SICK of it

[Magick]

nevermind

[Open Again]

My mother is the same way.... as soon as she getts better with one it is something else.... i handled it by moving out of the same State she was in. I tried for years to help, then got angree because she always pulled on me, then i just found compassion. How misserable my mother must be. How unfortunate that she can not find peace and happieness unless she is in pain. But i am also 32 now with a daughter of my own. I just walk away and send love from afar.... it is all i can do to maintain my own sanity.

[Flar's Freyja]

It sounds like your mom could have Fibromyalgia or a related condition if her physical illness is not rooted in mental illness. People with fibro frequently suffer from depression and other mental/emotional disorders. I know - I was diagnosed with it several years ago after being treated by doctors as though I was lazy, neurotic or faking it. I'm posting this letter which was posted by a member on my fibro support list, Wise Witches Fibromyalgia Support (http://WiseWitchesFibromyalgiaSupport@yahoogroups.com) some time ago:

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me but you don't
understand me. I was not as lucky as you. I inherited the
predisposition to chronic pain, fatigue and forgetfulness. I was
diagnosed with Fibromyalgia (FMS) after months, years or even
decades of mysterious physical and emotional problems. Because you
didn't know how sick I was, you may have called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to
help you understand how different I am from you!

THINGS TO KNOW ABOUT THE SYNDROME

1. FMS is not the newest fad disease. In fact, it isn't a disease at
all, and it isn't even new. In 1815, a surgeon at the University of
Edenburgh, William Balfour, described Fibromyalgia. Over the years,
it has been known as chronic rheumatism, myalgia and fibrositis.
Unlike diseases, syndromes do not have a known cause, but they do
have a specific set of signs and symptoms which, unfortunately for
the patient, take place together. Rheumatoid arthritis and lupus are
also syndromes.

2. The many physical and emotional problems associated with FMS are
not psychological in origin. This is not an "all in your head"
disorder. In 1987, the American Medical Association recognized FMS
as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch
potatoes. They can be disabling and depressing, interfering with
even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by
inflammation. Taking your arthritis medication will not help me. I
cannot work my pain out or shake it off. It is not even a pain that
stays put. Today it is in my shoulder, but tomorrow it may be in my
foot or gone. My pain is believed to be caused by improper signals
sent to the brain, possibly due to sleep disorders. It is not well
understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state
of exhaustion. I may want to participate in physical activities, but
I can't. Please do not take this personally. If you saw me shopping
in the mall yesterday, but I can't help you with yard work today, it
isn't because I don't want to. I am, most likely, paying the price
for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it
fibrofog. I may not remember your name, but I do remember you. I may
not remember what I promised to do for you, even though you told me
just seconds ago. My problem has nothing to do with my age, but may
be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times
in a crowd, I am not purposely targeting you. I do not have the
muscle control for that. If you are behind me on the stairs, please
be patient. These days, I take life and stairwells one step at a
time.

5. My sensitivities - I just can't stand it! "It" could be any
number of things: bright sunlight, loud or high-pitched noises,
odors. FMS has been called the "aggravating everything disorder." So
don't make me open the drapes or listen to your child scream. I
really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am
a man, I sweat...profusely. If I am a lady, I perspire. Both are
equally embarrassing, so please don't feel compelled to point this
shortcoming out to me. I know. And don't be surprised if I shake
uncontrollably when it's cold. I don't tolerate cold, either. My
internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in
bed or in the house or die. I have lost count of how many of Dr.
Kevorkian's patients suffered from FMS as well as other related
illnesses. Severe, unrelenting pain can cause depression. Your
sincere concern and understanding can pull me back from the brink.
Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to
give up my job, work part time, or handle my responsibilities from
home, I'm not lazy. Everyday stresses can make my symptoms worse
and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is
not by choice. My body is not your body. My appestat is broken, and
nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy
me. My massage is not your massage. Consider how a massage would
feel if that charley horse you had in your leg last week was all
over your body. Massaging it out was very painful, but it had to be
done. My body is knot-filled. If I can stand the pain, regular
massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally,
don't assume I am well. I suffer from a chronic pain and fatigue
illness with no cure. I can have my good days or weeks or even
months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike.
That means I may not have all of the problems mentioned above. I do
have pain above and below the waist and on both sides of my body
which has lasted for a very long time. I may have migraines or hip
pain or shoulder pain or knee pain, but I do not have exactly the
same pain as anyone else. I hope that this helps you understand me,
but if you still doubt my pain, your local bookstore, library and the Internet have many good books and articles on Fibromyalgia.

