Wanted to know about various treatments people are receiving please.

[cincin]

Hi everyone, just joined for advice, fed up now, had this for over 20 yrs, been misdiagnosed for yrs now, only just been told it could be Fibromyalgia, not on any medication at the mo, just about 30 painkillers a day, just wondered if people could tell me about medication you are on, so i could ask about it myself, god knows i need something.

[jazher]

Hi cincin,

Its lovely to meet you, Its awful that you have been misdiagnosed for years.

I think you should find a doctor who knows about fibro and conditions like it.

I am on amitritplyn for to help me sleep at night as i have insomnia, some peole take it through the day too to help with pain.

I am on gabapentin for nerve pain as my cocdamol was just not working, as most painkillers wil not help with pain with fibro.

Some anti depressants work well too.

Have you not been offered anything to help, have you seen a specialist of some kind?

There is lots of good advice on here and some lovely people, i just dont know what i would do without it.

Hugs, kel xxxxx

[cincin in reply to jazher]

thanks for your reply, amitripyline seems to help me through the night, never thought of taking it in the daytime as well, but then again, i'm up at 4am for work so don't know how i would get on with that, might be worth a try though, that is the only thing my rheumy has offered me, along with a visit to the pain clinic, i'm pinning alot on this (as usual), just hoping i actually get somewhere. Thanks again for your help, its nice to talk to someone that understands. xx

[jazher in reply to cincin]

Generally pain clinics are quite good at trying differnt meds for you.

I would definatly ask about the gabapentin though as it is really good.

I dont take amis through the day as it makes me spaced out and i have kids so i cant be like that but somedays i wish i was spaced out when the pain gets so bad.

Good luck at the pain clinic and let us know how you get on.

hugs, kel xxxx

[nuttytartuk2003 in reply to jazher]

Hi cincin, I was recently looking for a fibro specialist in the greater manchester area, I noticed your from preston area, there is a specialist in bolton, I know it means you travelling but its not that far from you, anyway ask your doctor to refer you to....

DR.K.ADAMS Rheumatology dept at BOLTON NHS, LEVER CHAMBERS CENTRE FOR HEALTH,ASHBURNER ST,BOLTON,BL1 1SQ THE FIBROMYALGIA CLINIC. TEL [phone]

If he won't refer you, you can complain to the practice manager, your entitled to the correct treatment, don't let him tell you he cant refer you because he can.

hope this helps, Irene x

[nuttytartuk2003 in reply to nuttytartuk2003]

Ive been told he's really good, could be a different doctor now though as this was a couple of years ago but they still have the fibromyalgia clinic x

[nuttytartuk2003 in reply to nuttytartuk2003]

also I've read on a forum that blackpool royal victoria run a fibromyalgia course to manage symptoms x

[cincin in reply to nuttytartuk2003]

Hi Irene, that was going to be my next port of call, if i don't get anywhere with the Pain Clinic, then i'm going back to my doctor to ask for a referral, good to know there is one in Bolton, your right, it's not that far from me, thanks for your help, much appreciated.xxx

[cincin in reply to jazher]

Hi Kel, I am pinning alot on this Pain clinic, trouble is, there is a waiting list, and my Rheumy "forgot" to send off my referral, which means I have even longer to wait! Not funny when you are in constant pain, have a child to bring up and up at 4am 5 days a week for work, I will let you know how I get on, fingers crossed I won't have that long to wait, thanks for your reply, it's much appreciated.xxx

[cincin]

Thanks for your response, I have been seeing a Rheumy for about 3yrs now, it was her that diagnosed me with this, i was injecting myself with Humira for Psoriatic Arthritis before this, but she took me off it all saying she thought it was fibro, and that this would do me more harm than good, now i'm left with useless painkillers that don't even really take the edge off, just take them out of desperation, i'm taking co-codamol, dihydracodeine, ibuprofen paracetamol, and arcoxia. Waiting on an appointment to see the painteam as thiey specialise in this field, hence the research. Thanks again.xx

