Geez, it's like we're at a support group.  

I've been visiting for awhile now and thought it was time to do the full intro with my long saga.  I've been sickly most of my life, but I finally fell apart completely about six years ago.  I'm now 42 and on disability, and continue to find answers to some things while new symptoms emerge.  It was when I started with the heat-and-friction-induced itching that I found you all and realized maybe a lot of my problems could be explained by a mast cell issue.

My current symptoms are:

• Fatigue, with additional difficulty recovering from exertion (hours to weeks)
• Dizziness/lightheadedness
• Headache (mainly between and behind eyes and eyebrows)
• Difficulty focusing (visually as well as concentration)
• Extreme sensitivity to sounds, light and smells, particularly fragrances and chemicals
• Aching in joints, mainly hands, but also at times hips, knees, toes, wrists, elbows, back
• Stressful situations considerably increase fatigue and often other symptoms
• Some difficulty sleeping, not feeling rested from sleep, falling asleep during day
• Temperature intolerance, both heat and cold (anything outside the range of about 70-78), completely unable to cool off or warm up
• Feet swell and become purple if sitting or standing still too long
• Times of impatience/moodiness
• Frequent stomach upset/cramping/bloating/gas after eating, worse later in day, CANNOT eat anything greasy, with tomato or vinegar
• Itching/prickling of hands/lower arms/lower legs/lower thighs/occasionally breasts when overheated or touched, especially in hot shower; can become unbearable
• Occasional bouts of vertigo
• Varying tenderness in armpits and sides of breasts occasionally so painful it hurts to move arms

Below is a brief (I know it doesn't seem like it) run down of my history with all this.  This is just the highlights and doesn't include a plethora of specialists and tests done to rule things out.

Preteen/teen – Recurrent headaches and facial pain, attributed to TMJ dysfunction

1989/90 – (Junior year of college) Suffered from severe fatigue, diagnosed hypothyroid with benign pituitary microadenoma, treated with five months of Synthroid then discontinued.  Some anti-thyroid antibodies detected?

1994/95 – (Grad school) Suffered from fatigue, depression, terrible joint and muscle pain, diagnosed with fibromyalgia.  Tried Amitriptyline with no improvement but discontinued after severe bout of vertigo.  Saw improvement with physical therapy, cognitive behavioral therapy and continued exercise.

2002 – Diagnosed with GERD.  Treated with PPIs and dietary changes.  Discontinued PPIs after one year.

2003/2004 – Progressively worsening fatigue, headaches, dizziness with bouts of vertigo, depression, “brain fog”, difficulty concentrating.  Tried numerous anti-depressants but none helped and none were tolerated well.  Participated in therapy with clinical social worker.  Diagnosed Hashimoto's Thyroiditis. Began Synthroid again.  Had to reduce work hours.  Noted Mitral Valve Regurgitation.

2005/2006 – Unable to continue working due to worsening symptoms.  Diagnosed with extremely low ferritin.  Treated with oral iron and then IV iron infusions.  Had D&C to remove uterine polyps,  a potential source of iron loss. Vertigo finally diagnosed as Benign Paroxysmal Positional Vertigo (BPPV).  Treated with Epley maneuver.  Also noted on examinations was low blood pressure and blood pooling in feet.  Reduced grip strength noted.

2007/2008 – Continued fatigue, headaches, dizziness, “brain fog” all with fluctuating severity.  Continued IV iron infusions.  Developed pain in joints, starting with and primarily in hands, with hips, feet, knees and back occasionally involved.  Modest to no swelling noted.  “Fibromyalgia-like” symptoms returned.  Began Plaquenil for joint pain, which was attributed to non-specific autoimmune process.  Started on continually evolving list of dietary supplements due to new doctor diagnosing:  ANS disorder, adrenal fatigue, amino acid deficiencies, Lyme, Babesiosis.  Increasingly debilitating dysmennorhea.  Heat and cold intolerance more notable.

