Hello from Fibromyalgia sufferer

hobnob
hobnob Member Posts: 6
edited 22. Apr 2010, 04:57 in Living with Arthritis archive
Hi all, I have today been diagnosed with Fibromyalgia after only a few visits to my gp, last year a diagnosis of IBS and more recently OA of the hands. I have downloaded a fact sheet re Fibromyalgia and my first reaction was to cry, it described my symptoms right down to the poor concentration and forgetfulness (I had been so scared I was suffering from dementia) so part of me is feeling relief that this is all linked and another part of me is thinking that at 55 I am never going to enjoy any kind of active life again.
I would really like to hear from any fellow sufferers as I feel a little scared right now.

Comments

  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Hobnob,

    Love the name. :D Welcome to the forum. It is frightening to be diagnosed but in a way, a relief as now a strategy can be put into place, to hopefully, cope with it all. Now that you have joined all us lot, you have absolutely no need to feel so frightened and alone. We do all suffer with different forms of arthritis, to a greater or lesser degree but we do know what it is like, whereas sometimes our family and friends, do not. We offer as much help, advice and support as we can and keep people afloat in the bad and not so good times.

    Username, Jilliflower has posted on the Hello zone today and she wishes to chat to others who have been diagnosed with fibro. I suggested to her that she post on this zone. Perhaps you two could "link up".

    I am sure others will welcome you very soon. The forum is a little quiet this afternoon, peeps enjoying the good weather. :)

    Look after yourself,

    Hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
    Hi Hobnob, I think there are a few Fibro suffers on here including me.
    Im sorry that you have been dx with it.I was last OCT & also have OA in most of my joints inc.neck & spine.Plus IBS.That was all dx in Aug 08.
    Not nice is i t.
    I would read all you can about the condition so you can be ready for what it chucks at you.Thats what i did & you'll always find someone around on here to talk to. I have made & met a few people from here & planning on meeting a few more this year.
    Im having a major flare at the moment with the Fibro & its affecting my Tendons in my heels & Knees are tight.Then as usual the OA is playing up in my neck & spine causing lack of sleep. :roll:
    There are quite a few sites on Fibro & i found them really helpful in dealing with this condition & if you need someone to talk to im only a PM away.The main way to deal with it is rest,hot baths & pacing yourself,you can also ask to see an Occupational Health (OT) with a referal from your GP to see if you can get aids to make life a little easier for you. I have & got a perching stool for the kitchen,great,sit there peeling & chopping(well what i can chop)Veggies & a bed lever to help me turn over at night. Im also waiting for social service for a bathing assessment,i already have stair rails in place & bath rails.
    Take care & ive rambled as usual but hope i helped :lol: debs
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Hobnob,

    Just dropping in to say hi and welcome. I know having diagnosis hitting you can really throw you out for a min but its good you have found the site and glad you have the info downloads. For me the more I understand it the easier it is to deal with. I really hope you find the site useful and nice to meet you. Cris
  • doodledame
    doodledame Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi
    I've just joined this forum trying to find some advice regarding OA and fibromyalgia.
    I was diagnosed with OA and fibromyalgia last year. I have always been fit and active and am finding it difficult now I am not able to do so much.
    My joints have been bad for several years with my knees and hips being the worst.
    I had a total knee resurfacing done last year and although it has helped the knee the hip is now worse and I'm requiring more pain relief than prior to the op.
    I take solpadol and/or Tramadol 3 or 4 times a day. I'm also on 50 mgs of Amytriptiline. This helps with the pain but does not get rid of it.
    I can walk for about an hour a day but begin to suffer more pain after that.
    I also have IBS due to food intolerances.
    At nearly 57 I am fed up thinking that I won't be able to hill walk anymore ir do the activities I love to do.
    Any advice would be great!
  • bubbles
    bubbles Member Posts: 6,508
    edited 30. Nov -1, 00:00
    hobnob wrote:
    Hi all, I have today been diagnosed with Fibromyalgia after only a few visits to my gp, last year a diagnosis of IBS and more recently OA of the hands. I have downloaded a fact sheet re Fibromyalgia and my first reaction was to cry, it described my symptoms right down to the poor concentration and forgetfulness (I had been so scared I was suffering from dementia) so part of me is feeling relief that this is all linked and another part of me is thinking that at 55 I am never going to enjoy any kind of active life again.
    I would really like to hear from any fellow sufferers as I feel a little scared right now.