[jayjay]

Hi cincin, and nice to meet you. I was put on Tramadol by the rhuematoloigst, 7yrs ago, and still takeing them along with paracetomol, i also have another painkiller in the middle of the day and also ibuprofen 400mg, i take 2 x tramadol morning and nite,also if i need it i take 2 in middle of day, but it only seems to take the edge off my pain, good luck for tomorrow xxx

[cincin in reply to jayjay]

Hi jayjay, i've heard of Tramadol, what kind of drug is this, is it a painkiller of some sort? xx

[SuzySparkle in reply to cincin]

Hi, I have been taking tramadol for over 10 years, for neuropathic pain caused by a spinal bleed. It is a synthetic opiate, and can be a really good painkiller, but whilst not addictive as such, I have developed a dependency on it and my pain clinic consultant thinks it isn't working anymore. (I also take gabapentin) I have been trying to 'get off' tramadol since February, and it has been pretty hard going as the withdrawal is similar to coming off an opiate addiction. It does have more side effects than Gabapentin too - one main reason for coming off it! You can get severe headaches from taking tramadol and this was happening to me - so worth a try, but with open eyes is a good idea.

[Hidden]

hi and welcome you have been suffering but it has been going on too long now i would change your GP for a start ans talk to someone new write all your story down if it too long jus bullet point it and hopefully fresh ears will get you the diagnosis you need and also the medicatuon to help with all the pain 30 pain killers a day is alot love to you diddle x

[cincin in reply to Hidden]

Hi diddle, (cool name by the way), i agree it has been going on too long now, all i ever wanted was a better quality of life, that was 20 years ago, and now i'm worse than ever, i'm waiting to see if the Pain Clinic can do any better by me, if not, then i will be going back to my Doc and telling him to refer me to someone that knows what they are talking about, thanks for your advice, its a great help having someone to talk to that understands, hope your well.xx

[Hidden]

Hello Cincin, I take 75mgs Amitriptyline, and I've also been prescribed Co-Codamol which I can take up to 4 times daily. For pain that I cannot keep under control I was prescribed Methocarbamol, 2 x 750mg tablets up to four times daily. I only take the last medication when I really cannot cope with the pain which thankfully is not all the time, about once a week, sometimes twice. At the very beginning before diagnosis, I was taking a fistful of painkillers which weren't helping at all. I've been down the Tramadol route and it didn't help me at all, I find the Amitriptyline really helps me, the only side effect being weight gain unfortunately.

I personally think you need to have a firm diagnosis Cincin and also to have your meds reassessed. You are taking a heck of a lot of painkillers, a real cocktail of pills. I am sure once you have your diagnosis and get the correct medication, you won't be taking anything like the quantity you are now. Best of luck, we are all here for you.

[cincin in reply to Hidden]

see, I have been on cocodamol since the beginning of time, them alone cause you a whole new set of medical problems, but when i complain saying the painkillers are not doing much for me, they just up the amount, I first sought help from a rheumatologist because i was concerned about the amount of tablets i was taking a day, and they have just double my doses over the years, now more joints are affected and i have other problems to go with it. You all seem to be on something other than just painkillers, yet i'm told, i just hav to learn how to manage my pain, well thats what i have been doing for 20years, I need something more than that, thats why i joined this group, so i am fully armed when i get my appointment through, thanks for your advice, its been a massive help, Good to know there are people who understand my daily struggle.xx

[Fificat]

Get some help coming off those pain killers IF its Fybro they are less than useless and can make things worse. I take low does Amitriptilyn 25 mg and Gaberpentin 300 mg twice a day which are much more effective for Fybro. they took a fair few months to really kick in though so you have to be patient, not easy when you are in pain.

