just diagnosed, now what?

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just diagnosed, now what?

Postby reb1981 » Fri Dec 12, 2014 12:10 pm

Hello, I have just been diagnosed about an hour ago, what now? I have had it explained to me and been told how it is best to take things easy and not over do things but try to do something to keep me supple. Try not to rely and tablets, and learn how to manage the condition. Is that it now I just go away and deal with it?
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Re: just diagnosed, now what?

Postby sandibach » Fri Dec 12, 2014 12:43 pm

You've got off to a good start by joining this group.... You'll get help, advice and support from fellow sufferers !
I was diagnosed last year, all he said to me was ... You've got 'FM' ... Here's a booklet on it, go and read it !!
But thats Lincolnshire for you'... I did my own on line research ( mainly USA sites) but on here i've found peeps that have tried and tested various medications and share their experiences with side effects etc
But there are always people on here who've been living with it for years who will give support on your lowest days !
So keep positive ... Sit back .... Have a look at previous posts .. And welcome to the forum family !

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Re: just diagnosed, now what?

Postby hazely » Fri Dec 12, 2014 12:48 pm

well you have had more info than I had no leaflet no info just you got fm and left me to it. join lots of groups and speak to like minded people always helps. Grieve your old life and embrace your new one
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Re: just diagnosed, now what?

Postby babydave » Fri Dec 12, 2014 12:55 pm

I too am in lincolnshire,I saw a rheumotogist who said 'you have fibro and I'll recommend your gp prescribes amitrityline and i will discharge you from the clinic'. .
At least you got some advice!
Read up as much as you can and try not to let it beat you also don't expect too much of yourself,listen to your body! If I'm tired then I sleep but I'm not inactive ,I walk 2 miles to work and the same back on working days sometimes I take longer others but I keep myself moving and that's meant to be better than not exercising.

This group is good for advice and support (although I lurk and read mostly) ,stay positive. :)
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Re: just diagnosed, now what?

Postby Kristy Wilson » Fri Dec 12, 2014 12:55 pm

You now need to get to grips with how you are going to deal with this on a daily basis. My pain is quite severe most days and I'm on a lot of meds for it. Try and pace yourself and not over do things. If you need to rest have and rest. It's your body's way of saying you need to sit down. You need to learn what triggers your flair ups. I've only been diagnosed for a few months. One of my triggers is the weather especially when it's raining. Unfortunately I need to use crutches every where I go as I can barely walk and sometimes I need to use my electric wheelchair on especially bad days. You would be best to Google fibro and do some research on it so you are better informed and there are fibro websites like this one that you can and ask for advice or just to have a rant. We are all here for you so please don't think you are alone. The one thing I have found with these groups is we are all one big family and support for eachother no matter what. Hope this helps and try and keep your chin up. The biggest thing I have had to learn to do is say no! I used to be are independent person but this disease has robbed my of that and I now need help on aren't daily basis. If someone has asked you to do something and u can't say no. Don't try and push yourself. It's hard trying to adjust to this new life and I'm still struggling to come to terms with it. Just remember we are all here for you.
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Re: just diagnosed, now what?

Postby Gingermama » Fri Dec 12, 2014 1:30 pm

I would also look for local support groups and also talk to your local citizens advice bureau for advice on benefits etc.

It is a lot to get your head round. I was diagnosed a few weeks ago and have been researching online and finding Facebook groups which give good advice and support.

Lots of luck xxx
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Re: just diagnosed, now what?

Postby reb1981 » Fri Dec 12, 2014 2:04 pm

Thank you. You can claim benefits for this condition, I didn't know that. It is very hard to explain to people what and how you feel when you suffer with this. I struggle to open jar lids and find gripping difficult sometimes. I can't drive for long anymore as my hip starts to really hurt. My boyfriend does a lot to help me around the house and now does most of the driving for me.
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Re: just diagnosed, now what?

Postby baldrick » Sat Dec 13, 2014 12:09 am

Once i was diagnosed i became a lot happier, i knew now that i was not dying. This was a couple of years ago, and i have had many good months, med free, and also months when a mix of meds to stop an elephant wont stop the pain and i still cannot sleep. I am never totally pain free, and never symptom free, but at times it is totally manageable.

I started to get worse again last month, and the symptoms are increasing by the day, as are the meds, tramadol, gabapentin and naproxen. However i think things have peaked and are stabilising now.

