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The UKFibromyalgia Forums • View topic - Newly diagnosed - in my early 20s but feel like 80!



Newly diagnosed - in my early 20s but feel like 80!

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Newly diagnosed - in my early 20s but feel like 80!

Postby BlueBell1 » Thu Jan 26, 2012 4:04 am

Hi everyone,
I don't generally post on forums but I'm so fed up just now that I thought venting to some nice folk who understand would help!

I was diagnosed with fibromyalgia secondary to joint hypermobility (I think! It was a lot to take in!) by a rheumatologist last week after 10 years of bouncing between orthopaedics, endocrinologists etc etc! It was amazing to spend 10 mins with a rheumatologist and be told so confidently that he knew what was wrong after so much umming and aahing by various consultants.

After my initial elation at FINALLY having gotten an answer, I've hit a real downer about the whole thing that has brought on a flare up. I have barely slept in the 10 days since my diagnosis despite trying to follow advice and get into a routine, I've tried everything - baths, milk, reading, rescue remedy etc. plus my nortriptyline, which is having zero effect (be patient I know!) it's 3am at the moment, I need to be up at 6 to go to a training day and I already know its not happening.

There's no way I will be able to physically drag myself up. I hate always having to cancel things because I never know until the day how I will be feeling! I have a new(ish) boyfriend who I've not seen since my diagnosis, I keep making excuses, I'm just too tired and to be honest don't feel like talking to anyone.

At the moment, both my hips are so sore I cannot lie on either side, but I also feel like my shoulder blades are being stabbed so I can't lie on my back! Add to that a radiating pain from my collar bone and extreme exhaustion/heavy muscles and I'm pretty miserable! I feel so old before my time!

Does anyone have any tips for living with this? Hopefully I won't always feel so down about it! Has nortriptyline worked for anyone? I'm also waiting on a physio referral.

Thanks for reading :)
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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby FluppyPuffy » Thu Jan 26, 2012 10:05 am

:welcome: to the forum BlueBell :wave: :wave:

What you're going thru and feeling at the moment is something that most of us felt when we were told we have FM. At first there's the initial relief that there is a name for your problem, but then as the realisation starts to take hold as to what having FM can mean, it does start to drag you down. Hopefully tho, now you've found us, we'll be able to advise and support you with things you need and want to know.

I'm a Nortriptyline taker, after being swapped onto them a couple of years ago when amitriptyline started to cause me problems. I've found it to be more effective as well as having less side effects for me. It took a while to find the right dosage for me (60mg at night) but so far they are helping. It's not the ultimate cure all tho, just another ingredient in my current cocktail of meds that mean I can get out of bed.

Don't be too hard on yourself because you haven't found the right routine for yourself just yet :grouphug: :grouphug: One thing you'll find with FM is that there is a lot of trial and error needed to find what is right for you. As were all affected so differently, what helps one of us may not do the same for another. Maybe if you try finding the right thing with one part of your routine at first, and when you're OK with that one, try adding another aspect into it, you may start to get things falling into a routine for yourself :fingerscrossed: :fingerscrossed: :fingerscrossed:

For any things you want to know, there is a lot of info and advice on here, plus you can ask about anything on your mind and we'll try to help you with an answer :mrgreen: :mrgreen: :mrgreen:


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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby Roseofsharon » Thu Jan 26, 2012 11:07 am

Hi bluebell, I was diagnosed nearly a year ago now and to be honest I'm still trying to find the right cocktail of meds. I cannot really add much to what Fluppypuffy has already said.

The one thing I would add though is that I understand the need not to talk right now, the diagnosis can be hard to take in. However the longer you leave talking the harder things will be in the long run.
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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby shazq » Thu Jan 26, 2012 3:51 pm

Hi Bluebell :welcome: to the forum :wave:

We have lots of info on the forum, it does take time to get your head around it, just take it slowly day by day.

