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4686261 tn?1358135192

New and need advice (Long - sorry!)

I have been recently, finally, referred to a rheumatologist after finding a GP who took my symptoms seriously.  But it is still 6 weeks til I have my appt.  In the meantime, I have decided to stop suffering in silence and seek help & advice.  Here's my history:
42 (almost 43) yr old female, very overweight.
Many bouts with illness growing up, mostly strep infections.  When I was in 6th grade, I had the gamut of strep infections almost nonstop the entire school year: strep throat from Sept - Dec.  "Well" for 2ish weeks, before coming down with strep pneumonia on New Year's Eve.  Sick with that for 2 weeks.  "Well" for about 3 weeks before another strep throat infection popped up.  After 3 weeks, Dx with scarlet fever.  Then shortly after, with rheumatic fever.  After all that went away (ish), in May I was tested for some sort of vascular infection that the dr said was also caused by strep.
Had mono when I was 15.  Sick with that for about 3 months.  
Always had severe "growing pains" when younger, later called "shin splints" when I was running track.  
Developed asthma in college.
Also Dx'd with polycystic ovarian syndrome while in college.  Always had abnormal menstrual cycles...until I apparently hit menopause 3 years ago.  I had 3 healthy kids, but also 3 miscarriages.
Migraines began in high school.  In addition to the typical migraines with pain, I sometimes have "Alice in Wonderland" migraines -- where my perception shifts and I feel I have shrunken or grown larger than my car.  These have lessened since I stopped having menstrual cycles.
Many respiratory infections -- pneumonia a couple of times, bronchitis almost annually.  MANY sinus infections.
Severe pre-eclampsia with my first child.
After my first child was born, I began having problems with dizziness.  One dr thought it was caused by small calcium crystals in my ears.  Meds didn't help for that.  Another dr thought it was another type of migraine, but migraine meds didn't help either.  
Postpartum depression with 2nd and 3rd children.  Severe with 2nd; began anti-depressants a month before #3 was born to try to stem it.  
Hip pain began after my 3rd child was born, in 2002.  Fatigue, stiffness in joints, sore hands, back aches also began.
By 2003, more random pains and cramps.  Plantar fasciitis in 2004, until 2007.  Illnesses continuing and interfering with work, to the point that I kept running out of leave at work and taking unpaid time.  2007 my joint pain was worsening, as was the fatigue.  
In the past 4 years, the achiness, pain, fatigue, muscle spasms/cramps increased.  Illnesses and migraines continue as well.  In the past year, muscle spasms/cramps have worsened to the point that they will start in my toes, or in a hip, and travel the entire length of my leg.  Only heating pad/hot water bottle will ease them.  Wrist pain makes it hard to use a computer much of the time (its the BACKS of my wrists, not where carpal tunnel would be a problem).  Sore ankles, feel like they are sprained.  
Hypersensitivity to touch, I almost forgot.  I remember it only being a problem after having kids, but my husband says it was a problem as far back as when we were dating 19 years ago.  Even the lightest touch sometimes hurts, and little pokes can be felt sometimes as much as 30 minutes after the fact.
Also inability to concentrate and think.  Very frustrating, as I used to love solving logic puzzles, crossword puzzles, etc. and now I can't think long enough to do them.  This makes being a teacher very difficult, as well.  I now keep lists to keep track of everything.  
Local anesthetics don't work on me more than about 10 minutes before they wear off, and then only at the max dose.  Had a C section with #3, and they almost had to use general b/c the epidural wasn't taking until they did max dose there, too.  Then it wore off by the time they were finishing up stitching me when done.  Dental work is a nightmare!  I have to be under sedation, and even then I am told I react as if I am in pain.  And it takes me a long time to come out of sedation.
3 years ago, my GP finally ran some tests on me to figure out what was going on even though he said he thought I was just depressed.  Those lab results came back with super-low vitamin D, normal B-12, lowish cholesterol (under 120), positive for Epstein-Barr virus and positive ANA with speckle pattern.  He put me on vit D supplements but didn't say anything about coming back to have levels checked, and didnt' say anything about the postive ANA or EBV.  
This week, I had a somewhat new occurrence...my muscle weakness spread through both legs.  Tuesday it was all I could do to focus on keeping my legs under me and walking while at school.  Wednesday morning, I couldn't even get out of bed onto my legs because of severe cramps and muscle weakness.  I went to my dr's office, and had to see another dr in the practice.  She ran a battery of tests -- reactive to many tender points, electrolytes all normal, no anemia, B-12 fine, thyroid fine, vit D again low (8 instead of being 30-60), and positive ANA with speckle pattern (1:80).  This dr immediately set up the referral to the rheumatologist, and put me on Lyrica as well as 5000IU Vit. D.

Comments?  Advice?  Thoughts?

