New kid in town

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New kid in town

Postby ToughCookie » Sat Jun 14, 2014 11:48 pm

Hello everyone

My name is Nicola, I'm 21 years old and I was diagnosed with fibromyalgia a few weeks ago.

I started getting joint pains at twelve years old, it was just in my shoulders then. As I got older the pain started getting more widespread until it was in every joint at age 19 . At the time, I'd just been diagnosed with crohns disease and was on a high dose of steroids so it was attributed to that.

In June last year I had surgery to remove damaged and scared intestines. The surgery gave me remission from crohns, but the joint pain never got easier.

When I'd recovered from surgery, I went back to my GP and they sent me on to rheumatology. They examined me and I had an isotope scan a month later. After a clear scan I was given the diagnosis of fibromyalgia based on the physical.

My GP gave me Amitriptyline 10mg to start with. When that gets low I'll go back and have a chat with her about how it's been working and if I want to keep going with it and if so we might up the dose a little.

So far, I'm feeling like a new person. The pain hasn't gone, but for the first time in 4-5 years I'm getting regular, predictable sleep. So even though the pains still there it is so much easier to deal with. I have noticed a slight improvement in the pain too .

I'm also going to be giving a TENs unit a try, since I was bought one yesterday by my partner.

So that's me, I'm looking forward to get to know some of you and learn how to fight this thing.

If you have any little hints and tips for dealing with everything then I'm all ears :) .
Nicola - 21- South Wales - diagnosed with Fibromyalgia 05/2014. - Also have -Crohns - Asthma- Coeliac disease - Osteopenia - High blood calcium - Tachycardia
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Re: New kid in town

Postby denys » Sun Jun 15, 2014 10:22 am

Hi Nicola and :welcome: to the forum so glad to hear you are feeling a bit better with the ami's, lots of members use TENS machines and swear by them so :fingerscrossed: for that too :-D :-D :-D

There is a lot of info on here so have a read through but if you have a particular question then just ask, I'm sure someone will have an answer for you

One thing you will learn is that everyones fibro is unique so just because someone says a particular thing worked for them does not mean it will work for you, its all trial and error and the best piece of advice is to learn to pace, listen to your body and try not to overdo things then hopefully you will remain pretty much as you are for a good while especially as you are so young :-D :-D :-D
Denys

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Re: New kid in town

Postby denys » Sun Jun 15, 2014 10:24 am

Nicola I have just noticed you put up a very similar post in another of the 'where to say hello' boards so have taken that one down to avoid confusion (it doesnt take much) have you read the basic rules for membership???
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Re: New kid in town

Postby ToughCookie » Sun Jun 15, 2014 10:49 am

Thankyou for the welcome, I've not tried the machine much yet but I'm really hoping that it'll help me out.


Sorry about that. That post was more about my background and things, just for people to get to know me a bit, that's why there were two, sorry. I have read the rules.
Nicola - 21- South Wales - diagnosed with Fibromyalgia 05/2014. - Also have -Crohns - Asthma- Coeliac disease - Osteopenia - High blood calcium - Tachycardia
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Re: New kid in town

Postby MichelleJ » Mon Jun 16, 2014 9:35 pm

Hi Nicola and welcome. Glad to hear you have been diagnosed and are being looked after with it. Not glad u got this horrid illness but glad you not having to wait to find out what's wrong still. You know what I mean lol.

I'm Michelle and I'm a 39 year old single mum of one, a nine yr old little boy. Was married but we separated and have to say doing much better going it alone so all good.

Amitrptyline is really good. I was on it for 4 years altogether from my diagnosis till earlier this year. As with all drugs you can get used to them over time and that happened with the Amis for me so I was swapped onto nortriptyline instead which is from the same drug family as the Amis and is also excellent in my experience. The only thing I found with the Amis that I don't with the nortriptyline in that I was left with a groggy hangover feeling the next day from it whereas the new ones don't do that. But I coped with it and the benefits outweighed that for me. I was on 40mg of that but only 10mg of the new one. There are other drugs that may help you too which you could discuss with your g.p, mainly painkillers. Either straight forward paracetamol or if pain is too bad something like tramadol can be very helpful. But dunno whether you need that yet but thought I'd mention it to you so you know what's available should you need it.

Alternative treatments can also be helpful such as acupuncture too but again everyone is different so its a case of try and see.

