Hello

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Hello

Postby Rachel4 » Thu Apr 04, 2013 2:41 pm

Hi we'll what to say

My name is Rachel I have 4 kids 18, 16, 13, and nearly 2. I am 38 and last December I was diagnosed with the likelihood of fibromyalgia by the rheumatologist.

I am still really confused with my symptoms, last year up until October I had lots of the symptoms, dizziness, fuzzy head, forgetting words, lack of concentration, when getting up my body ached like I had done a very physical workout, tiredness, Ibs, aching in the knees elbows wrists ankles neck back of my neck collar bone, waking in the night with knees and elbows with aching/burning sensation. Since October these have eased of some what and just have them occasionally which this makes me more confused. But 95% of the time I have really bad head. Sometimes these are migraines which are bad enough but sometimes the headaches are much worse.

My partner doesn't understand any of it he says there is always something wrong with me and that it is all in my head!!!!!

I have joined a FB group called faces of fibromyalgia which confuses me even more as the posts are with people in constant agony which again makes me question myself even more or am I just lucky my symptoms aren't as bad.

The doctor who was most helpful and understanding has now left and not sure about the other doctors in the surgery. My medication is 150mg of venlalic xl. For pain/ headaches I have zapain and aspirin for the migraines.

Thanks for listening.

Rachel xx
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Re: Hello

Postby Flaw » Thu Apr 04, 2013 11:16 pm

Hi Rachael,

Welcome to the forum :)
You'll find everyone's symptoms vary. Some are in absolute agony all the time, others can hold down a full time job with the right medicine etc. Also although we all have similar symptoms (general pain, fatigue etc) the complaints differ from person to person. Some will get more tummy troubles, some more joint pain, Iike you others may find migraines are the biggest pain for them. Fibro is a rainbow of symptoms in all varying degrees!

I don't know about the other forum you mentioned but this one is absolutely wonderful and you're bound to find a wealth of information and support. I know I do!

As for your partner, if you go to the 'general' section of this forum there's a sticky I posted about notes from my GP. There's a sheet on there she made especially to explain things to people close to us, I found it really helpful, perhaps you will too.
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Re: Hello

Postby LouLou » Fri Apr 05, 2013 10:57 am

Hi Rachel

:welcome: to the forum. I completely agree with Flaw, we are all so different on here and FM affects people differently, just like what helps one persons pain won't help anothers.

For me I feel pain constantly but the majority of the time it is manageable with pain killers and I work 30 hours a week. I have times where the pain is worse than others and times where it floors me completely. It is possible that your FM is there and just isn't as bad as others as there are people on here like Flaw said who can't work at all because of FM and then there's people like me who can do some hours but still suffer.

Flaw's post about the notes from her GP are a fab read and will really help you, I've had FM for 2 years and I learnt a lot more from Flaw's post than I ever have from doctors.

Is there another doctor in your surgery who you like and could see? Mine is fantastic and he specialises in Rheumatology and chronic pain illneses, but we have about 8 doctors in the GP surgery who all have different specialist subjects. I must admit I do have my favourite doctors there so if I can't see my normal GP I always ask for one of my faves lol. Or you could ask if there is a GP who specialises in FM and related illnesses, though this isn't always necessary you just need a GP who is willing to listen and support you.

It may be that you need your meds tweaking a bit to help with your bad head. It's not something I suffer with like you do, so I'm sorry I can't advise you anymore on that.

I hope I have been of some help, as Flaw said this forum is great as we are all in the same boat and will encourage and help each other through those bad days we have. There's also loads of information and tips for coping which we have all added to so take a look at that and see ifthere is anything you could try.

Take Care
xx
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Re: Hello

Postby denys » Fri Apr 05, 2013 11:14 am

Hi Rachel and :welcome: to the forum as others have said we are all different and with this codition symptoms vary from what we would class as a good day to when we are in a flare, thats what is so annoying we cant really predict what things are going to be like from one day to the next :crazy: :crazy: :crazy: :crazy: :crazy: :crazy: but on here we like to try to dwell on the good and positive things.

We try to give advice or tips on what helps us in case it can help someone else but are here if anyone is having a hard time :-D :-D :-D
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Re: Hello

Postby FluppyPuffy » Fri Apr 05, 2013 11:48 am

:welcome: to our little sanctuary Rachel :cow-wave: :cow-wave: :cow-wave:

From what Flaw and LouLou have already said, I hope it's helping you see a little more about FM and how it affects us all so very differently. It is a very vague ad unpredictable condition which makes living with it such a daily challenge :facepalm: :facepalm: :facepalm: With you saying there has been an easing in some of your symptoms since October, it could mean that the current cocktail you have is doing a pretty decent job, which is what most of us hope for as, at the moment there isn't anything meds~wise that can take away all of the cruddiness that FM throws at. If you can, try not to think or worry too much about this positive change, instead try and enjoy how it feels. WRT headaches and migraines (I'm part of that group as well :hit1: :hit1: :hit1: ) there are different meds and treatments that can help make them manageable. This can range from painkillers thru to betablockers to help with prevention thru to things like triptains which are taken when a migraine starts. The best thing to do is talk to your GP about them and see what suggestions they come up with that could be suitable for you to try.

