tramadol SR, Arthrotec 50, and amitriptiline 20 mg at night, but I'm feeling very very drowsy in the morning. I feel that everything is going around me and I'm not there. Yesterday I decided that I'm going to stop taking the amitripitiline (sorry for the typos) because I can't live like that, like a zombie. Of course today I didn't sleep. I ve been awake all night. Rolling in the bed with so much pain that I couldn't stand. When I'm standing I feel so dizzy that I have to hold on to something, otherwise I will fall.

Last GP consult did my blood pressure and when I stand it was 8 / 10. He said it was very close and it was probably why I was feeling so dizzy. He said that because I am on maximum dose on 2 meds (Lyrica and tramadol) I should go back to the tramadol 150mg and start increasing the amitriptiline little by little. I don't like this last med because it makes me feel very drowsy , like a zombie. I spend all my days laying down or in bed. Its very difficult to wake up in the morning. I end up getting up around 3 or 4 in the afternoon and even then I feel like a big car went over me.....

I've been refered to the Occupational Health from my work and I'm feeling very anxious about it because I feel I'm going to loose my job. I started in January and since the beginning of May I've been off sick!!!

today I'm going to my GP to request more sick note because I'm not feeling able to do my job. I'm a social worker which involve lots of reports, home visits, driving around, sitting on the desk.... well I can't think, I can't evaluate anyone while feeling like this....

I graduated in October 2010 and I was working, but then after some months I become ill and I was off sick without any diagnose until July 2011 when the doctors diagnosed the Fibromyalgia. I lost that job in April 2011 before the diagnose, because I was still on probation and now I feel that this will be repeated.... I'm still on probation and I'm already on sick leave!!! this adds to my anxiety and the fibro keeps flaring up!!

the problem is that for many this is an invisible illness and we are judged very often as being lazzy, not wanting to go to work.... All I want is being normal, being able to run with my children, play in the garden without feeling that I'm going to fall or with so much pain that when playing I have tears in my eyes....

I'll let you know what happens when I return from my GP.

Cheers

Pituxa

renrobin profile image
renrobin in reply to Pituxa

So sorry Pituxa, you sound so desperate...so wish someone could come up with a cure...

My daughter has been referred to Occupation Health at her work and it's the best thing to happen to her - they have put her on a structured return so she starts goes to work on alternate days and starts late and goes early. They have also referred her for counselling which she's finding very helpful.

She had a Thyroidectomy earlier this year and still is not fully back at work as the specialists think she has either FMS or ME. Needless to say she was worried for her job - but once OH is on your case they cannot sack her.

I hope you have sympathetic HO and it would be good if you took along the Fibro information pack to back-up your symptoms.

Good luck sweetheart and let me know how it goes...

Soft and gentle hugs

Ren Robin...xxx

chilli50 profile image
chilli50 in reply to Pituxa

Hi Pituxa

I just wanted to say that i had the same problem with amitryptilline. It left me like a zombie and with a 1yr old ( at the time) that was unacceptable so i stopped taking them. Recently i have started taking them again, starting at 10mg and now 20mg a night. I was advised on here to take them at least 12hrs before you want to get up, e.g. If you have to be up at 7am, take it at 7pm at the latest. I take mine at around 3-4pm and find they dont hang over. It also has the advantage of making me more likely to be ready for bed by 10pm. I am lucky in that i CAN sleep, although i go through phases of being an insomniac which isnt helped by medication. I also take kalms as they help me relax slightly. If you try taking your amytriptilline in the afternoon, hopefully you will feel less like a zombie the next day. Let me know how you get on...

Gentle huggles

Chilli

Pituxa profile image
Pituxa

Hi again!

I returned from my GP with new medicines and a referral for physio.

I've been goggling around and came across a med called SAVELLA (milnacipran), which despite the bad initial side effects seems to work very well for fibro suffers. Unfortunately is not available in the UK!!!!

Instead he prescribed Citolapram and changed my Arthrotec 50 for Naproxen.

He asked to see me again within 2 weeks to see if there is any progress.

I'll keep u posted!!

Gentle hugs for all of u.

Take care

Pituxa

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