new here

Discussion in 'Fibromyalgia Main Forum' started by chloeuk, Oct 19, 2006.

  1. chloeuk

    chloeuk New Member

    I just wanted to say hello and indroduce myself. I am 33 years old and live in Australia although I am originally from the UK. I have been unwell since Jan this year, although I did have some symptoms about 2 years ago which now I look back are similar.

    My illness started with a virus, within a month my joints throughout my whole body had stiffened and I was in alot of pain...I have a history of psoriasis so drs thought it could be psoratic arthritis. Then I started geting neuro symptoms like numbness down one side, dizziness, a feeling of being cold on the inside, problems with urinary function(retention). I also have tachycardia and overwhelming fatigue and in the last 3 months clinical depression.

    The problems with my joints settled after a couple of months and now just comes and goes. also have chronic indigestion and nausea. I was on alot of painkillers and sleep meds because I was not sleeping at all but as the depression and pain worsened I began taking too much of my meds and stopped taking them 2 months ago, which was a nightmare in itself.

    I saw loads of specialists, rheumy,cardiologist, immunologist. Heart is ok apart from resting hr of over 100, also developed high cholsetrol even though I have lost 70lbs in weight. The immunologist tested me for everything, lupus ms etc and all came back clear so he said probably cfs, told me to take ssri to help with symptoms...it didnt help so I am no longer on it and just became disallusioned with drs and feel like no one can help me.

    In the last couple of weeks I am seeing symptoms becoming worse and I just always feel so unwell and I cant see an end to it and dont know where to turn. The only thing they have found wrong with me is a b12 defiency, my level is 204 so just under the normal range. I had a b12 injection and have another in 5 weeks. I suffer with a lot of pain as I have disc degeneration but I am not allowed to take opiates and need to stop the nsaids I am on because of my stomache...I am thinking of going to see the immunologist but I am scared because for someone to tell me that they cant do anything could be enough to send me over the edge...I am very depressed and my usual AD isnt working for me and I have changed 4 times in the last 2 months and now I am just so exhausted all of the time. My family are all in the UK and my poor husband is so sick of it, my glands are swollen again and I am terrified the joint pain will become unbearable...just dont know what to do...any suggestions would be great.

    thanks for reading
    Chloe
  2. ladykew

    ladykew New Member

    Hi Chloe,

    Welcome to the message boardsl I'm sorry you have so many things wrong with you, but we can certainly be support to you for your cfs.

    Have you thought of finding a doctor who treats CFS and maybe trying a different type of anti-depressant? Than might help a lot. There are other things he/she might recommend to make things easier for you.

    Hope you ejoy the FMS/CFIDS Message Boards and can get some relief.

    Regards, ~~~LadyLew
  3. Aeronsmom

    Aeronsmom New Member

    I just wanted to Welcome you to our little home here, i'm sorry that you have this DD but know that we are all here to help you with any questions that you may have,

    We may not have all the answers but know that we know what you are going thru. This is a wonderful place to come to.

    Take care, and love to all, Ann
  4. cct

    cct Member

    Welcome to ImmuneSupport Message Board! This is a great place to find help and support.

    I am sorry that you are felling so badly and I hope that you are able to find some professional assistance.

    Finding a doctor who is knowledgable about CFS is a problem for many of us. They are out there, you just have to find them. Also, I have found that sometimes the doctor may not believe that CFS really exists, but the doctor's nurse practioner does. So even in the same doctors office, you might find one person who will help and one person who won't!

    My CFS is worse in the winter and better in the summer. Since you are moving into summer, maybe you will start feeling better.
  5. Redwillow

    Redwillow New Member

    Welcome Chloe to this wonderful message board.

    There are some amazing people here. It is awful the way these conditions are so isolating.

    The people here are wonderful and make you feel very welcome.

    So join in, ask questions, vent when you need to.

    hugs Redwillow
  6. chloeuk

    chloeuk New Member

    for the replies..I woke up this morning and I am feeling very stiff and in pain and so so tired..its great that there are people that understand but when I read stories of people having cfs for years and years I go to peices...how do you cope..I can not stand the thought of being ill like this for years, this year has been bad enough..how do you do it????
  7. suz45

    suz45 New Member

    Welcome Chole:

    Sorry you had to find us this way, however you have come to good place to find support some ideas and maybe some answers. we all try to help each other, each person is so unique, what may work for them may not for you. But that is how we learn to cope. Its also nice to know we are not alone with these disoders....That can be so overwhelming and scary.

    Regarding your pain...Have you considred a pain specialist or clinic to address the level of pain you are experiencing. also this will continue to affect your fatigue, we use so much energy when in pain both physically and emotionally. Hopefully, this site will provide you with a starting point...

    let us know how you are doing.

    Soft Soft Hugs,

    Suz45

  8. Spacey_sjca

    Spacey_sjca New Member

    Hi Chloe,
    Aiyiyi. Most FMS/CFS sufferers aren't diagnosed for 3-5 years, so it's no wonder very few of us have faith in the medical community. Thank goodness for the internet. I work very, very hard to become educated on drugs, physical therapies, alternative treatments, etc.

    It's a life change. I had to grieve the loss of the old me and it took at least a year of serious upset before I got somewhat used to my truncated lifestyle. Now I'm building new hobbies and interests that I can pursue without causing a crash. Bad days are harder to bear when I get in that loop of "I'm too young to be like this! I can't stand another 40 years like this! Yada yada yada" But that's when we're weakest and find it hardest to endure, so when it's over, I try not to beat myself up for succumbing.

    I highly recommend Cognitive Behavioral Therapy. I saw a psychologist for about 3 months and learned to recognize when I was being hard on myself, or coloring things black - generally speaking to myself in tiny, but insistent negative and devilish voice.

    "I have faith in a future I cannot see". Write it on a post it note and stick to your bathroom mirror. My mantra for months.

    I have found it's hard to get the doctors to treat me for more than one thing at a time, but they really need to tackle both the DD and the CFS. I've been seeing a non-force chiropractor 3x a week for 6 months and I'm really getting some improvement that I'm sure is from the steady and gentle treatment. In addition, I see a physical therapist who specializes in cranio-sacral therapy and myofascial release, as well as Pilates and Yoga. So she helps with that body stiffness and general pain while teaching me breathing techniques for relaxation and stretching so I can get out of bed in the morning.

    Allow your doctors time to sift through the many, many options available. It almost always requires some searching and bad experiences with side-effects before you find the right combination of drugs, diet, and exercise to improve your quality of life. And don't ever be afraid to tell you doctor what you think will work or that you can't tolerate something. If they respond badly or don't listen - just go get another one. Just like you would do if you had a bad experience at a restaurant. No need to feel guilty or loyal to a doctor who isn't serving your needs.

    Finally, dear, be good to and trust yourself. Try your best not to let guilt coerce you into activities that are beyond your strength.

    Hugs
    Spacey

    [This Message was Edited on 10/20/2006]
    [This Message was Edited on 10/20/2006]
  9. tinktink

    tinktink New Member

    I am a newbie too. I dont have any sage advice yet but just wanted to say hi. Hope you find lots of support here. Best Wishes Diana