[Semele]

Well it does sound like she needs some therapy or intervention by a qualified Psychiatrist. They are medical doctors as well and can attempt to discover what is causing the depressive behaviors, whether it be psychological or medical in nature. Sometimes inhouse treatment is needed for severe depressions/illness.

The only thing you can do is to try and be patient with her. Most folks would never choose to live like this. it is something she most likely cannot control. Just try to be supportive and get enough rest and away time for yourself. You will all be in my thoughts and prayers.

[libragrrl]

It seems like my mom is always sick..She has been sick for almost 2 years now...Shes been to a psychiatrist,Medical Doctor,Nuerologist, and god knows what else, no one can seem to find anything wrong with her...I dont know whats going on with her and It is Literally driving me insane now..It makes me sick to go home and see her being like that day after day after day...She does have Manic Depression and BI Polar,but that has nothing to do with the unkown illness she has..I have had the thought that she is faking it but I jus dont know anymore.. Im SICK of her being sick all the time.. She cant work cant drive and my grandmother and me are taking care of her... Its hard on my grandmother who is retired working a part time job now and im working also and we still barely make it.. Even if she wasnt sick a day as soon as something doesnt go her way or someone makes her mad she gets deathly ill.. Seems kinda strange huh? Theres so much more but im going to end it here.. Anyone have ANY Idea on what I could do????Tell me your opinions please...

Just curious, has she been tested for Lyme Disease?

[Magick]

hm Fibromyalgia huh? Ive never heard of that I appreciate all of you voicing your opinion Ill have to check into that with her doctor and psy doctor.. In the mean time ill try not feeling so guilty for trying to live my own life and not being RIGHT there with her every minute........

[Magick]

Lyme diesease?? Isnt that something Animals get??? but anyways no I dont think she has... Never know though I would imagine they have took about 2 gallons of blood over the past 2 years...haha

[libragrrl]

Lyme diesease?? Isnt that something Animals get??? but anyways no I dont think she has... Never know though I would imagine they have took about 2 gallons of blood over the past 2 years...haha

No, people get it too, and it can mask itself as many diseases.

Read my fiance's story here (http://www.libragrrl.com/forums/showthread.php?threadid=10020)

[Magick]

hm it wouldnt let me read the story...Interesting I didint know that...Ill bring it up along with Fibromyalgia next time she goes...THANK YOU ALL for your advice and opinions... :)

[libragrrl]

try again, I changed my forum settings, just to get a general idea.

[Flar's Freyja]

hm Fibromyalgia huh? Ive never heard of that I appreciate all of you voicing your opinion Ill have to check into that with her doctor and psy doctor.. In the mean time ill try not feeling so guilty for trying to live my own life and not being RIGHT there with her every minute........

Many doctors don't even believe that Fibro exists. Most the members on my list were originally diagnosed with something else - my doctor thought it was lupus, another possiblity.

There's also an article in the recent issue of Woman's World suggesting that similar symptoms could come from food allergies.

I know it's frustrating to try to care for someone with these symptoms - I always felt like I was only half a mother to my kids and often wish I could sue several doctors for what they let me put myself and my family through for the nine years I was undiagnosed.

[Jenne]

Hugs Guys. Chronic pain is such a hard thing to deal with. I think we aren't equipped to cope with it yet as a society. And I'm a firm believer in healing within helps the healing without.

Hugs, Magick. Hope you can get some rest. Don't feel guilty for trying to live your own life.

[Magick]

INteresting story...Ill have my mom read that...Thanx

[libragrrl]

Fibromyalgia, chronic fatigue syndrome, MS, ALS, as well as hundreds of other conditions, many of which have psychological or neurological symptoms on top of physical symptoms are often caused by infectious diseases though they are still being studied. Lyme disease is often constantly misdiagnosed as these diseases and has been found in all but one state in the US (OK is included in "all states"). Definitely have her see an infectious disease specialist who specializes specifically in these mystery illnesses. The tests for Lyme Disease and these other conditions can often show up negative even when the person is infected, so you need to find specific laboratories that have a high success rate.

If you need help finding a DR. with high qualification and experience in infectious disease with access to a good laboratory, you can search www.webmd.com and they have a section for finding dr's based on their experience. Look at how many years they've been in practice, look what schools they attended, look what organizations, special interests, and awards they've achieved. These are all good signs. This shows the dr has high experience and are most likely is very compassionate. You may wish to start with a female Dr first to do your broad search, and then narrow it down to a male for specialty care when you do find out what's wrong.

Females tend to be more compassionate and more willing to do the broad search compared to males who are often close-minded or will dismiss even taking a broad search, because they tend to put borders around the symptoms rather than imagine the possibilities that there are things they don't know that are beyond their scope.

