What do I do now?

Discussion in 'Fibromyalgia Main Forum' started by ilikasip, Jan 17, 2006.

  1. ilikasip

    ilikasip New Member

    Am I recovering from FMS ?


    It has been suggested I may have been suffering FMS in excess of 25 years and CFS 8 years or more. Due to both conditions getting worse over time, I had to make a very hard decision ' Premature Retirement staring me in the face ' at 57. Unable to continue working and adding to the 44 years I already had completed, a clean history with no recorded sick days taken. 'Retiring' due to illness was very hard to come to grips with. I, like all, FMS/CFS sufferers have experienced the same 'Help Me' Doctors, Ruematologists, Pain Management, Naturopaths, Acupuncture, Massage, Exercise and Psychologists. Pink, Blue, Yellow and White, Pills, pills and more pills, Pain Killers, Depression Medication. Yes ! sounds all so familiar and what about 'go home and learn to live with it' !!!!!!

    Early good advice given to me from my doctor... Learn to understand my body and act accordingly when experiencing a bad day. This enabled me to cope a little better during these hard times. I was not going to give up. In 2002 I joined a FMS Self help Group, this was a very wise thing to do. A marvelous group of people I have met over time and ever so willing to help each other, especially to those who needed that little extra help to cope. Recently I was asked if I would stand as the Group Leader. I hope I can continue the success this group has achieved providing information and help to those in need. Now for me! attending this help group opened the door to see a doctor who devoted his practice to Treating Patients with CFS. I have responded reasonably well to his treatment. ( Lamictal / Rivotril ) I am no longer taking this medication, my last appointment with this doctor June 2004. Presently I am coping with the CFS, Yes I still have my bad days and if I act by reading the signs my body send me, I manage satisfactorily. Life has been a little more pleasant if you know what I mean !

    For me FMS has been out of control and I was not coping very well at all. The ever present aches/pain not responding to anything that I tried. I have over time I suppose, learnt to live it. Accepting the good days when they came around ( what a bonus ) resting the best I could on the bad days.

    Then something happened Friday 23rd. December 2005. My wife and I rose early from bed (bit of a struggle) to go to the market and do the final of our xmas shopping. We arrived at the market 7.45am and by 1.30pm we made our way home we had finally finished. I was really feeling the effort I made in going to the market, by 2.30pm I needed to lay down and rest, not feeling to good, oop's I've done too much. At 5pm I woke feeling like I had been hit by a Mack Truck and would you believe it? Flu like symptoms. The following week I was not improving but, getting worse, come saturday 31st. December (new years eve) for some! I just had to go to the doctor, unable to see my family doctor, I had to see the GP on duty. The doctor quickly diagnosed " pneumonia " xrays needed for confirmation. (confirmed)
    The doctor prescribed a higher than the norm dosage of medication. 2 days into the course of medication I noticed a definite reduction in Aches/pain levels of the FMS. This is something I just don't believe, no, no "what's going on" I am saying to myself. I have not experienced this positive reaction before.
    I have finished the medication (9th Jan).To-day is the 17th. January 2006 and I am still experiencing the lower aches/pain readings. I shall give you an idea of my levels: Resident aches/pain meter readings (1-10) Mine usually a steady 6, with a good day reading of 5, a bad day reading of 9+ These readings prior to the medication prescribed for me. Presently I am experiencing a significant drop in aches/pain levels = 2-3
    Why is this so? is it the medication? Coincidence?
    I got in touch with the clinic I attended and was able to meet the clinic manager and discussed my positive reaction I had re FMS.
    The manager advised I should.....

    1: Notify the Pharmaceutical company
    2: Notify the Monash Medical Research Clinic (Aust)
    3: Notify the Treating Doctor FMS/CFS

    I notified all the above.
    Responses from the above......
    None from No.1
    Little/None from No. 2

    No.3 Treating FMS/CFS Doctor Personally rang me at home Tuesday 17th. Jan. '06 The doctor expressed his professional interest in my positive reaction I had to the medication given to me for the pneumonia and, the fact that he is aware of the medication and it's connection with reduction aches/pain levels. This doctor indicated further personal information be made availble to him as I record my levels. I have indicated my keen interest and in following up any information I may give him or receive in the near future.