I find that sitting in a chair watching tv is the worst thing i can do, so dont give up, keep working and active if possible. I like to have something to look forward to, waypoints as it were. So a meal out, a day out, christmas, whatever. I need to have something no matter how small to plan for, think about and look forward to.

If i have a really hard shift at work, (fire fighting) or do anything to active i can be whacked for 2-3 days, but still manage, and it just a matter of keeping going, easing down the meds when possible and being ready to ease them back up.

Finally have a good dr, mine is great, he understands and is happy to discuss the meds to make a decent balance for a big bloke.

Hope this helps

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Re: just diagnosed, now what?

Postby dazzleship » Sat Dec 13, 2014 8:59 am


you have been given some good advice there, especially about not relying on pills which in my view is a good thing.

joining this forum is a good step. there are lots of people on here willing to help or just to talk things through or even just say "yeah I get that too" and put your mind at rest. I've found this place really helpful since I've been here. there's nothing like talking to people who understand what you're going through. :-)

the key is to come to terms with it. that's something we all have to do and personally I found it hard a few months ago but I've "turned a corner" as it were and I feel much better about myself now. I've learned to accept the fibro and not fight it anymore, cos you'll just exhaust yourself.

yes, things will have to change in your life (but I can't say how much cos we're all different and fibro affects us in different ways) but if you know that that is the case, you will hopefully find it easier to come to terms with it cos you'll be prepared, you know?

good luck :hugs:
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Re: just diagnosed, now what?

Postby Theresa34 » Sat Dec 13, 2014 7:56 pm

Reb when I describe my fibro flares I tell people its like having really bad flu with a lot of pain on top of it. I'm coming out of my longest flare which lasted around 12 days. They usually last three days. I was diagnosed a few months ago. I'm a mum to 3 kids and need to keep them going as well as looking after the house. I generally manage the fibro easier than during the flare ups. I see a rheumatologist for my fibro and arthritis. He makes sure that I have the right meds to keep me pain free although during flare ups the pain is generally worse. I try to keep as active as possible. I'm 35 and not ready to sit and watch the world go by. I've looked into benefits but I'm not entitled. Seems like you have to be practically bed bound to claim benefits! I'm not even going I try, can do without the stress.

Take care x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: just diagnosed, now what?

Postby denys » Sun Dec 14, 2014 4:33 pm

Hi and :welcome: to the forum :cow-wave:

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: just diagnosed, now what?

Postby reb1981 » Mon Dec 15, 2014 8:31 am

Thank you for all your replies, I don't feel so alone now. I still feel a fraud because nobody can see what's wrong (like a broken leg), I also have bipolar and nobody can see that too. I can only walk about 200 metres before I'm having pains, my legs start cramping and I just can't go on but I am forcing myself and not sure if that's a good thing as I end up in a lot of pain for quite a long time after. I got diagnosed private and he is writing a letter to my doctor, is there anything I can be referred to on the nhs to help me cope and understand better or are you left on your own to deal with it?
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Re: just diagnosed, now what?

Postby *Lisa* » Mon Dec 15, 2014 1:28 pm

It can be a post code lottery. You will need to ask what is available to you in the area you live in.

Some people have the option of hydrotherapy, some can go on a pain management course, some can be forwarded to a specialist hospital and be an inpatient for 3 weeks where they have doctors, physio's, dieticians etc to help (rare and mainly given to people who have been suffering for decades and have tried everything to no avail)

You can ask your GP to see about a therapy called CBT its techniques in how to manage pain, cope with symptoms, find out the triggers and help pace etc...

Where i live there is nothing. The physio department was abolished! and now they rent a room in a health centre and only offer a 6 week course on stretching exercises. The hydrotherapy pool was demolished to! funding is short here even tho i live in a built up area.

The help i have had along my 15 years has mainly been funded by myself. Things like massage, trigger point therapy, counselling / CBT / Hypnotherapy / Alexandra technique etc...

Your GP can forward you to a pan clinic, they tend to have more resources like pain injections, lignocaine infusions and have the authorisation of prescribing more powerful medications to help with the pain. They can also forward you onto therapies and courses.

Trouble is (or maybe just were i live) is that to get refered to a pain clinic your GP must have exhausted all areas themselves before referal. This can take alot of time before referal happens but maybe different where you live.
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