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The UKFibromyalgia Forums • View topic - HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND



HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

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HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby tim48 » Mon Aug 18, 2014 5:36 pm

HI HAVE JUST BEEN DIAGNOSED WITH FIBROMALGIA , SEEM TO GET PHASES OF PAIN , TIRREDNESS ECT , CAN ANYONE PLEASE ADVISE WHAT IS THE OUTLOOK AND ANY HELP. THE DOCTOR HAS PUT ME ON AMITRIPTYLINE WILL THESE HELP , AM FINDING IT HARD TO UNDERSTAND HOW MUCH THIS COULD EFFECT MY LYFESTYLE , PLEASE ANY ADVICE WOULD BE WELCOME CHEERS TIM
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby hazely » Mon Aug 18, 2014 5:45 pm

Hi sorry to hear of your diagnosis, but glad that you finally have one as the not knowing is worse than knowing. I was put on amytriptaline but had to come off them due to severe side effect they don't suit everyone but many people take them without any issues.

I find fm affects me everyday I am unable to lead the life I had before, even simple tasks are a struggle. It is like all illnesses it varies from person to person and hour to hour. One minute I feel ok them wham the next minute I feel like ive been run over by a bus. I found the best source of information is to research and look on the forum as we are all in the same boat.

Hope you find some relief with the meds
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby gerksmo » Mon Aug 18, 2014 5:56 pm

Hey Tim, this is the first time I've ever had the courage to respond to anyone on this site, so bare with me. I was diagnosed a few months ago and it's a pretty lonely place to be. I've been given so much medication over the last 5 year's but the one thing that really helps me sleep is Amitriptyline. It has lot's of side effect's and isn't right for everyone but that said I can not have a good nights kip without it.
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby juejue » Mon Aug 18, 2014 6:04 pm

Hi Tim,
It is a bit confusing as it does seem to affect everyone differently. Have you been diagnosed by a consultant or your g.p? I only ask because if you haven't seen a pain management consultant they can be a great help. I take amitryptaline and it helps with my migraines and sleep. The main side effects for me are a dry mouth and drowsiness the next day. I find pregabalin helps a lot with the pain, has this been mentioned to you? If you can find out if there is a pain management course ran by your local NHS , I found this helpful as they teach you about, stretches, pacing and relaxation which makes a big difference. I am lucky in that I am able to work and adjustments such as a therapod chair, split keyboard and roller mouse have helped. Fibromyalgia does fall under the dda so work should make reasonable adjustments for you. My pain and fatigue happens on flares it's there at some level all the times but gets worse when I am stressed or cold.
Hope this helps
Julia
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby smig » Mon Aug 18, 2014 6:11 pm

Hi, I am was diagnosed with this often debilitating health issue only 5 days ago by my rheumatologist. I have to agree with Hazely, the not knowing for me was the worst thing, I try to be as positive as possible, not too easy sometimes I know lol.
I am on 40 mg of Amitriptyline and 400mg of Tramadol daily but still wake with all the usual aches and pains in every morning.
I think it must take a while to find the right combination of meds that work for you

Take care

Steve :-)
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby tim48 » Mon Aug 18, 2014 6:14 pm

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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby rich44 » Mon Aug 18, 2014 6:17 pm

Hi Tim

To such a varied problem for all of us. I use FibroMapp an app on my phone to keep records to pass to my Dr.

If they've only offered ami and you're in pain then push for referral to the local pain clinic. They seem over worked so there'll be a wait. You could also push your gp for a referral to a rheumatologist too.

Try to get as many balls rolling now as the NHS is not quick with these things sadly.

Many of us have had lots of different drugs so ask away if there's any questions. For me the pathway has been

Paracetamol
Cocodamol 8/500
Cocodamol 15/500
Cocodamol 30/500
Dihydrocodeine 30mg tabs
Tramadol 400mg a day
Nefopam
Amitrypyline (bedtime)

Often anti-depressants are used for neuropathic pain to such as

Duloxetine
Paroxetine
Citalapram
Fluoxetine

Some find they help with the pain some don't.

There's also things like muscle relaxants like baclofen.

The epilepsy drugs gabapentin and pregabalin (lyrica) also can help with the pain too.

Often it's a case of trial and error to see what helps, what's strong enough, what's not enough etc.

The trick is keep seeing your gp until you can get a handle on it. If he/she's not helpful try another one and keep at them.

Vitamin D is sometimes overlooked, have you had it checked?

The big thing that the pain clinic will also tell you about is pacing, make sure you don't push through your limit because you'll crash & burn afterwards.

The good thing is there's lots out there now compared to even 10 years ago.