As for getting your OH to try an understand how FM affects you, as well as the info that Flaw's GP has provided, there are some other things on here that might also help. The Spoon Theory explains what it is like to live with a long term illness/condition http://www.butyoudontlooksick.com/navig ... Theory.pdf One To Show The Non Believers viewtopic.php?f=2&t=4732 does a fantastic job of explaining more about living with FM and the info sheets from Flaw's GP are another superb source of info to help get over just what it is we deal with each day viewtopic.php?f=12&t=16501

Just like the FB group you have joined, on here we are all very different with our symptoms, ways in which we are affected etc. I've been part of the club for 13 years, and even before I was officially dx'd, with the way I was being affected by symptoms that had appeared in those early days, my previous employer offered me full retirement on medical grounds due to how I was being affected. These days I'm in constant agony, can only do things for very short periods of time and keep finding that more and more of what I used to be able to do is being limited to the point where I'm needing more and more help from OH and son :facepalm: :facepalm: :facepalm: Very frustrating, but sadly something I either learn to live with or burn myself out fighting against :( :cry: :( :cry: :cry:

Have a look around the boards as they are packed with all sorts of info and suggestions that you might find useful. And anything you're wondering about, just ask away. It doesn't matter if it's something that has been asked before or that you think might be a bit silly, whatever it is, there is usually something that we can direct you towards or give you some ideas about.
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Re: Hello

Postby shazq » Fri Apr 05, 2013 4:35 pm

:welcome: to the forum Rachel. :wave:
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Re: Hello

Postby cameron1 » Sat Apr 06, 2013 2:02 am

Hi hun

I'm new to this site as well but joining was the best thing i have done and I received so much useful advice and support.

I was fit and healthy until I had my son. I was a police officer on a response team, sometimes working 19 or 20 hour shifts. I was at the gym regularly, walked my dog everyday, had a manic social life. I never moaned, always looked on the bright side of life. I was always the life and soul of the party and the person whom all my friends turned to for support.

Then after having my son and experiencing some difficulties, I ended up with fibro, and my life has not been the same since. I just cannot do the things that I used to, because my body and my head cant cope with it.

I experienced difficulties having my son in 2007 and then it was just there......the fibro.

It was not diagnosed until the end of 2011. In one respect I was relieved I had something wrong with me....because it meant I was not crazy and it was not all in my head. In the other sense I was devastated....this is not the life I want. I wanted my old life back. I wanted to be told it would go away after six months, or there was a wonder pill that would manage it completely.

Unfortunately not. I have now come to the conclusion that there is no point worrying about what I cant change... I need to worry about what I can change and what I can control. I have cut all processed fats out of my diet. I have given up caffine and smoking. I try not to burn the candle at both ends, and I recognise my limits. I now say no to people if I cant do it.

Its frustrating because doctors seem to have very little knowledge and are quick to dismiss the fibro. Even if they do acknowledge it, often they don't know how best to treat it. I have really had to push with my doctor.

My advice would be to research fibromyalgia. Educate yourself.

Try printing off some stuff for your husband to read that explains fibromyalgia in simple terms. In fact this website does a good explanation on it home page called " what is fibromyalgia".

From what I have gathered, most sufferers share some common symptoms. And like with MS, you have good days and bad days, good weeks and bad weeks, and even good months and bad months. And some people are unfortunate enough to be in constant pain. For me, in the warmer weather it is much easier to manage the physical pain, unless I get very stressed or run down. But in the colder months, the pain can be absolute agony. The fatigue is something that is there all the time for me. When I wake up in the morning, my head and my body hurt. I feel like i'm broken. I just cant function. It sounds silly to someone that doesn't understand, but mornings actually "hurt" me. I might have 12 hours sleep but I always wake up feeling like I could sleep for a week.

There are no rules from what I understand. Maybe try keeping a diary to help identify if there are any major triggers for you. Keep a note of the weather, what you have eaten, anything that causes you stress, how much sleep you got.

The most important thing is to listen to your body. And don't over exert yourself or try to just push through it, because it will just get worse.
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Re: Hello

Postby Adie hawkeye » Sat Apr 06, 2013 10:55 pm

HI Rachel

FMS varies considerably from one suffer to another from acute to just that feeling that you have experienced when you get out of bed feeling like you have done a real work out the night before to in my case feeling like I have just jumped through time by some thirty years and know how I am going to feel when I am in my eighties ?

I have according to my rheumatologist I have acute FMS though I dont think its cute at all it bloody kills lol I have had this for some time now and its still confusing as not just your partner but alas some doctors dont understand or want to recognise FMS though thankly that is changing

I too suffer with really bad headaches that some times put me to bed for days

As for the confusion that could also be because of the fibro fog which effects me quite a lot forgetting peoples names and the conversations that I am having

I hope this helps even a little bit and that your husband perhaps takes some time to look at the web site and read about FMS and starts to be more of a help to you
Failing that tell him to contact me and I will engage in a chat with him that I will lose concentration on some way through it this will annoy him and he will think your great lol

Be safe

Adie
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Re: Hello

Postby Rachel4 » Mon Apr 22, 2013 12:02 pm

Thank you people for time out of your life's to read my post.

I don't often get time to go on the Internet to read this I did try on my mobile but this was so small I gave up. Within time I will navigate more round this site more. The rhuemotolgist gave me a small booklet about FM and said she didn't need to see me again. No advice given to me by doctor either.

Think this is it for me on computer today too my head is so fuzzy and really annoying just wanna sleep it off but with a 23month old i guess thats not an option lol. So again I will say THANK YOU.

Gentle hugs Rachel xxx
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