    Don't worry hobnob, you are not alone, I was convinced I was rapidly loosing the plot, forgetting things, unable to concentrate, doing the strangest things, anxiety, depression, frustration, pain, you name it, it gets you. It is depressing and frustrating, but you have to try and concentrate on what you can do. Easier said than done, I led such an active life both at work and at home, then to have that taken away if a bolt from the blue. Accepting how things are is part of the battle, some days are better than others and some days are rotten and you throw them away in your mind, tomorrow is always different. I am probably rambling, but I do understand what you are going through. I hope you have a good GP who understands this illness and is supportive and prescribes the right medication, to help as much as possible. It can be a bit of trial and error to get things under some sort of control. Take lots of care and rest when you need to, don't do what I do and overdo things then pay for it with a vengeance. :roll: XX Bubbles
    XX Aidan (still known as Bubbles).
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
    I think Bubbles about said it all there.
    I had an active life,working 6 days a week fulltime & running a house & family.
    I still struggle to come to terms with the fact that my mind tells me to do something & my body creaks & tells me i cant. thats the bit i cant deal with.
    My meds just about keep me mobile but the mornings are the worse. If my OH isnt here to make a cuppa im trying to get my legs to move to the kitchen & the stairs for the toilet is even worse.
    Bathing is a battle & a wash usualy wins.
    Ive got social services coming out tomorrow for a bathing assessment,ive had one done before but they tried to bully me into a walk in shower,that was before the Fibro was dx & now my OT has said if they dont give me a bath lift ive got to ring them & they will get it sorted as i need bath to soak my muscles.
    debs
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Hobnob and welcome.

    I have found this forum a great support and very friendly.

    I'm sure you will too.

    Never be afraid to ask questions, rant and make suggestions ..

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • frogmorton
    frogmorton Member Posts: 29,881
    edited 30. Nov -1, 00:00
    Hi Hobnob

    and welcome to the forums from me too.

    You are not alone with the fibro are you? My ex MIL has it too and I downloaded the info shet for her a couple of weks ago. I think it was very good and informative.

    I hope you find the site helpful and the suport as invaluable as I have

    Love

    Toni xx
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I'm sorry you've got fibro, but at least you can put a name on the beast you'r fighting! :wink: I expect some of the reaction you've had is shock, its always a big thing to be told you're not well, but at least you can get the right treatment and advice now. :)
    Good luck, love Sue
  • iggly_pop
    iggly_pop Member Posts: 27
    edited 30. Nov -1, 00:00
    I was diagnosed with fibromyalgia and OA last June, I was scared when i first read up on these conditions but you find your own coping mechanisms and find ways of making your days successful, i've found alot of help and companionship on these forums. They're brilliant for when you are having a tougher than usual day or when you are looking for a bit of advice.
    You've just got to figure out what the best methods for you are and your fears will recede and you'll be able to be happy within yourself again :)
    Kind Regards,

    Rebecca
  • jordan7j
    jordan7j Bots Posts: 346
    edited 30. Nov -1, 00:00
    Hi hobnob (love the name!!) I was diagnosed with fibro only on Friday 16th at my rheumy appt. He did the tender points test, and asked questions then did a physical exam.

    It hadnt occurred to me that I had fibro. The RA is enough really, but oh well. Could I ask where you downloaded the info sheet from? I have found a site, but its in pdf format, and i want to have a paper copy to refer back to.

    How do you feel? I think I am a bit shell shocked still, but sure it will sort itself out.
  • hobnob
    hobnob Member Posts: 6
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    Hi Hobnob,

    Love the name. :D Welcome to the forum. It is frightening to be diagnosed but in a way, a relief as now a strategy can be put into place, to hopefully, cope with it all. Now that you have joined all us lot, you have absolutely no need to feel so frightened and alone. We do all suffer with different forms of arthritis, to a greater or lesser degree but we do know what it is like, whereas sometimes our family and friends, do not. We offer as much help, advice and support as we can and keep people afloat in the bad and not so good times.

    Username, Jilliflower has posted on the Hello zone today and she wishes to chat to others who have been diagnosed with fibro. I suggested to her that she post on this zone. Perhaps you two could "link up".

    I am sure others will welcome you very soon. The forum is a little quiet this afternoon, peeps enjoying the good weather. :)