Good luck with everything
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby Miichelle » Mon Aug 18, 2014 6:24 pm

I am also fairly recent in my diagnosis too. My medication daily is

PROPRANOLOL 40mg
LEVOCETIRIZINE 5mg
DOSULEPIN 75mg
PRAMIPEXOLE 0.176mg
FLUOXETINE 60mg
TRAMADOL 400mg
ATARAX 100mg
MEBEVERINE 405mg


I find accepting and living with, rather than being a victim to it, helps me through each day :-)
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby Jiz16 » Mon Aug 18, 2014 7:12 pm

Hi Tim, As People have said the not knowing is as bad as knowing, Fibro is definitely life changing, if you have a facebook account then go on there and type in fibromyagia as there are lots of groups that will answer any of your questions and make you realize you are not alone there are thousands of us x hope u get on ok and make sure u get the right medication, im on fentanyl patches amitripyline naproxen and dihydrocodiene i also have IBS and CFS :sleep: which is another part of Fibromyalgia
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby FluppyPuffy » Mon Aug 18, 2014 7:50 pm

:welcome: to our little FibroFamily Tim. I've moved you over on to this board with this being your intro topic, as it's a more suitable place for people to say Hello :cow-wave: :cow-wave: :cow-wave:

Can you not post using all capital letters please. It's something that we ask of all members. Using all capital letters is the t'interweb equivalent of shouting and can cause all sorts of misunderstandings when someone, for whatever reason it may be, takes it to be personal.

Learning to live life with FM takes time and patience, and taking each day as it comes it what most of us tend to do, esp in the early days of being dx'd.

It's difficult to say what the outlook is for someone as, altho we share a range of symptoms and problems, FM affects us all very individually. You could be fortunate and quickly find the right mix of meds and treatments that help you manage your condition for a good while, or you could find it takes quite some time to find the right cocktail and balance for you, with anything else possible between these points. It is still possible to have an enjoyable life with FM, so try to keep that at the front of things. Admittedly it may not be quite the enjoyability that you envisaged, but once you have found your capabilities with FM in the mix, there is still :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

With us being affected so differently, we tend to have our own little twists on how we do things, so if you can give us some more specific ideas about the sort of advice and in what areas you are looking for, then we might be able to come up with some useful suggestions for you. You could also try using the Search box in the top right corner of each page and see what comes up in previous topics.

Amitriptyline tends to be one of the first meds used when FM is dx'd. Altho it is an older style anti~depressant, it has been found that at lower dosages it can help with sleep and pain issues, and for some it can be quite effective in helping them. It needs time to build up in your system and take effect, which can be a month, or sometimes a little longer before effects start to be felt. And sometimes the starting dosage isn't quite right for helping, so again a litte time and patience are needed to find what helps you. The best thing to do is give them a go, let them have time to build up and take effect, and see how things go.


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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby Lydia6dg » Mon Aug 18, 2014 8:12 pm

Be really careful with Tramadol they can be addictive, make m so irritable I have had fibro for almost 20 years n I can tell you its doesnt get any better . been in a massive attack for months , affecting all my nerves , had to go to court to try n win back my DLA care part , a real court with a judge , talk about traumatic, then my case was postponed due to the guy in front of me over running , so gotta do it all again , dr had to give me Valium to help me be calm , paracetamol n codeine dont work , , listen to your body if you have to sleep then sleep , dont do too much n learn to rest oh and another thing you lose You ...your life will never be the same again , I have lost so much my hobbies n my business due to fibro , take care x
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby Lydia6dg » Mon Aug 18, 2014 8:13 pm

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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby migrembe » Mon Aug 18, 2014 8:23 pm

You don't have to use medication although some simple pain killers may be useful until you can get your head round it all. Every medication i have ever been given have caused side effects that i have had to stop them after a few weeks or months. You could look into alternative treatments such as meditation, acupuncture or even yoga or tai chi but you will need to begin anything new very slowly. The pills have never taken away the pain or the fatigue and now i only take cocodamol 30/500 x2 up to 3x a day.
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby Tally1068 » Mon Aug 18, 2014 9:29 pm

:-D Hi Tim.
Finally getting a diagnosis can affect us in different ways. For a lot of us it's such a relief to finally know after years of feeling awful that we're not hypochondriacs but have a genuine illness. Others may be scared and horrified that we have something that cant be cured, just adapted to.

But look on it as the start of getting control of your illness by finding out as much as possible about it. It's not a death sentence, far from it, and it's different for everyone. (Lydia6dg asking why someone is on so many meds is pointless. 8-) What works for one and what each person needs are very different) The one thing about fibromyalgia is it's different for everyone. Some people will be able to do things much as before with tweaks to cope with pain and exhaustion. Others will realise that their diagnosis confirms that there's a reason why they've felt so awful and that major life changes have to be made.

But the one thing I felt was relief. You can begin to educate yourself on all aspects of this disease. Reading up on others' experiences and how others cope. Remembering all the time that everyone is different. What works for one person will cause problems with another. Working with your GP or Rheumatologist to find what works for you. You can participate in understanding this unwanted condition. To me that's a lot better than carrying on blindly as I did in the 4 years pre diagnosis searching for a reason but not getting any answers.

I'm not going to repeat what others have said. Personally I swear by tramadol, but someone else will warn you off them. It's what works for you that's important. It's finding out how to best cope for yourself, that's going to be the most beneficial.

There is so much to read and learn just on this forum, that I hope your initial alarm and upset at getting diagnosed can be channelled into finding out as much as possible about it so you know what you're in for.

All the best, It's not the greatest thing to have ( a massive understatement there) but you're not alone. :-) :-)
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Re: HAVE JUST BEEN DIAGNOSED . NEED TO UNDERSTAND

Postby Miichelle » Mon Aug 18, 2014 10:11 pm

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