    Please, Please tell me it's not a dream.
    Regards VK (ilikasip)
  2. lin-z

    lin-z New Member

    I am so happy for your relief but I must be nosey and ask you what medication the doc put you on for pneumonia..

    Whatever happened I hope you continue to improve !! Hey why not??? Why not you??? Best to you!!!


  3. ilikasip

    ilikasip New Member

    Hello to you both, lin-z and ggiggi. Thank you for your welcome. Yes ! I can share with you the information.
    1: Lamictal/Rivotril, this medication is primarily used in the treatment for epilepsy ( I do not suffer with condition )
    2: The medication I was put on was.... Amoxycillin ( clavulin Duo Forte ) 875mg/125mg x 2 per day.(Haemophilus Influenzae, Meningitis, Streptococcus Pneumoniae, Moraxella Catarrhalis ) My doctor who has shown interest is actually researching the possible useage of higher doses and it's link????? I have my fingers crossed
    Cheers vk (ilikasip)
    [This Message was Edited on 01/17/2006]
  4. sapphire

    sapphire New Member

    You might want to consider the possibility of your FM symptoms coming from an infection. That would explain why the amoxicillin helped you. I have heard of it helping lots of lyme patients. Have you been tested?

    Most of us that antibiotics help find out they have a hidden infection. Look up the symptoms of lyme and you may see yourself just like I did. I was misdiagnosed with FM/CFS for 15 years. I am now being treated for lyme and seeing improvements and have hope of getting my life back. Hope your pain level stays low. I have very little pain now compared to what I used to have.

  5. ilikasip

    ilikasip New Member

    No problems with the questions.
    Here is a copy of suggested path I should take.....

    We shall begin treatment of the channelopathy with LAMICTAL, which improves sodium channel function. This is directed toward lessening fatigue, pain and increased sensitivity, and improving quality of sleep. The role of lamotrigine (lamictal) is to control the leak through the pores by ... normalising sodium channel function. This will result in less energy being spent by the cell in looking after itself, and so there will be more available to do normal functions. Therefore be less fatigue, and a normalisation of functions, especially of the nervous system. The taking of Rivotril was a marrige of the two drugs (so to speak) and the doctor his research etc using these medications for his treatment of CFS/FMS these used on me were a small arsonal of available medications he could use. During the course of treatment ongoing blood tests/monitored. He was very complete with his treatmentand, he kept me informed at all times.
    Bottom line ! his methods it seems have for me, stabilised my CFS. If I look after myself and read the signs I manage reasonably well. I have pages and pages of infomation re my/his treatment (inches thick) believe me. lol. With the antibiotics it seems I noticed a change within 2 days!!!! And as yet, steady on 2-3 levels.
    Cheers for now vk(ilikasip)
    [This Message was Edited on 01/17/2006]
  6. ilikasip

    ilikasip New Member

    Thank you, it seems I am clear, tests coming back negitive. BUT, I have a deep seated belief in the suggestion of Virus/Infection of some kind.??????? What's that saying!!!! when we live in the forest, sometimes we do not notice the trees. lol
    Cheers vk(ilikasip)
    [This Message was Edited on 01/17/2006]
  7. sapphire

    sapphire New Member

    You are very welcome. Please don't forget how unreliable the lyme tests are. I've heard of some that have had up to 3 negatives and then finally a positive. Lyme is a clinical diagnosis, too. The LLMD's don't go by the test results they go by symptoms. I'm sure you've already heard all this though.

  8. ilikasip

    ilikasip New Member

    I concur with you.
    Well! today is thurs 19th. Jan. and I finished the medication monday 9th. Jan. 9 days in positive territory. I must go now, the wife and I are going shopping. Would you believe I've a spring in my step lol . Be back soon bye for now vk(ilikasip)
  9. ilikasip

    ilikasip New Member

    It's interesting...(Lamictal/ Rivotril)
    Prior to the doctor prescribing this medication!!!!!!
    Apart from all obvious symptoms FMS/CFS There was the frequant Migraine attacks lasting 2-3 days, relief somtimes when I vomitted (yuk enough of this).... Let me continue

    I tell not a lie..... I have not experienced a migraine/ headache since before the medication. (touch wood)
    Bye for now vk(ilikasip)

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