Personally, I find acupuncture along with massage of the myofacial tender points to help me most with pain managment. I had to pay for this privately BUT there are charities who help or if you are a member of a trades union? I got a course funded and its really helped my pain levels. Leaving needles in the lobes of the ear on the analgesic points helps between treatments.

Also ask your NHS physio for a 'stepped exercise programme'...getting phycially fitter is so important in the fight against Fybro but you need to do this really SLOWLY to avoid flare ups. Get advice.

[cincin in reply to Fificat]

What are Gaberpentin? I've heard this name a few times, and thats another thing, when my Rheumy first checked me out for fibro, she checked my "tender points" and they wern't that tender! But has carried on down this road anyway, i also went to physio not long ago, but she got carried away and gave me 360 exercises to do daily, 3 times a day, not good really, especially on bad days, wen you couldn't move that well anyway, i find amitriptilyn help me sleep well at night, so they have got something right, but that took a while, patience is something i do have, i've had no choice, thanks for your advice, its a massive help. xx

[cincin]

I think that maybe i do have both, but because i don't seem to ever have had any inflammation, my Rheumy totally rules out Psoriatic Arthritis, I don't believe this to be true, when she tested my tender points, the ones for Fibro, i didnt seem to have much pain there, they were not tender! but yet i can't move my arms away from my body, my knees are in agony, along with my elbows, fingers, wrists and now my lower back seems to be flaring up, which is new to me, but because I am a strong person, and i don't like asking for help, and i still drag myself out of bed at 4am to work despite hardly being able to move, they do not take me seriously, i try to still carry on as normal, otherwise i feel i would be giving in to my condition (whatever it is) and letting it win. Thanks for your advice, its a massive help. x

[Fificat]

Gaberpentin or the newer Pre-Gabalin (sp?) work on the nerve endings that transmit pain..they work in a different way to say Opiates and are far less addictive. Not sure where you live but 360 exercise is just plain stupid. You need to do a stepped exercise programme similar to the one they do at the 'Input Clinic' as St Thomas' Hospital in London. You don't say where you live. St Thomas' do do a free NHS residential Programme for two weeks to teach you all this if you can't find it locally. You will need a GP referral though.

This is how a stepped programme works. First you take the base rate that an inidividual can manage for any given movement. That is something that you could manage on even your flare up days. If that is say walk three steps..then that becomes your base rate. Each day you increase this by one so that its imperceptible and you write it down. at the end of a month you will find you are walking quite a way and so on. Its about increasing fitness and mobility by tiny amounts each day.

It does work as I could only shuffle with a walking stick at one point and now I can walk 5 miles without a stick on a good day. Keep fighting.x

[cincin in reply to Fificat]

I live in Preston in Lancashire, I stopped going to my physio, because she was so patronising, making me feel that i was just making it all up, she got me to stand up and show her how much movement i have in my shoulders, told me to stretch it right out and point to the ceiling on both arms, it really hurts to move my arms away from my body in the first place, i can only get it so far before the pain kicks in, it feels like my arm is being snapped off, when i just got it out in front of me, i said that was as far as I could go, she said "and why is that" i said because it is killing me now, there was no build up, she made me do it to the point were i was practically in tears, then told me that if i wanted to get better, i had to do 5 different exercises (15 of each ) 3 times a day on both arms and the same for my each leg, when i said this is far too much for me to cope with, she just that is what is needed if i wanted to have any sort of relief from this, i thought this was a bit of a joke really seeing as the reason i was there in the first place was because of the amount of pain i am in when i move, because i have had this for over 20years, i have learnt to adapt and do things differently to other people, like if i need to reach up for something, i use my other arm to help lift my reaching arm, that way i'm not using the joint/muscle myself, i established a long time ago, that if someone else was to lift my arm right up whilst i was relaxing it, it won't hurt at all. Wish i could live on steroids, i'm like Bionic woman then. Thanks for your advice, its all appreciated, Cindy.xx

[soulsusie in reply to Fificat]

In the case of myself I have Gabapentin for neuropathic pain.