As Denys has already mentioned to you, pacing is key to managing fibromyalgia. Google it or I'm sure there's threads on here you could read on it too. But it's basically know your limits and don't exceed them, avoid the boom and bust cycle, ie do too much cos your feeling better then suddenly you crash because you exceeded your limits. Even on good days you only do what you could manage on a bad day so that you can always do the same whether bad day or not and that allows you to increase how much you can manage each day by slowly building it up. I have a carer who is fab and has taught me loads of techniques to get some independence back and so between us all this is working.

I just started physio again and this time it's working but its thru applying the principles of pacing its working for me. I go on an exercise bike daily but only do what I can manage on a bad pain and fatigue day which is currently 5 mins. So even though on a good day I might manage 7 or 8 minutes I will still only do the 5 mins I can manage any day if that makes sense? Exercise is really important with fibro and my biggest piece of advice bar pacing would be don't give up moving your muscles. Exercise with fibro is anything that involves stretching or moving a part of your body, even wriggling your fingers counts and that's what I started from as I was bed bound and wheelchair bound. But again it's find your current level of ability on a bad day and use that as your starting point and only increase when comfortable too and then do it in really small slow amounts. I have m.e too so its a balancing act but even for that its vital not to just lie still in bed all day.

Sorry if I've waffled on or thrown too much at you, just take what's helpful from it and ignore the rest. How do you find your fibro effects your day to day life? I saw you have other conditions too so realise it's not just this your fighting. I look forward to getting to know you further x
Dx with fibromyalgia m.e/Cfs and asthma
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Re: New kid in town

Postby denys » Tue Jun 17, 2014 2:00 pm

Dont worry about it Nicola, thats what we mods are here for :-D :-D :-D :-D
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Re: New kid in town

Postby ToughCookie » Tue Jun 17, 2014 9:14 pm

Hi Michelle, thankyou for taking the time to write such a detailed response, I appreciate that :) .

I do know what you mean lol, waiting to be diagnosed isn't fun, I spent 5 years waiting for a crohns diagnosis and kept getting told there was nothing wrong with me and I was just an attention seeker or wanted drugs.

It's good to know that there's a variety of treatments, I've done a little googling and found a few helpful bits and pieces. I've found that taking the ami about 2 hours before bed helps me with the groggy feeling, it only lasts about an hour after I've woken up now. I've taken a few different types of painkillers while waiting for diagnosis. I'm not able to take any NSAIDs since my crohns diagnosis. I find cocodamol very helpful and I did take tramadol for about 6 months, both for my crohns pain and for joint pain. My doctors were happy to let me keep using it if I wanted to, but I've decided to take a break from it for now so I can learn what else helps me. One question I have thought of is about pain medication with ami - what painkillers are safe to use along side it? I've been sticking to paracetamol since I started taking it, but that isn't always enough, especially for my hips and back, and I've started suffering with crohns related stomach pain again too.

Pacing is something I've already learnt with crohns. I've seen the spoon theory floating around and I find that quite apt for me. It's hard to explain to others why I can't always do the things they can and I have to make sure I don't over do things when I'm well but I know if I push over that line then I'm the one that'll suffer for it, not the people nagging me.

I've been wondering about asking for a physio referral, do you find it helpful? I have a lot of paths around me and I really enjoy walking, it's something that helps me clear the fog and relax, and there's lots of places to sit and rest along the way.

I found your post really helpful :) . At the moment, I'm still finding the exhaustion challenging, but I have noticed an improvement since starting the ami. During the winter, I find it very hard to walk, and last year was on crutches to get around for much of it. My hands and feet get really stiff , and sometimes I can't even hold a pencil. I also get these weird crampy/spasmy pain shooting from my wrist into my hands which takes my breath away. Other than that, my joints generally ache quite a lot, the worst being my back, shoulders, hips, ankles and neck and I find I get a lot of dizzy spells, which I think are related to the fibromyalgia, and crippling headaches which make me feel like I've been hit over the head with a hammer or something. Aside from that, my periods are exceptionally painful and put me in bed for a week, so I take the mini-pill to stop me having them at the moment.

Thanks again :) .
Nicola - 21- South Wales - diagnosed with Fibromyalgia 05/2014. - Also have -Crohns - Asthma- Coeliac disease - Osteopenia - High blood calcium - Tachycardia
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