Just diagnosed: Hi all, I am Helen... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just diagnosed

Hells-Bells profile image
10 Replies

Hi all,

I am Helen & aged 48. After 18 months of slowing down I have now been diagnosed with Fibromyalgia, to say I'm in shock is an understatement!

I have always been a very traditional stay-at-home mum/wife & although I have always been overweight I was always a whirlwind of energy, people who never saw me tackle a task before would always be amazed what I could achieve in such a small timescale.

I would go to bed @10 pm & awake @ 5am to walk our dogs for 2 miles, go home make breakfast for everyone then go & work hard for 4 hours on our 4 allotments, then off to the gym for a couple of hours, have a little break then off for a 8 mile bike ride, after which I would settle in for normal household chores or help friends with their own chores or DIY jobs.

I have to confess I delayed going to my Gp at first because I wanted to get my husband sorted out before me, he has had kidney disease for 28 years but only stated dyalais this year.

I have gone from doing EVERYTHING for my family to being able to do very little for them. I am quite stubborn & refused to admit I needed help for so long. Thankfully my husband & two adult boys ( who still live @ home) have been very supportive so much so that I don't even need to ask for their help as they are always "watching" me. Helen.x

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Hells-Bells profile image
Hells-Bells
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10 Replies
Hedgerow profile image
Hedgerow

Hi Helen,

Welcome to this site, you will find a lot of support and information here. I know I found it a big shock when I was diagnosed, and it took many months for me to come to terms with it. Thank goodness you have a supportive family. Best wishes to you. xx

Hells-Bells profile image
Hells-Bells in reply to Hedgerow

Thank you Hedgerow hun having others to "talk" to that are experiencing the same thing as oneself sure is gonna help with coping/dealing with it.x

Shadows-walker profile image
Shadows-walker

Hi you and I sound very similar ,I have fibro along side other stuff but I have been referred to a pain and fatigue clinic which was amazing it gives you coping statagies I learned to pace and I personally do one physically job per day and one mental my body just stoped working last jan , no stress is also very important but I think at moment you need to rest which is what I did for 6 months ,I can know push myself to do big tasks but I pay for it when I do ,don't fight this it won't help , learn to except which when you have been a whirl wind or superwoman it's do hard ,frustrating doesn't even come close ,my doctor just tells me to be gentle with myself and kind and listen to my body it's important, I live alone learning to ask for help was the hardest thing for me as I learned not to ask when I was married ,so I have had to learn to start again ,this site has been an amazing support ,good luck look forward to chatting and remember to smile it's half the battle.

Christina x

Hells-Bells profile image
Hells-Bells

Hi Christina I have suffered from chronic lower back pain for a great many years (fused disc) & sciatica & was referred to a chronic pain clinic but had no idea that the clinic was only there to help me control my pain via meds, silly me!

My GP referred me there as I was on an awful cocktail of drugs of which I wanted off so I never returned to the clinic & went cold turkey off the drugs . Excise slowly helped me that time until I was only achy on bad days.

Now I think I am more than willing to accept any drugs they will give me just to try & get the "normal" me back.

Asking for help is never easy hun when one has always been the person that is always there to support others, I'm just trying to accept it all as best as I can.

I am glad you found the help & support from this group hun. It's truly wonderful what advantage the internet has done for bringing people together. Helen.x

Hi Helen,

Welcome to the forum, I hope we see you around.

It is a difficult one to change how you see yourself and watch as your family change with you. You are lucky in that you do have a supportive family which is a blessing and you have found this site. I came across this site when I was trying to understand fibro and stayed as the people are friendly as well as informative.

I agree that you have to do whatever you need to keep yourself well. For some it still means gentle exercise and others it us a cocktail of drugs, unfortunately. Everyone is different and reacts to fibro differently :)

I hope you can find the information you need in the mother site, and there Is usually someone about that can answer specific questions.

Take care :)

Fibrofoggiest profile image
Fibrofoggiest

Hi Helen,

The others have given you a lot of good information. I have had this nightmare of fibro for over 30 years, the first 20 of which I thought I was just about going mad and was either a hideous hypochondriac or about to go to sleep and never wake up. When I eventually got the proper diagnosis I must say it was such a relief and made sense of all the back, neck, shoulder etc., non restorative sleep, muscle pains together with IBS and horrible migraines. But the diagnosis initially made me feel empowered as for the first time people started to take me seriously. However things have changed even since then, but finding his community I can honestly say was the very best thing I have done. There are so many compassionate people here together with a lot of advice coming from experience.

Tiredalot mentioned our mother site, and I would urge you to go and take a peek at it as it has much information and a lot of advice on many areas of our lives with this condition fibroaction.org

We also try to lighten things up with a goodly deal of humour, so if you feel like joining in on that do feel free. As one of our wonderful administrators Gins, says, pull up a chair and join in :-)

I much look forward to seeing you around and hope to be of help if ever you need some.

Sending lots of positive healing vibes your way :-) :-) :-)

Foggy x

dlee43 profile image
dlee43

Hi Helen, my name is Diane and I live in the US in Ipswich, Mass. I have had fibromyalgia for many years but 3 years ago I needed a total knee replacement and my surgeon said I would probably have a much tougher time with pain and recuperating because Fibro doesn't like to be disturbed and boy was she right. I have been in hell and very depressed. Constant pain and on every med that is out there. I can't take anti inflammatory drugs because they make me bleed. I have swallowed a camera so the doctors could find the bleeds and they had to go down my throat to cauterize 2 bleeds in the intestines. I went to therapy , 5days a week for a solid year and in between had a manipulation to unlock the knee which froze. I need the other knee done but the doctor said she won't do it because I will be in unbearable pain. A lot of time I can't even get out of bed to do just simple tasks. It really has been a nightmare. I take 6 oxycodone 5mg. with tylonal a day. I am weaning off savella right now. I would just like one day free of pain. I have 9 grandchildren who are all active in sports and dance and cannot go to most of their activities.

dlee43 profile image
dlee43 in reply to dlee43

This is my first time on healthunlocked and I am very impressed.

TheAuthor profile image
TheAuthor

Hi Hells-Bells

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and I genuinely hope that you find it useful, informative and loads of fun! I can see that our Foggy has given you the address to our mother site, it is really worth checking out as it hosts loads of useful Fibro information.

I genuinely look forward to bumping into you around the forum and you have found a very friendly place to join and explore.

All my hopes and dreams for you

Ken

harmony94 profile image
harmony94

You seem a remarkable lady. You are so lucky to have the help and support of you family. Ihave had fibro for 18 months. I had just been married two years after being on my own with two children for 8 years after getting divorced from hubby no. 1 . So I was the one who did every thing and just when my life seemed sorted I had fibro my hubby has recently had a heart attack. I too have a supportive son and daughter in law and a daughter. My hubby Is a great help. It does take away the illness it just makes it bearable. I got up at ten, walked the dog now having a lay down. You need to remember to pace yourself.

All the best.

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