Fibro Newbie

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Fibro Newbie

Postby Wackers34 » Tue Apr 30, 2013 1:58 pm

Hi all

Im 34 and was diagnosed with Fibromyalgia in March of this year after having the pains for only 4 months before this. So Im quite new to all of it, but have been on so many medications already.
At first they thought it was anxiety and put me on Citralopram this did not agree with me and made me slightly manic... :crazy:

It started with a pain in my back one day when I woke, then moved to my chest, then to my neck...now its all over and in arms and legs...I also have IBS, Heartburn, terrible fatigue, awful sleep problems...got all the nerve symptoms also, buzzing, tingling, prickling, burning in arms and legs and on scalp...the list is endless and this has all happened in about 5 months!

I have been signed off work since Jan and am now on a graded return of 2 days a week. I also have two small children 4, and 2 to look after.

I have tried Mitrazapine for sleep, made me too drowsy, then Amitriliptine then I decided to try and do it naturally for a while and tried 5HTP, magnesium malate, fish oils, vit B compex and Vitamin D...This was going ok was only a few weeks into this, but the pain got so unbearable and I had a friend who tried Cymbalta...she also has fibro and it worked for her. Tried this last week and again made me slightly manic...started getting muscle jerks, tremors, sweating profusely...just doesnt agree with me!

So today I rang the doctor, he wants me to go back onto the amitrilyptine, as i was only on it for 4 weeks at a 10mg dose, I have Tramadol to take as and when and also been given Diazepam (to help with muscle jerks at night - This has helped me before)

My sleep is awful...I can go most days with only 2-3 hours...when I was on Mitrazapijne i got about 8 hours but i was too sedated next day.

Excercise is pretty bad for me, can only walk for about 10-15 mins before my pains in legs come about, shooting pains etc...before in December, i was playing tennis regularly and miss it lots (does this get easier?)

I have managed to find a supportive doctor...I have done a lot of research and have bought books on Fibro.

Sorry for the long post, I just wanted to tell my story to someone and see if you can offer any advice or hope to me that It will get better...The problem is, im too impatient and want everything to work straightaway!

Anyway, just wanted to say hello and hope someone can offer me some support and hope for the future because at moment Im worried about it and just want to hear that it can get better and I can start smiling again :-D

Meds im currently on:
Amitrilyptine (10mg), Diazepam as and when, Nytol as and when, Valerian Root as and when, Magnesium Malate, Vit B Complex, Vitamin D 2000IU, Fish Oils, Evening Primrose Oil, Flax seed
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Re: Fibro Newbie

Postby FluppyPuffy » Tue Apr 30, 2013 2:47 pm

:cow-wave: :cow-wave: and :welcome: :welcome: to the forum Wackers :bear-dancing: :bear-dancing: Sorry to hear how things are for you at the moment, hopefully joining us will help as you try to find the right way for you thru things. There is always a glimmer of hope, sometimes tho it can get a bit lost in the darkness that tries engulfing everything that we know as life :facepalm: :facepalm: :facepalm:

I've moved you into here with this being your intro post as it's a more suitable part of the forum than where you had originally posted it.

There is lots of info and advice on here, so have a bit of a read as you find your way around, you may come across some useful suggestions that could help make things a little more comfortable for you.

Looking at the things you're currently taking, altho you've said you only use it as and when, you do need to be very, very careful when taking herbal/alternative/complementary treatments alongside prescribe meds. Valerian works on serotonin levels, as does amitriptyline, and if the 2 interact, it can give rise to Serotonin Syndrome, this linky has some info about this very unpleasant and potentially serious condition http://www.patient.co.uk/doctor/Serotonin-Syndrome.htm If you want to try herbally/complementary~type things, please seek advice from your GP or pharmacist about possible interactions before taking them. Just because something is more natural, it doesn't mean that it will perfectly safe to take with prescribed meds, it's always better to check things out to make sure there is little chance of something happening.
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Re: Fibro Newbie

Postby shazq » Tue Apr 30, 2013 4:32 pm

:welcome: to the forum Wackers :cow-wave:

:fingerscrossed: your new meds will help.
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Re: Fibro Newbie

Postby LouLou » Wed May 01, 2013 1:42 pm

Hi Wackers

Welcome to the forum. I know how you feel about wanting to have solutions and things working straight away - patience is not one of my strong points at all lol.

