i’m having severe pains aches etc and told only to take paracetomal?? i’ve been diagnosed with cfs/me yet my dr’s don’t want to know does anyone else come across this insensivity.
Carron,
Ok here is my advice and I mean it…get another doctor immediately. I am soooo fortunate and thankful that I have such wonderful support in place that includes my Doctors and family. I literally fired one oncologist because she was so freakin insensitive to anything going on in my life that I felt my care would be severely inadequate. So again get another doctor. Life can be too long to feel pain and this sort of degradation. Good luck. Candy B
carron
I second cab’s opinion , ditch the doc and find one that will help you get well. anyone and everyone can heal it’s just a matter of finding out what all of the problems one is having and addressing each and every one. I was originaly dx’d with cfs but it turns out most of my problems including all of the pain are fibromyaljia related,true cfs causes verry little pain. I am on 2 protocols now and they are working wonders for me.If i can help in any way i would be glad to.
sincerly, don
Don as a nurse I am interested as to what your two protocals are,I’m always
looking for ways to help others and myself if possible, or educate. thanks
connie no more sick and tired.
On 5/23/07, blue51 cfs-cpt3348@lists.careplace.com wrote:
hi don thank you for your kind words,i am part of a pace trial looking into
cfs/me etc a bit of a guinea pig ha, i’m ringing around different dr
practices today so fingers crossed i’ll find a decent one x carron x
New, exclusive and FREE - Download Madonna’s “Hey You” now!
http://www.liveearth.msn.com
carron… i dont like sounding negative but i strongly advise you not to take part in that trial if it involves having to exercise.
I say this as exercise can crash a person and give them worst CFS and by the sounds of it you dont have a compassionitive doctor to go running back to if something went wrong and you got worst.
Before you do anything, I strongly advise for you to find yourself a good CFS doctor for good advice etc.
If you are in pain and that is stopping you from sleeping… that is bad for the CFS. Stress due to pain can make CFS worst. Paracetomal wont do much for CFS pain!!! If you want pain killers, find another doctor who will give them to you as you should have them for the CFS if you are wanting and needing them.
“,true cfs causes verry little pain”
One in fact can have fibromyalgia as one of the CFS symptoms (its common to have both)… and CFS can cause even more pain than JUST having fibro!!
Just imagine not only having just the FM as a CFS symptom to deal with with the muscle pain, painful joints and bone pain but also having IBS with painful constipation, food intollerances giving one cramping guts, throat as if one has swallowed nails, severe period cramps, severe headaches, light hurting ones eyes etc etc. This is what CFS can be like… not just having the fibro… A bad case of CFS is very painful…not just with the fibro alone and often severe coming in.
If you read my story… you will see Ive had extreme fibro and pain…all due to having CFS. It has hurt me just to move a finger at times… and ive been frozen on a bed for …painful to move, painful not to move…with everything extremely hurting. Its very untrue that one with CFS dont get severe pain.
One thing ive noticed is that many FM patients ARE getting diagnosed with CFS when in fact they dont have CFS. There is an overlap with symptoms (eg FM patients also also have mind fog and do feel a lot more tired than the average person) which can confuse some doctors when they are doing a diagnoses but the diagnositic guidelines are clear if doctors stick to them.
FM is diagnosed by having a certain amount of FM trigger points… CFS is diagnosed by having many other symptoms too… (and not necessarily FM symptoms thou they can be there too).
I would advise you not to shy away from exercise. Just don’t overdo it. I
was diagnosed with CFS 15 years ago. It is a constant battle but don’t let
it stop you. I am 54 years old and compete in Masters Track And Field. I am
currently ranked #2 in the USA and #13 in the world in thr Javelin throw. I
cannot always train at the level I want to but I train smart and listen to
my body. However I do not let my body dictate the mood of my mind. Stay busy
and stay positive. You can let CFS control you or you can control your CFS.
You have a choice and don’t let a Dr. tell you you can’t do something.
Always think POSITIVE!! Your mind is a powerful weapon in the fight against
CFS. Use it to your advantage not as something to come up with an excuse.
Best Wishes
From: taniaaust1 cfs-cpt3348@lists.careplace.com
Reply-To: cfs-cpt3348@lists.careplace.com
To: fuquajim@hotmail.com
Subject: Re: [cfs] pain relief
Date: Sun, 3 Jun 2007 04:03:03 -0400
Get pain meds and get them NOW!
I dealt with a bunch of doctors who kept telling me the anti-depressants
would fix my pain. All they did was make me sicker.
After a couple years of this, I got to a different doctor, who looked
through my medical records and asked that he saw where I complained of constant
pain as much as level 7 to 10, but he didn’t see what they prescribed for it. I
said “nothing” and he was horrified. “Not even VICODIN?!?!?!” “Not even
Vicodin.” He asked how they expected me to sleep and heal if they weren’t
doing anything for the pain so that I could sleep? And was not impressed with
their logic that anti-depressants would fix my pain, not when I was describing
such severe pain. At one point, I was dealing with level 10 all the time,
and had nothing more than hot baths for it because Advil had given me an ulcer.
Final analysis: because they refused to do anything about pain relief, I
will never return to work.
Then I went to a lecture by a pain management doc, who said that within just
48 hours, untreated pain can start to cause permanent structural changes in
the nervous system. Part of the theory of fibromyalgia is that it starts
just that way – doctors who think you should tough out an injury, unaware that
these changes occur.
I’m currently taking Tramadol at bedtime only. Seems to help tone down the
pain just enough so I can sleep more than an hour at a time.
Karen
www.CFSFacts.org – dispelling the myths and providing the facts (Click
through to join our Yahoo Group)
************************************** See what’s free at http://www.aol.com.