2009/2010 – Some slow improvement in fatigue, headache and “brain fog”, though easily set back by overexertion, stress, or no apparent reason at all.  Started on Cymbalta for fibrolymagia symptoms.  Saw some improvement, but had side effects of grogginess and mild diarrhea.  Found amino acid and protein supplements to be especially beneficial.  Diagnosed with mild dry eyes.  Diagnosed with adenomyosis.  Had NovaSure endometrial ablation – eliminated debilitating dysmennorhea, somewhat stabilized ferritin.  Began having itchy/prickly feelings in legs and arms (with no rash) when overheated.  Noted increase in bloating/gas in the evenings.  Had basal cell carcinoma removed from left shin.

2011 – Discontinued Cymbalta after nearly two years of taking it at various doses.  Added turmeric and green tea extract for joint pain.  Recurrence of BPPV.  Itchy/prickly feelings markedly worse in/after shower – one episode took some twenty minutes to control even after covering legs with ice packs.  Stomach pains worsening with some lunch meals and most dinners causing cramping, bloating and gas.  Diagnosed Cholinergic Urticaria.  Combination of Zyrtec, Allegra and Xantac reduced but did not eliminate itching/prickly attacks and GI problems.  Dry eyes worsened considerably, requiring treatment with Restasis.

What I'm taking:

• Synthroid
• Plaquenil
• Restasis
• Zyrtec (only 5mg in pm as it makes me too sleepy)
• Xantac 1-2/day, trying to keep amount down so I don't become resistant - took 2wk break when it stopped working as well
• Allegra 180mg in am (tried a few others, this worked best)
• Licorice Root to keep my blood pressure up
• A whole slew of amino acids, minerals and other supplements

The new GP I found near my home in August is ultra-supportive and has contacted Dr. Castell's office multiple times but hasn't gotten any assistance AT ALL from them.  All she wants to know is what tests I should have done so that we can be more confident in the diagnosis (the fact that the antihistamines give me some relief certainly gives me some indication).  She's happy to refer me, but only if it is appropriate, and we just don't know what tests to do to figure that out.  We've ruled out just about everything, and I had a Tryptase of 5.66 (normal range 1-11.5), which doesn't surprise me as I wasn't reacting at the time.  Please, could you all tell me what the other tests are and what they're testing for?  I've seen mention of them here and there in your posts, but no comprehensive list.

THANKS SO MUCH FOR ALL OF YOUR ASSISTANCE!  THIS FORUM HAS BEEN A HUGE HELP!!!!

HI Kat,

I'm new here too but all of your symptoms match what I have going on and I'm diagnosed with Chronic Urticaria (positive ANA makes it autoimmune), Mitral Valve Prolapse, GERD.

2 things I noticed that might be giving you trouble are licorice and tumeric.  I think they are high histimine foods and mast cell "people" have to stay away from these foods.  There's a Chronic Urticaria web page that lists foods to avoid.  Also you have to watch everything you ingest and put on your body.  Shampoo, soap, hand creams can all affect how you feel.  I'm just speaking from my own experience.  I have the fatigue part bad.  

I take 10mg. singulair at night (for about 1 1/2 weeks now), Flovent inhaler (for about 1 1/2 weeks) and ranitidine for 2 days.  Today is the 1st day I've felt well in a long long time.  Everyone kept saying that they felt better when they were on the right medicine and if I feel better from the above, it's a miracle.  The people here steered me in the right direction.  2 different docs had prescribed the meds but in hindsight I was cross reacting to so much stuff like taking muscle relaxant and ranitidine.  I thought the ranitidine made me sick but it was the muscle relaxant.  So you basically have to eliminate everything from diet/life and rebuild one by one with low histamine foods.  I also stay away from salycilate, sufites, msg, sweeteners, gelatin.  I'm still learning.

Hi Kat,

I am sorry to hear of all of your health problems. It would seem you have been battling with one thing or another most of your life!  And you are exactly correct, this is a support group!!  It is a very well informed and caring group of people!

As Joan mentioned, Dr. Afrin (of the Medical University of South Carolina) is also a mast cell doctor.  If you would like more information (email address, phone no.) and you are not able to find it on this site, please just PM me and I will send it to you.  If you have other questions about Dr. Afrin, please feel free to ask.  He is the specialist I see and he works with my local doctor to treat me.  There are several others on this site that also see Dr. Afrin.  I know they would be happy to answer any questions you might have as well.

Welcome!  Take care and keep us posted!  Lynda