New - need some advice.

Discussion in 'Fibromyalgia Main Forum' started by Dizzi~, Jul 22, 2003.

  1. Dizzi~

    Dizzi~ New Member

    Hi everyone, I'm new to the board. I'm 20, female, living in the UK.

    I'm basically having some problems and I can't seem to get any medical help.

    I was diagnosed with CFS after glandular fever (mono) 8 years ago. I seemed to get better for a few years but over the past 18 months I have been deteriorating again. In the recent months I've been feeling very sick. I had to leave college, I'm severely depressed, I'm picking up infections every few weeks, I have a chronic cough that has lasted since a very nasty cold around 18 months ago. I'm particularly suffering from extreme fatigue and joint pain - especially around the knees which are very swollen. They are not particularly painful to bear weight on, but bending is extremely painful and they are tender to the touch. I'm struggling to climb stairs at the moment, and sleeping and sitting are very uncomfortable.

    I have a constantly inflamed lymph gland in the left side of my neck behind my ear and along my jaw. It is not painful but very noticable.

    I have been to see my doctor, who sent me for blood tests and chest x-rays. Both came back normal. He was very dismissive of my symptoms such as the swollen lymph gland - although he said if it got any bigger he would do a biopsy. He prescribed Prozac for my depression but refused to prescribe painkillers for my joint pain.

    I'm basically at my wits end. I don't know where to go for support and feel like I have to resign myself to the fact that I'm going to be ill and tired and in pain for the rest of my life without any hope of help.

    I'm exhausted and hurting and fed up of being sick all the time, and I can't seem to find anyone who cares enough to give me answers or offer solutions.

    I'm not even sure that my symptoms are concurrent with CFS anymore. I need a proper diagnosis, and would like advice as to how I should go about getting one without a sympathetic GP.

    Any advice would be greatly appreciated. I'm truly at the end of my tether and don't know how I'm going to deal with much more of this.

    Kirsty, UK
  2. Hopefloats

    Hopefloats New Member

    HI!! I am sorry that you are not feeling well. Some of your symtoms are those that I experienced before being diagnosed with systemic Lupus. The bloodwork that your doctor could order to help determine this is an ANA Profile. You would be better to see a rheumetologist..someone that specializes in Lupus and knows what to look for. I will hope that you find someone to listen, and do the bloodwork, and that you do not accept EVER that it is in your mind...
    My very best to you!
    Hopefloats
  3. Jen F

    Jen F New Member

    recommendations.

    Also, you might want to read a couple of books and start treating yourself using special diet and herbs.

    2 books that come to mind are:

    From Fatigued to Fantastic, a lot of people use the info in that book to start regimens that improve their functioning and for recommendations on addressing the sleeping problems, etc.

    Chronic Fatigue Syndrome, the Hidden Epidemic by Jesse Stoff, M.D. and Charles Pellegrino, PH.D. I found very interesting personally.

    may I say that the chronic cough, your cold and the joint inflammation problems make me think of food allergies as contributing factors. You might want to try to identify your triggers and avoid them, it may boost your immune system and reduce your inflammation. Mind you, there is a school of thought that if we can fix whatever is wrong with our bowels and/or adrenals, etc we wouldn't have these allergies....

    Good luck. Keep us udated as to your progress.

    Maybe don't eat too much dairy, by the way.

    jen F
  4. kmelodyg

    kmelodyg New Member

    I am so sorry that you are going through such a tough time. Many or even all of us have been through what you are going through to some degree. I know that it is very difficult to get your docor to listen to you. But if he dosen't, you HAVE TO FIND A NEW DOCTOR!! It is soooooooo important. If you feel that you need to be on painkillers, than you need to fight for them. There are good and bad ways to do that. But if you need relief, you should be treated for it!!!! I am 25 years old and have had FMS for about 2 years now. If you need someone to talk to, you can write to me anytime. My e-mail address is kmelodyg@hotmail.com. I hope to hear from you soon! Hang in there!

    Lots of love and BIG SOFT HUGS,
    Kathryn
  5. IntuneJune

    IntuneJune New Member

    Welcome to the board. Someone gave you reading suggestions, I have just about finished From Fatigued to Fantastic and would agree that is a good book to start with. Stay with the board, we learn a lot from one another.
    Fondly, June
  6. insomniac1

    insomniac1 New Member

    HI just wanted to say hi and let you know that you are not alone. we are all here for you and will listen and try our best to help in any way we can.that was some good advise to not give up keep trying, you will find the right doctor. kris
  7. Shirl

    Shirl New Member

    Hi Kirsty, welcome to the board. I am so sorry to hear how ill you are feeling, as so young.

    Like the others said, you do need to get to a good doctor that will take an interest in finding out what is wrong.

    We have many members here from the UK, and I know they will be very helpful to you with references.

    Again, welcome to the board, and stay with us, you will learn a lot and hopefully get some help too.

    Shalom, Shirl
  8. Dizzi~

    Dizzi~ New Member

    Hi everyone, thanks for the lovely welcome and all the advice.

    I've ordered the books mentioned today so hopefully I'll have some interesting bedtime reading.

    I've decided to apply to a different practice of GPs in my area to see if I can find a more sympathetic doctor, and I'm definitely going to ask for allergy testing and a referral to a rheumatologist.

    Thanks again. It's such a relief to get some helpful, informed advice!

    Kirsty
  9. Mikie

    Mikie Moderator

    You really need a good doc who specializes in CFIDS. At the point you are at, it is crucial for you to get good treatment and get it as soon as possible. Most docs just are not qualified or experienced enough to help.

    Love, Mikie