That's the one downside to the meds normally given for FM. A lot of them take a few weeks or months to get into your system properly so I'm afraid it is a bit of a juggling game till you find the right combination for you. In regards to daily routine and exercise, it's taken me a good year to not only find the tablet combination that works for me, but also get a routine where I can still go to work and still do a bit of exercise a few times a week.

Just take your time, keep notes on what you try and when so you can see if it helps you or makes things worse and take it easy.

Hope that helps.
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Re: Fibro Newbie

Postby Wackers34 » Thu May 02, 2013 3:22 pm

Thanks for all your kind replies, you have made me feel most welcome :-)

Wow thanks FluffyPuppy, although I have heard of Serotonin Syndrome, I hadn't realised Valerian root could cause this! I wonder if this is why have been getting such bad twitches and a bit of internal tremor. I won't use that one again, whilst on the amitrilyptine.
I have also been using Tramadol as and when, maybe this can cause it also?

What meds / supplements do other people use here?

Yes patience is not my strong point...in the last four or five months I have been on so many different meds, not really giving them a chance to work. I think Amitrilyptine was the one I tolerated best, I should stick with this one longer.

My main bugbear is sleep, im such an insomniac! Have tried what feels like everything, sticking to a routine, bath, oils, reading book, going into another room, counting backwards from 100, mindfulness techniques and nothing seems to work...as i start to drift off i either cramp or jerk awake..its very annoying and I think im scared of it happening now.

Because the weather is finally improving, i am trying to walk outside, even if its just 15 mins a day...I have got out of this a bit.

Does anyone else get nerve pain, like tingling, stinging, buzzing in foot, twitches, sunburn feeling? This i get often, i have mentioned it to GP but they just say anxiety...I really would like to see a neurologist about it, but my doctor is really hard to push when it comes to this!!

Sorry for all the questions and I will look forward to getting to know you all better

Thanks :-)
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Re: Fibro Newbie

Postby FluppyPuffy » Fri May 03, 2013 12:56 pm

Wackers34 wrote:Wow thanks FluffyPuppy, although I have heard of Serotonin Syndrome, I hadn't realised Valerian root could cause this! I wonder if this is why have been getting such bad twitches and a bit of internal tremor. I won't use that one again, whilst on the amitrilyptine.
I have also been using Tramadol as and when, maybe this can cause it also?

Been doing a bit of hunting around to see about Tramadol the possibility of it affecting/causing Serotonin Syndrome and there are few references that say it could contribute to it, but with it being a regulated and prescribed med, it seems to be less likely to stir things up.

Serotonin Syndrome is very rare, so please try not to think and worry about it too much. I was just wanting to make you aware of it as a possibility with you using meds and a treatment that could cause a potential interaction as not all suppliers/sellers may mention it, plus FM can make us extremely sensitive to things, which could add to a potential reaction to things.

Don't worry about asking questions, we've all been at the stage where you are and will happily share what we have found out ourselves as it might be of use to you.

The nerve pain you've described is something that a lot of us have and still get at times, for me it feels like sunburn, and I sometimes get a sensation that feels like there is something crawling under my skin as well. I haven't found anything to make it go away, but when it feels really hot and sore, aloe vera gel seems to help cool it down a bit. I've also been making more of an effort with keeping my body moisturised which seems to be making it a feel little less intense as well. For those awkward and extra~hurty areas, one of those lotion applicators with a big spongy pad makes getting them done a bit easier.
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Re: Fibro Newbie

Postby Wackers34 » Fri May 03, 2013 6:30 pm

Thanks FluffyPuppy

I usually get tingling or buzzing more, like a mobile phone vibrating in my foot...so annoying! Any tips for this one? ;-)

Next time I get the burning, I will try Aloe Vera, thats a great tip.

The Tramadol I only use as and when as I was scared of using too many drugs. Do you think it would be better to take regularly than as and when? The doctor didn't mention this. I will ask when I next go though
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Re: Fibro Newbie

Postby FluppyPuffy » Fri May 03, 2013 9:21 pm

You could try taking it on a regular basis as doing so could help keep things at a constantish, more manageable level for you. If you do, try starting off with the lowest dose that helps you, then if/when things start to flare up, you will have some manoeuvrability in your dosage to increase it while things are spiking, then hopefully as things start easing back, you will be able to reduce the amount you are taking back towards what you had been on pre~flare.

If you're unsure about anything tho, talk to your GP before starting things, just to help put your mind at rest if needed :grouphug: :grouphug: :grouphug: :grouphug:
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