    Look after yourself,

    Hugs
    Elna x
    Thanks Elna for your kind welcome, really shocked at the many good wishes that I have received, how kind people are.
  • hobnob
    hobnob Member Posts: 6
    edited 30. Nov -1, 00:00
    minky67 wrote:
    Hi Hobnob, I think there are a few Fibro suffers on here including me.
    Im sorry that you have been dx with it.I was last OCT & also have OA in most of my joints inc.neck & spine.Plus IBS.That was all dx in Aug 08.
    Not nice is i t.
    I would read all you can about the condition so you can be ready for what it chucks at you.Thats what i did & you'll always find someone around on here to talk to. I have made & met a few people from here & planning on meeting a few more this year.
    Im having a major flare at the moment with the Fibro & its affecting my Tendons in my heels & Knees are tight.Then as usual the OA is playing up in my neck & spine causing lack of sleep. :roll:
    There are quite a few sites on Fibro & i found them really helpful in dealing with this condition & if you need someone to talk to im only a PM away.The main way to deal with it is rest,hot baths & pacing yourself,you can also ask to see an Occupational Health (OT) with a referal from your GP to see if you can get aids to make life a little easier for you. I have & got a perching stool for the kitchen,great,sit there peeling & chopping(well what i can chop)Veggies & a bed lever to help me turn over at night. Im also waiting for social service for a bathing assessment,i already have stair rails in place & bath rails.
    Take care & ive rambled as usual but hope i helped :lol: debs
    Hi Debs, thank you for your message, sorry that you are having a flare up at the moment, gosh it must be a nightmare with the oa in your neck and spine as well. I must confess apart from the one fact sheet I havn't looked at any other sites, but I will. In the past week I have had some bad days, yesterday was my first good day, when I even thought maybe the diagnosis was wrong! and I pushed myself to the limit and today am suffering for it (that will teach me ay) so i'm feeling totally frustrated, guess I will learn, the way I usually learn (the hard way) Everyone has been so kind and it's good to know that support is out there.Take care. Sue
  • hobnob
    hobnob Member Posts: 6
    edited 30. Nov -1, 00:00
    hi there hobnob, i dont suffer from this thank god but i did want to send you pixy hugs, we all feel scared some times :wink:
    Just wanted to say thank you for your pixy hugs, you are very kind. Hope you are ok. Take care Sue (hobnob) :)
  • hobnob
    hobnob Member Posts: 6
    edited 30. Nov -1, 00:00
    skezier wrote:
    Hi Hobnob,

    Just dropping in to say hi and welcome. I know having diagnosis hitting you can really throw you out for a min but its good you have found the site and glad you have the info downloads. For me the more I understand it the easier it is to deal with. I really hope you find the site useful and nice to meet you. Cris
    Hi Cris, thanks for your message, yes the diagnosis has kinda thrown me, I impulsively joined this site but really glad I did, everyone is so kind. I will be looking at more info dowloads, I think I have needed a little while to digest the fact that I will not be able to run around like a mad thing, which has been the norm for me, tried that yesterday (a good day) and boy am I suffering for that today!
    It's good to meet you too, take care. Sue (hobnob)
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
    Hi Sue, Things will settle down for you soon & learning to pace yourself is the hardest thing to do especially if like me you have been active all your life.
    Ive just changed from Gabapentins to Pregabalins,the pregabs are supposed to be better than Gabs & as i read the right medication for Fibro. So its a bit of a rough time for me at the moment but hopefully worth it to get rid of this nerve pain.
    You will always find someone here to ask for advice & im normally around most days,so if you need to ask anything just fire away.I'll help you if i can.
    I push myself far too much around the house( i cant work any more) but im just getting things in place from OT at hospital & social services to try to make things a bit easier for me.
    Ive had loads of different meds,seen various people at the hospital & its a long road to getting the right combination Of meds & things at home to make life a little easier.
    Take care debs
  • eastmidlandsman52
    eastmidlandsman52 Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi Hobnob :) Its true a drink of tea is too wet without one! I'm sorry to read of your pain and suffering. I felt like that when my Fibro was diagnosed backed in 2004 which was on top of my OA diagnosis in 2000. I can so well believe you think you're suffering from poor concentration and forgetfulness and wondering if you've got the onset of of dementia. Thankfully,you're not.The combo of pain from the OA (in my case neck,spine,right shoulder,all fingers and both thumbs,both hips,right ankle and left big toe) and the fibro (in my case bodywide pain of the ligaments,tendons,muscles and flu-like symptoms of sore throat,hot & cold temperatures, sneezing,shivering) conspire together to create the nightmare flareup which thinks you're losing your marbles. To that end I send you a big gentle cyberhug through the interwebski!

    The lack of proper sleep on a nightly basis day in and day out do not help with or without a flareup. The long-term effect of both is they leave you exhausted,tired,worn-out,snappy,depressed, weepy and very 'under-the-weather'. Arthritis Care have a booklet on this which you may find very useful. There are no right and wrongs regarding treatment for these combined conditions.I tend to just take painkillers for the OA,and Amytriptyline (an old-style anti-depressant) for the fibro.The latter treatment can take up to 6 months to even 'bed down' so you're in for the long-haul with this dreadful illness.

    You may find it useful to get your Rheumy to offer you sessions in a specially heated swimming pool.(Local public baths are no good because they're too cold).I would take them up myself but can't be asked to do a 35 mile round-trip on two buses to get to my 'local' hospital.The benefits of heat permeate into the muscles,ligaments and tendons and reduce your body weight by a third or so to allow better mobility of both the OA and fibro.I wouldn't mind a hot tub but my GP won't issue a prescription for B&Q to buy and install one in my bungalow.

    There is also a specific organisation called Fibromyalgia UK which you may find worth a look on the web. Many people find their webpages excellent (no offence A.C.!) You are not alone and there are many here amongst us who will always be around to help you when you're feeling hacked off (which will be often). I do hope that the awful condition will settle down soon for you and give you a breathing space from time to time like mine does to take advantage of the less bad days we're all entitled to have.

    Enough from me because I could waffle on for England! Mines a coffee with two sugars if you're in the chair! Oh,don't forget the milk choclate HobNob!

    Big L 266