Questions...

Discussion in 'Fibromyalgia Main Forum' started by chloeuk, Apr 14, 2006.

  1. chloeuk

    chloeuk New Member

    I have been unwell since January this year, symptoms have been changing, started with flu like symptoms with severe joint and muscle pain...saw a rheumy who said he thinks I have cfs...but I have read you must be ill for 6 months before a diagnosis of cfs??

    Other symptoms I have had are extreme tiredness, numbness and tingling initially down one side but now randomly, nausea, dizziness,weakness in muscles, forgetful and generally brain feels like it cant work properly,sore throat, swollen glands, weight gain,tremor, headaches(worse than usual)rash on my face,racing heart rate,high fluctuations in blood pressure.

    tests I have had, full blood tests..inc thyroid, diff viruses that have been around locally(ross river) c-scan(after numbness started)ecg...seen a rheum, cardiologist and seeing immunologist in a couple of weeks...having cardiology tests next week..stress test, 24hr HR and BP monitor.

    Medications..amitripline have been on for years for migraines, stemzine(for dizziness)imovane for sleep(also been on for months before illness began)co-codamol for pain, mobic for joint pain,anti inflammatories for pain...medicines I have tried but had to come off...inderal for hr and bp, diazepam for muscle pain, prednisone for joint pain, 3 weeks of high dose short term, anto biotics.

    My symptoms keep changing...with each one I feel unable to be part of any normal life, first debilitating joint pain, then dizziness with each on eI think if only they could make this thing go I will be able to get better and then it goes and something replaces it...but I guess overall the tiredness is the thing that is really stopping me functioning...right now dizziness, numbness and shakyness and feeling sick and tired with a severe headache is what is stopping me...so where do I go next, what can I do...I rest, I push myself I dont know what to do any help or advice would be great...also anyone in Australia who is a sufferer would help..I only moved here last year and although health system seems good availability of drugs isnt so good..I would love to get some help tho from anyone.

    Chloe
  2. blizzybear

    blizzybear New Member

    LISTEN TO YOUR BODY, DO NOT PUSH YOURSELF, REST WHEN YOU NEED TO. WETHER THIS IS TEMPORARY OR LONG TERM, THE ONE THING I LEARNED IS I HAVE TO LISTEN TO MY BODY OR YOU MAKE THINGS WORSE BY PUSHING. I HAVE HAD CSF AND FM FOR 8 YRS. I HAVE SEVERAL OF YOUR SYMPTOMS AND AM CONSTANTLY HAVING NEW ONES OR CHANGING ONE. ONE THING SOMEONE SAID WHENI FIRST GOT SICK WAS YOU WILL NEVER FEEL THE SAME, ALL OF US HAVE SOME SIMILAR SYMPTOMS AND SOME ODD ONES . I DO RECOMMENED YOU HAVE THE RHEMO RULE OUT EVERYTHING THEY CAN, AND A NEURO ALSO. CFS AND FM CAN MIMIC DISEASES SUCH AS MS, LUPOS, PARKINSONS, ETC. SO IT IS GOOD TO BE TESTED FOR ALL THESE TO MAKE SURE YOU DO NOT HAVE ANY OTHER PROBLEMS, IF YOU DO NOT FEEL YOUR DR IS SATISFYING YOU, GET A SECOND OPPINION. IT IS TRUE YOU COULD HAVE A VIRUS CAUSEING THESE SYMPTOMS AND IT CAN HANG AROUND FOR A YEAR OR MORE, AND GO AWAY, BUT USEALLY IF IT IS SIX MONTHS OR MORE THEY CALL IT CHRONIC, AND IF IT LASTS MORE THAN THREE YEARS CHANCES OF IT GOING AWAY ARE MUCH SLIMMER. IT SOUNDS LIKE YOU HAVE ENOUGH PROBLEMS ALREADY WITH HEADACHES, I HOPE THIS WILL PASS, BUT FOR NOW GO WITH YOUR GUT FEELING, AND JUST READ ALL YOU CAN AND EDUCATE YOURSELF, WEB SITES ON CHF, AND FM ARE REALLY HELPFULL. I MOSTLY HAVE FATIGUE, I GET MORE PAIN AND FLU LIKE SYSMPTOMS WHEN I PUSH MYSELF AND DO NOT REST ENOUGH. RESTING, TAKEING BREAKS IS A BIG KEY WITH CFS, PACE YOURSELF. I HOPE THIS HELPS SOME, HANG IN THER, BLIZZY
  3. rockgor

    rockgor Well-Known Member

    CFS is a mysterious disease w/ a variety of symptoms. I have had the big four these last 25 years: sleep disturbance, lack of energy, depression and brain fog. There are lots of others.

    This board is a friendly place, and there are lots of articles, etc. to read.

    Good luck.
  4. chloeuk

    chloeuk New Member

    to say I am also having problems with my bladder, basically no pain but feels like I need to go alot, bladder is full but muscles too tight, takes ages.

    Thanks for comments...I am really really scared with the prospect of not getting better...I have had clinical depression in the past because about 3 years ago I had a disease called pustular psoriasis where you get blisters only on your hands and feet and I couldnt walk for over a year, I was put on to immune supressant drugs and I have been in remission a year from that and as a result I was really depressed, so now although I feel very down I wont say the words depreesed because the thought is just too scary to imagine after 3 stays in hospital...cant believe this is happening to me, think I must have done something bad in a past life to be so chronically ill for a second time...I always feared the skin disease returning, thought that as long as that was ok then I could handle anything...life is so cruel...any other tips or words of support would be great.
    Chloe
  5. chloeuk

    chloeuk New Member

    I have been tested for ross river but unfortunately its not that...where abouts in Australia are you?

    Chloe
  6. NyroFan

    NyroFan New Member

    Chloe:
    It is good you are checking everything before getting an initail diagnosis of CFS. To me, it sounds like you have it: but then again, I am not a doctor. I understand all you are going through, but push on we must if we are to tackle all that is thrown our way. Persevere and you will be oh so much better off. Have as peaceful of a day as you can.

    nyrofan