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Specialists Guidelines to living and dealing with Fibromyalgia...anyone

Posted , 3 users are following.

deb97936
deb97936

...else given the same advice?

The specialist that diagnosed me recently, I noticed has referenced his guidelines again as what to do to help treat the situation. Those points being 1. Understanding the concept. 2. Active Lifestyle. 3. Proper sleep hygiene. 4. The relatively minor role of pharmacotherapy in it's management. 5. Managing Stress and 6. Pain Management Program if necessary.    

 

1 like, 8 replies

8 Replies

  • Bee70
    Bee70 deb97936

    Posted

    Totally agree....but some can be difficult to achieve.  My main one that is difficult is the sleep.  I am working pn it and hopefully I will get a good night sleep soon.

    Thanks for sharing wink xx

  • christine26761
    christine26761 deb97936

    Posted

    Agree, good specialist..as deb says, sleep is often hard..as Chronic Fatigue Syndromeis quite normal to have also...all autoimmune, also being stress free is a real key to living with Fibro...be blessed, have a nice day..:-) ccc
  • deb97936
    deb97936

    Posted

    Over activity for me is a biggy....

    and I cannot walk in sand anymore without major flares because it whiplashes my spine, and the load on my muscle groups BANG!!

    Sleep what is that?  However I can go to the extreme once knocked out, but it's because I'm exhausted.

    Then back to 3 - 4 hours per night

    The OVER excited/stimulated brain makes me fall foul of sleep...

    Fibro Fog hits at absolutely ANYTIME...  and lingers round..

    So in regards to PAIN MANAGEMENT ... There is NO hard and fast rules that apply.  To maintain any cardio you have to be physical..  SO... your muscles have to complete some routine...  

    OR for the heart, maybe blowing up balloon the old fashioned way could give the lungs and heart a good work out...  with in reason of course.. lol..

     

    • christine26761
      christine26761 deb97936

      Posted

      I went to a pain clinic many years ago..even then..worth their weight on Gold..I only get bad flare ups now...no matter hiw bad they get..it's still great..but I've lived with these conditions for over 30 years now..there is some light at the end of your tunnel deb, be blessed..have a lovely day...by the way..where are you..I'm in Australia..it's odd that someone posts on here at this time of day...you must be local..:-) xxx
    • deb97936
      deb97936 christine26761

      Posted

      I'm across the Tasman...  haha.. NZ   

      I do use distraction techniques and it works, however the muscle fatigue and mental fatigue is a hard one.  

      When the pains get so bad and you can't stop locking up, it's a no goer..  Also it's kind of a compromised situation.  After my MVA I never stopped having neck, head and lower back issues, so the mutilevel compromise is awkward.  Hence the Fibro has set in.

      I used to be able to practice meditation 'a lot' even taught it, but after my MVA my head was a black void...  slowly came back, but left with these residual issues.  Just wish my eyesight would have come back to normal but sadly Nope, head trauma saw to that!  It's deteriorating reasonably fast to sadly.  The muscle wasting from Head Trauma round the eyes.  And I use Oil painting  as a means of Therapy...  need my eyes for that!  and my concentration.  

    • christine26761
      christine26761 deb97936

      Posted

      Aha..NZ...sounds just awful your condition from the MVA...I guess it's one day at a time....my Fibro came from a trauma too....most do....it's a horrid illness, can be just soo debilitating on it's own..let alone with anything else

      im just getting over a bad bout of asthma, it  went on for a whole month..went out today for 2hrs..now I feel like I could sleep for a month .I guess we grab the good days while we can.....sometimes we suffer for them sometimes it well worth it..have a lovely day deb..be blessed..:-) xx I'm in Tasmania..they say it's a lot like parts of NZ

    • deb97936
      deb97936 christine26761

      Posted

      OH you poor thing!  Asthma was my demon since birth.  My mother used to burn a lamp with some black goppie liquid in it, an old fashioned type of thing???   apparently since I was 3 weeks old.

      I used to go through 4 ventolin inhalers/month before my MVA.  When I moved out of Christchurch after my accident, I was later put on Tramadol for pain.  It was about 8 months after starting the Tramadol that I noticed my asthma stopped.  I could walk the distance to the mail box and back without any hint of a wheeze, and it was a long distance to the mail box..  I could laugh, walk into rooms with various temps and no wheez.  I don't really drink, but if I ever had a mouth full of wine or beer I'd instantly be wheezing badly.  I still have an inhaler handy for that just incase situation, which I have had two, both when visiting back in Christchurch.  However been in remission since...so very grateful..  I was very much a friend of the old nebulizers!...  I don't miss asthma, not one bit!  I have often wondered if it is the Tramadol that has helped the asthma??  because it works on the spine first, and our nervous system is a big player/factor in asthma I reckon.

      What are your triggers ??  

      I've never been to Australia.  But very grateful I got to go to Canada and the briefly the States. All chances of travel are blown out the window for me now. I grieve a bit over that. But such is life aye.  

      I had a friend that wanted me to move over to Tasmania when I was about 20.  But I had my young daughter and I wasn't sure if it was going to be a solid thing to do..  as my friend was a bit flightly 

      Take care christine..  you are blessed!   xx hugs

    • christine26761
      christine26761 deb97936

      Posted

      I think just about anything and everything is a trigger..only had fir about 29 yrs...I'm always quite bad this time if the year..seasonal, but if my husband uses a certain cleaner in the bathroom it sets me off too..as dies some

      parfumes .grr...I only get it bad once a year but-usually this time.....know what you mean about travel now..we go anywhere the car will take us..the ferry to the mainland is great..overnighter..lovely ferries...great accomodation and food...but once there, we are still in Australia...mind you there is  everything you could want ..from snow fields to crystal blue beeches and white sand....I should be a travel embassador..lol....I'm still on the nebuliser will be for the next week...I am allergic  to ventolin so I take these other puffers, I take them twice a day all year...glad it is almost gone..had it a month now just want it completely out the way...as we go

      to the mainland in Oct for a holiday....be blessed deb....have a lovely day..it's sunny here about 15 today...not bad..getting warmer..:-) xxx

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