A memory foam mattress or a foam topper are a big help for pain and stiffness or even put a duvet under you sheet which might help the pain in your hips. Other things which might help are a Tens machine, hot water bottles, heat pads and wheat bags.

Having an understanding GP makes a big difference with fibro as it can take a while to get the right combo of meds so dont give up if the first meds dont work there are others to try.

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

Any questions just ask.
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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby BlueBell1 » Fri Jan 27, 2012 2:12 am

Hi everyone! Thank you for the warm welcome! It certainly helps to have people who understand. I look outwardly so healthy that a lot of people just don't understand how awful I'm feeling!

Thank you for the tip about the mattress topper, I have one in the loft so I'll need to hunt it down! I did go see my boyfriend tonight, and I think it made me feel a bit better to get out, but I still haven't worked up the courage to tell him - which I'll need to as it'll become obvious there's something wrong! How did you guys go about explaining to partners/family/friends?

Has anyone had physio for fibro? My rheumatologist is referring me for physio - he said with a combo of physio and meds, 90% of people have their fibro under control. From what I've seen on here, I'm a bit suspicious about that statistic now! What can I expect from physio?

Final question for tonight! I know that nortriptyline is supposed to aid restful sleep etc. but I'm wondering if it's actually having the opposite effect on me? For the last two nights I've not slept AT ALL. I'm running on daytime naps! While I have had problems sleeping before, never this bad and I was wondering if it was the meds. I have a GP appointment tomorrow so I'll bring it up with her.

Thanks again for being so welcoming guys!
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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby shazq » Fri Jan 27, 2012 2:10 pm

Hi Bluebell

Glad you managed to go out.

With physio it can go either way, we get mixed responses from it, it helps some people but not others but its always worth giving it a try.

With the right combo of meds and depending on how bad your fibro symptoms are some sufferers do manage to carry on working and living a normal life but there are a very high % of sufferers who have had to give up working and live their lives in pain 24/7 despite pain meds. Everyone is different with some being bed bound so i agree with you your Rheumy`s statistic is :swear1:

You could ask your GP to swap you over from nortriptyline to Ami`s as they might help you to sleep better. :goodluck1: with your appt.
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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby denys » Fri Jan 27, 2012 3:46 pm

Hi Bluebell, I agree with Shaz, about your rhuemies % :lol: :lol: :lol: :lol: :lol: I went for physio and it turned into a bit of a farce but I know others swear by it so give it a go, you have nothing to lose and just might gain some relief :fingerscrossed:
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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby FluppyPuffy » Fri Jan 27, 2012 6:02 pm

How long have you been taking the nortriptyline BlueBell, as they can take about a month to fully get into your system. Plus my GP always reminds me when I have any meds changed, increased etc that things will always be a bit worse during the time it takes to get used to the new amounts and types.


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Re: Newly diagnosed - in my early 20s but feel like 80!

Postby garytees » Fri Jan 27, 2012 8:33 pm

Good evening bluebell :yikes: spiky gaz here :!: soz ur havin a bad time with fibromyaliga .I had told my family and friends about me sufferin over 3 years about my fm its been hard for them to understand we hav many different side affects with fm. But i hav also had my problems with doctors 2 about them saying its all in r head with fm or give it few weeks and you will be better still hard for them to understand it 2 and there paid 2 know :facepalm: so u maybe will hav to just to try and find out for yourself but all the fm friends are here 2 help you on are fourm. But like me and many other fm friends we have to try and cope with this nasty illness we fight 24/7. Anyway bluenun soz my fibo fog is back meant bluebell :crazy Anyway bluenun this is .how i get my sort of sleep without taking any tablets is for me to put my sleepin blanket and hav a milky hot drink i find a sky channel that makes me sleepy and 9-out of ten i sleep till the mornin ;-) barmy but it sort of works :?: but dont try this at home :crazy: only jokin it works for me ; and good advice frm the fm fourm you need to try and get out of the house as much as you can i know its not easy bluebell as i suffer a lot of the symptons you hav stated :!: anyway goodluck with your fm gaz :lol:
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