I don't understand and My mom doesn't get it... tired of the questioning!!

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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 11:35 AM (GMT -7)   
Hello:
 
I have posted on the lupus, Fibro, lyme and MS sites..because I'm lost.
 
I have had issues with my muscles and joints and all the weird things in between since 1998.
 
I was convinced that I had MS for years, and after seeing several neruorolgist I and being told that it was fibro, I accepted the dx.  My symptoms are:
 
Muscle pain (achey) pins and needles sometime , weakness (in L.leg at times), twitches (even my lips), tremors, shakey muscles (when walking).  One day my gums was hurting (it felt like my teeth-sharp pains) for about an 30 mins.
 
My insides trembled one night (weird)
 
Joint paint and popping (no swelling)
 
Tongue, eye, ear, nose, head and facial pain (aching and burning)
 
Dizziness: balance coordination and unsteadiness
 
Forgetful and short memory lost (and then I say oh yeah I remember)
 
Gerd- which was causing sleep apnea
 
Weak swallowing muscles (no choking) and soreness inside of throat/espohagus when I have flare... had barium swallow test and upper scope.. (basically normal).  ENT say spasms from refulx (??)
 
 
 
Recently: I noticed my hair thinning- I'm not sure whats going on..I'm not sure if its because I was trying to be a kitchen beautian:+0.. I permed it about a month ago.. was not coming out then (not that I noticed).  It does appear to be over processed looking..  but it most bald in the back of head (boo hoo).
 
TEST: MRI 3X, CAt scans (back too) , emg 1x, evoke poteintal (once),
Many blood test:  ANA 1:60, sed rate 7, dsDNA (?)-negative. General blood test were with in normal range.
 
Was in the hospital 2 weeks ago for 3 days, for dizziness etc..saw rheumy, neuro, ent and PCP.  No dx, everything was okay..except the ANA.. Rheumy doubts if its lupus (say I don't fit the criterias) , neuro say take Cymbalta. Was released with rx for mortrin and vicotin. 
 
My PCP took blood yesterday to test for lyme and b12 etc. and other stuff not sure what. Sceduled for EMG on the 18th..(starting all over).  over, and over and over....
 
I only feel bad when/right before it rains/snows or the humidity is high.  The summer is my best time and when I was pregnant.  I felt great. Working in the yard and jogging etc.  It like the sun re-energize me.  I have been going thru a flare now for almost a month!!! Was off work for 3 weeks, went back for 2 day and took off today before the holiday.  My eyes hurt so bad.  I had them tested before..(fine).  Its like I'm inflammed..but not showing on tests.
 
My spirits are getting really low..waiting and constantly going to doctors and ER only to be sent right back home.    I had one doctor look at me and said WOW when I explained everything (I got a new doctor!!).  I have flares before over 10 years..but it like this time is worst.  My mom looks at me like I'm crazy and says I neve heard of someone going thru what you are going thru.. you need to get back to work it may take your mind off things.
 
Nobody understands- nobody..except for members on this site!! 
 
Can anyone help me make sense of whats happeining to me?  I feel like members here sometimes give better insight than doctors.  I'm not depressed yet. but I'm worried and anxious...trying to fight becoming depressed.
 
 
 
 
 
 
 
 
 
 

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/26/2008 11:56 AM (GMT -7)   
Hi, KE08, and welcome!  Sure sounds like fibromyalgia to me.  I have nearly all of those problems and have had them off and on for 21 years.  The barometric pressure changes and cold weather can make the pain worse.  You also can have flares that make the pain worse.
 
Have you read the Fibro 101 thread...the second thread on the forum?  There are links in there all about fibro.  There is a list of symptoms.  Print them out and show your Mom.  Also the link called Doctors Respond to New York Times Article is another good one to print out.  It describes what people with fibro go through and that you are not crazy and also that it is not all in your head. 
 
You have a diagnosis.  It sounds like you have had all of the tests to rule out lupus, MS, etc.  Lyme blood work is usually sent to a special lab in California for the most accurate readings.  From what I have heard on the Lyme board, the regular labs we use don't have the specialized equipment the lab in California has.  I know someone on the Lyme forum could help you with that. 
 
But, in any case, it looks like you have fibromyalgia and now you need to accept that.  Things could be a whole lot worse!  You can live a full and enjoyable life with fibro and it doesn't damage your joints or kill you.  You will have pain and fatigue but you can learn to control it.  That's why we are here.  To help you!  Ask questions and someone will have some answers for you.
 
I'm so glad you joined us and I hope to hear more from you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 12:09 PM (GMT -7)   
Thank you Sherrie, I guess it just hard to except..Fibro being this painful..my eyes hurt like crazy, scared I will go blind..but it clears up. Dizziness is crazy too. If you say you experience most of this..then I feel a lil better. I feel I'm going to lose my job one day..because I miss soooo much work. Co-workers just welcome back Nikki (use to see me off). I'm a single mother and everything depends on me! Maybe it's nerve damage or something too. I think all of this started when I took Accutane years ago..only took 2 pills..it may have damaged something (all doctors say- nope doubt it).