In conclusion, look at all conditions which match her symptoms. Apparently there is an inflammatory connection or at least a neurological connection. Lyme seems to fit the profile, but many other diseases also do, including fibro and chronic fatigue. An infectious disease specialist can narrow that down. Find a good one because they are the detectives of the medical community.

Don't dismiss her symptoms as malingering or hypochondria. She'll need support from family.

For additional information on Lyme and the conditions it can often be misdiagnosed as, go to http://www.lymealliance.org and go to the section on medical articles. By now she would have chronic lyme if she has it. So go to that section and read cognative impairment, depression, suicide, and other articles related.

Hope this helps.

[Old Witch]

Kenneth, my husband, and my son Kenny both have Lyme disease, caused by the bite of a deer tick. You get treated for the disease but you never really get over it. The after effects stay with you the rest of your life.......chronic fatigue, pain in all your joints, swelling.......

[libragrrl]

That's only if you don't find the right doctor to continue long-term antibiotic treatment. The symptoms you've mentioned are caused b/c the infection is not gone yet. Very few doctors in the medical community will treat long-term chronic lyme disease, but if you continue with the treatment, which is usually tetracycline (8 months), Biaxen/Plaquenil (8 months), and then the cycle begins all over again with the tetracycline, etc. These cycles are continued until the disease is completely gone, which depends on how long you've had the infection for. The longer you've been infected, the longer it's going to take. Some people have to stay on treatment for years... 6-8 years, although most infections are usually beaten within 2-4 years if they're chronic. The testing that's been done on chronic lyme disease by the majority in the medical community has only focused on a 2-4 week antibiotic protocol, so it's no wonder people stay sick after treatment is discontinued. :(

The Lyme bacteria (spirochete) is ni the same exact family as syphillis, and requires the same treatment protocol.

[libragrrl]

btw - old witch, if your husband and son still suffer symptoms like the ones you've mentioned, find a very good lyme specialist. If you need any help finding one, let me know :)

[MoonRaven]

If they look into absolutely EVERYTHING and still can't find a physical or medical problem, and they're constantly on at you about being sick, you might want to seriously consider the possibility of something like Munchausen's Syndrome. (http://www.allsands.com/Health/Diseases/munchausensyndr_xda_gn.htm)

[CalliopeHellice]

My mom is ALWAYS complaining about various "illness"...now she has this "cough" that "makes her gag". So she's constantly running to the bathroom pretending to gag.

The problem is I have LOTS of documented problems--hiatus hernia, mitral valve prolapse (which I can feel because I have a thin chest cavity), and arthritis through my right hand and in my right ankle, chronic migraines and tension headaches, and a pinched nerve in my right arm (that numbs three fingers in myhand, and causes pain in my neck and back, as well as my arm).

EVERYTIME I even slightly mention some pain, she says "oh yeah, I have that too."

Like, hiatus hernia (esophagile flap doesn't go down sometimes)...if it flares up, it feels like a heart attack...the doctors don't want to give me medication b/c I'm so young and it might get wose when I get older. So it helps to eat something and drink something warm (it eases the flap back down). So I'll go into the kitchen to get something to eat and drink, and she'll ask what I'm doing, and I'll say "My hiatus hernia is acting up," and my mom will say "Oh, mine has been alllll day".

SHE'S NEVER HAD IT!

It's irritating...it's just a cry for attention. I always say, you can have all my problems if you want them...I'll gladly give them up.

[witchsmacked]

Definitely check out the possibility of Chronic Fatigue Immune Dysfunction Syndrome and Fibromyaglia. I have both. It took five years, seven doctors and a psychologist before my gynecologist of all people figured out what was wrong with me. I have days when I am feeling absolutely wonderful, have all the energy in the world. The next day, I feel like I've been run over by a Mack Truck. Because I choose to fight through it instead of letting it take over, people think I'm faking. A lot of my co-workers give me advice of what to take for it. I've had a lot of people (including my family) accuse me of being a drama queen. Believe me, as a former athlete and overall active person, I would NEVER fake feeling this way.

My general practitioner has taken over my care, with the help of a colleague who has done a lot of work with patients who suffer from it. He has been a great help, and believe me, when you have a condition that has no visible symptoms, and no signs other than things you feel, it's hard to find someone who takes you seriously. I mean, one doctor sent me to a shrink because he said I had mental issues. I was depressed. Well, if you went from active to feeling like hell, you'd be depressed, too! The hardest part for me has really been learning to slow down and pace myself. I still haven't quite mastered it, but I'm learning.