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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 11:37 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.
 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/26/2008 1:50 PM (GMT -7)   
Hi KE,
 
I think you need to take your Fibromyalgia diagnosis seriously.  From your list of symptoms, negative blood work, CT Scans, etc, It sounds truly like Fibromyalgia.  If you had lupus, your joints would be swollen and red from inflammation.  You don't have that happening.  Your joints hurt like they're inflammed but inflammation isn't present.  That's Fibromyalgia.  Pain in the tendons, ligaments and muscles surrounding the joints.  ALL of your symptoms are classic Fibromyalgia.  All of them.  You have weather sensitivity which is huge in Fibromyalgia as well. 
 
I think you're going to drive yourself crazy over analyzing all this.  I hope I'm not coming across as mean.  Tone in our posts is hard to express!  I'm just concerned that you're thinking way too much about what else this might be.  When do you get your Lyme tests back?
 
We do understand what you're going through. Fibromyalgia can mimick so many other diseases, but the great thing about Fibro is that when the blood is tested everything looks just fine.  So do EMGs, CT scans, MRIs, bone scans, etc.  It all looks totally normal. That is one condition that doctors take very seriously.  If you had something autoimmune going on, or Lyme Disease, your blood work and other tests would not be normal.
 
Let's see how your Lyme tests come back and go from there. I would feel awful if you sent yourself into a depression or anxious state when you didn't need to.  Try not to over analyze.  I know it's hard, but think of your mental health too.
 
lots of love and support,
Ginny
 
I just noticed your ANA is at 1:60?  In your other post you said it was 1:640.  If it's 1:60, it's very borderline.... Hardly there.
 
 
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 2:06 PM (GMT -7)   
Thanks Ginny: You are correct it is 1:64..sorry for misquote. I will try to relax. I really appreciate you taking the time to reply. I will keep you posted on my blood work..should come back early next week.

((hugs))

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/26/2008 3:33 PM (GMT -7)   
You're welcome KE. I care about your well-being.  ((((hugs)))) for you too!  I hope you don't have to wait long for those Lyme tests.  Have a nice warm bath with some scented bubbles and treat yourself to some relaxing music and some chocolates!!  Pamper yourself today, tomorrow, the weekend.  Be good to you. smilewinkgrin
Talk soon!
Ginny
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


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 11/26/2008 11:21 PM (GMT -7)   
Hi KE,

I tend to agree with the other ladies, it does sound a lot like Fibro, weather changes play a big part in that. As far as Lupus goes I've never heard of anyone being energized by the sun, actually in most cases it's quite the opposite. For most of us the sun totally zaps our energy. Fibro can make you feel totally horrible, for many years my lupus went into remission, but unfortunately, my fibro did not, so I can truly relate to the symptoms you list above and the worst part is for many years doctors did not take fibro patients seriously. I think that doctors are slowly coming around and truly believing that it is a true syndrome and that we are not all crazy, we truly do have these feelings and need real treatment in order to cope day to day. I know weather changes, especially from one season to another or if I travel from one elevation to another I am hit hard with a flare.

Hang in there and do as much research as you can. Listen to your doctors and keep a journal of your symptoms. This will help you a lot.

Best of luck to you in your journey for a proper diagnoses.
Happy Thanksgiving
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 11/28/2008 8:31 AM (GMT -7)   

I was going to say too that summer time is not my good parts of the year.  Not that the pain or weakness is gone away at any time during the year, but summer time is harder due to the sun for me.  and if there is many other things happening to you, it would be easy to self diagnose so that we would at least have an answer of some sort.

Others here are better at responding to you than I would be.

Hope your day is good to you

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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