What meds to you take to get you feeling better. I think a month is long enough to suffer with a flare.. Mortin helps me somewhat. I don't understand why they say take mortin if FIBRO is not inflammatory disease?? Was on predisone for a week .. I felt no improvement... I don't get it Sherrie!!! I didn't not have one sysmptom when I was pregnant five years ago..9 months of pain free..unitl delivery-LOL..

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 11/26/2008 7:40 PM (GMT 0)   
If it's fibro, and you do have that dx confirmed by a doctor then you have absolutely nothing to worry about. As JoKat says, "Fibro is a life sentence, but not a death sentence."

Motrin isn't just an anti-inflammatory. It's also an analgesic (pain killer) so that's why you take it. If you can't afford the prescription you can buy ibuprophen at the grocery or dollar store. 800mg (usually 4 tabs) is the prescription strength and it must be taken with food to prevent stomach problems.

With fibro you're gonna be uncomfortable, maybe for the rest of your life. You're gonna need to do stretching exercises and use heating pads and muscle rub creams. You're gonna have good days and bad days and you will keep going because you are going to be strong. Also, you can ask your doctor for an SSRI (prozac, zoloft, wellbutrin, etc.) to get your serotonin levels back up. This will help your pain perception, sleep patterns and mood. If you are feeling bad since the darker days of fall have arrived you may have S.A.D., Seasonal Affected Disorder, which is common in people of northern European ancestry. The treatment for this is walks in the sunlight and time spent in front of a broad spectrum light specifically made for this disorder. You can read more about S.A.D. here:

Information about S.A.D. on Healingwell

There is a lot of information that explains it and explains the helpful things to do about it. Hope this helps.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

Post Edited (Jeannie143) : 11/26/2008 12:44:36 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/26/2008 12:45 PM (GMT -7)   
Prednisone is not a great drug to be on for long term.  It can cause a lot of problems on it's own.  I take ibuprofen (with food to help protect my stomach) and Tylenol for pain.  I have the same questions as you do.  I think they will find it IS inflammatory some day.  The ibuprofen helps me the most and I take 600 mg four times a day...every six hours around the clock...when I'm the worst.  There are times I can take less.  When I'm really bad I will take 1,000 mg of tylenol between the ibuprofen doses.  You can safely take 2,400 mg of ibuprofen a day and 4,000 mg of Tylenol a day.
 
I also take the malic acid/magnesium supplements and they have helped me quite a bit with pain and fatigue.  There is a link in the Fibro 101 thread all about them.  Read it and see what you think.
 
Many members have gotten relief when pregnant.  The hormones must help somehow.  I'm not a doctor so I can't tell you anymore.
 
If you are having some vision problems, you might what your doctor to check the thyroid gland.  Many with fibro have hypothyroidism and you can have double vision with that or even trouble moving your eyes.  A simple pill can help if that is what is going on, I think.
 
I had a flare last for four months this past year.  It was not fun but there are no set rules with fibromyalgia.  You just have to accept the fact that you have this and then work around it.  Things could be a whole lot worse!  I have had a full and enjoyable life with fibro and so can you!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 12:48 PM (GMT -7)   
Thanks Jeannie! I remember I went to a neurologist (heard he was one of the good ones).. after several test (10 years ago) ...He told me that he didn't know what it was...but he knew what it wasn't: MS ETC...,and for me to get it over it!! It not going to kill you!! learn how to cope with it! He didn't believe in Fibro..

GUESS WHAT??? He now the keynote speaker at Fibro seminars!! Oh...Jeannie dont' think its S.A.D. but thanks for that possibilty.. all info helps!!

((hugs)) to all!!

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40603
   Posted 11/26/2008 1:44 PM (GMT -7)   
Another thing that might help you is vitamin D. You say that you feel good in the summer. Well, you get a lot more sun then. Most people with fibromyalgia are very low in vite D. I take 2000 iu each day. I also do the malic acid/magnesium supplement and it has really helped me.

I hope that you feel better soon.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/26/2008 1:56 PM (GMT -7)   
Prednisone is the worst med to be on for fibromyalgia.  I know because I have to take it for my lupus.  Because Fibro isn't inflammatory, adding synthetic cortisol to the system creates an overload and actually makes fibro pain much worse.  So DON'T take prednisone unless you have specific inflammation to tackle. 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 5:10 PM (GMT -7)   
Thanks Ginny..actually I took the prednisone for a week (ER doc gave it to me).. I didn't feel better so asked could stop. My doctor offered me Penquil(sp?) the other day. I told her no.. I would stick out the flare, until lupus and lyme test come back..

Thanks:+)

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/26/2008 6:07 PM (GMT -7)   
Hi KE,  that's good you're not taking anything right now.  You don't want to mask what might be going on in your body.  These meds will do that, especially the prednisone because it works so quickly.  Plaquenil takes up to 3 months to build up in the body.  It's a very powerful drug that shouldn't be taken (or prescribed) unless there's a clear reason for it!  I'm surprised your doctor offered you that..... Hmmmm. (disconcerting).
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 7:26 PM (GMT -7)   
Ginny:
 
I think she offered it because she saw the look of frustration and desperation on my face.  She is my PCP and she told me that my ANA is significantly (1:64) high and to call the rheumy and tell her that she feel something is going on with me.
 
I called the rheumy and she said is not that high.. and most doctors do not how to interpet the tests.  And that she will see me on my next visit.
 
 
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