Lisa
3 Responses
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1530171 tn?1448129593
Hey birthwarrior, don't give up on the idea, b/c you can't afford an ND.
You can do your own research, take online courses, and apply your acquired knowledge wherever applicable.
I have taken certification courses online over the years at a substantially lower costs, compared to "bricks and mortar" college tuition costs.
Anyway, I'm glad you replied, as you are the only one member out of 20, who responded to my reply to  the original post, last couple days.
It just happens, I guess.
You are welcome to pm anytime you have a difficult medical question.
Take care and best of luck with the Rheumie.
I hope you get a good one, who listens. lol!
Cheers!
Niko


Helpful - 0
4686261 tn?1358135192
Hi!  Thanks for your reply!  Yes, I agree with everything you said.  I wish I could afford to pay a ND.  Right now, the new dr I saw has me on 50000IU Vit D3 weekly for 4 weeks then wants to check my levels.  (She initially had me on 5000/day then called 3 days later to increase it.) She said we would switch to oral if this round doesn't make a dent, then once it is up she wants me to stay on 5000 a day to maintain...she stressed not stopping it whether I feel better or not b/c my body apparently doesn't make Vit D well, if at all.  (Ever since my 1st child and ped explained sunlight needed for Vit D, I have made sure to get sunlight every day for about 30 minutes.). She also said that she thinks my cholesterol may be low -- good HDL/LDL ratio but total is near 100.
I grew up an Air Force brat & military medicine back then was not set up for dependents.  They had a rule that to remove tonsils, a patient had to have 6 infections in a year.  Since I rarely had a negative test, my illnesses were counted as essentially 2 strep infections! My pediatrician was contracted to Air Force & he told my parents to take me to a civilian dr to have to tonsils removed but they couldn't afford it.  Air Force finally took them when I was 18 and they abscessed.  My poor dr threw every antibiotic at it he could, and in mega doses.  I've often wondered if that alone didn't mess me up.
Anyway, I guess I will see what this rheumy says, and do a lot more research on my own.  Right now, I am so "ill" that working feels like the death of me.  That makes me sad, as I love teaching.
Helpful - 0
1530171 tn?1448129593
Hi birthwarrior and welcome to the forum.

Your early multiple infectious conditions, from strep to scarlet fever to rheumatic fever to mono to vascular infection have predisposed you greatly to various disease states.
Your body was never given a chance  and necessary support to repair and re-balance.
Chronically activated JNK gene, ensured the perpetuation of disease.
Your body's "terrain" became the ideal pathogens habitat, with the perfect
conditions, like lowered immunity and low PH (acidic), for unchallenged  growth.
The medical system at this point because of the way its structured,
is not able to help you much in my opinion.
In suspect it may have  failed you from the beginning, when a strep infection was "allowed" to escalate to scarlet fever and then rheumatic fever and vascular infection. This was usually something that happened in third world and developing countries, not in our society, as antibiotics were available following  a rather simple diagnosis, to treat the original infection.

Your vitamin D3 deficiency MUST be corrected!!! (being overweight predisposes you to being vitamin D deficient chronically)

Symptoms of Vitamin D deficiency:

Fatigue
General muscle pain and weakness
Muscle cramps
Joint pain
Chronic pain
Weight gain
High blood pressure
Restless sleep
Poor concentration
Headaches
Bladder problems
Constipation or diarrhea

Diseases linked to vitamin D deficiency

Osteoporosis and Osteopenia
17 varieties of Cancer (including breast, prostate and colon)
Heart disease
High blood pressure
Obesity
Metabolic Syndrome and Diabetes
Autoimmune diseases
Multiple sclerosis
Rheumatoid arthritis
Osteoarthritis
Bursitis
Gout
Infertility and PMS
Parkinson’s Disease
Depression and Seasonal Affective Disorder
Alzheimer’s Disease
Chronic fatigue syndrome
Fibromyalgia
Chronic Pain
Periodontal disease
Psoriasis

You may have to take sublingual liquid emulsified D3, for better absorption.

If you can afford, walk away from the conventional medical system.
Keep them only for emergencies and certain tests.
See a naturopathic doctor, the best one you can afford.
You have been tossed around the system long enough,
with symptom reducing meds and very little regard for your overall health, from specialist to specialist, and from test to test.

I'm sorry to be so direct, but I do feel for you. This is a medical injustice.
There's no doctor that can say, that they did their best they could in your case, to really help you regain your health.
Please consider my suggestion and take time to find an ND who can help you make the transition form allopathic medicine to holistic and natural.
You body can only be treated as a whole, respecting the inter-connectedness  and inter-dependence of all its organs and its systems.

I really wish you well. You have suffered enough in your life and you certainly deserve better health and consequently a better life.
Niko
Helpful - 0
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