Warm greetings to all,
This is my first time joining/posting but I have been referencing this site on & off for serveral years. Apologies in advance if this is posted in the wrong area - I used the multiforum option as I feel like many/all of my issue are related in some shape way or form (I will attempt to update if need be).
I will try to keep this as short as possible however please bare with me as this has been a multi year journy. Thank you in advance to any & all who read.
-Basic Personal Info-
Age: 25 (26 in Aug)
Sex: F
Race: Caucasion (more specficially I believe Irish & English)
Loc: Greater Seattle area (born & raised)
Occupation: Admin/Office Manager (med-high stress)
-Current Symptoms (attempt to add frequency as well)-
- Extreme fatigue day & night regardless of sleep schedule (sleep almost feels usless)
- At its mildest point I just feel like I only slept 3-4 hours & have a light ache but these days are rare
- At its heaviest point it almost feels like I passed out drunk on a cement floor & didn't sleep due to loud noises/distractions (a frusterating like feeling?) & accompanied by a much deeper fatigue, eyes burning deep ache & shallower than normal breathing (feels like I am on my last breath)
- Feels like this is getting worse/I am getting weaker
- Can barley make it through a work day even if it is a slow/low stress day & sometimes I find myself just waiting for bed time on the weekends
- Naps either do not help, give me a headache or make feel slightly drunk/spacey & fuzzy so I tend to avoid them unless during a migraine
- Say I go out to see friends or on a light trail walk on a Sunday, I will be so tired I would feel like I have to call in on Monday (this isn't an option of course)
- Poor/no Stamina
- Used to be able to / had to walk 5-6 miles per day however body feels much weaker I can barley handle a 20 min walk around my office building complex. If I do go on extended walks/hikes I end up feeling weaker & weaker to the point I have had to lay down in the middle of trails or site down on sidewalks.
- Muscle & joint aches (no swelling!)
- Major joints such as hips & kness are the worst for pain however lower back sk/si(?) joints, shoulders, ankles, wrists & neck joint all also have deep aches, several popping, catching & grinding
- Muscle ache/fatigue is constant. Just sitting, laying, or standing is uncomfortable/painful. There is never really a "good" posisition it is just some are better than others
- Ache can be light almost like 4 or 5 days after an intense workout or intense like 1 day after an intense workout or sleeping on a concrete floor (Especially upon waking, it feels like my bones sank through me and my muscles have become hardended stone)
- Cold joints
- Mainly hips, knees, ankles, hands, feet & wrists w/some cold sensations across back/shoulder blades (usually both sides are equally effected, rare for it to be one or the other). This is frequent & deep like there is ice inside of my bone marrow & it is radiating outward. My skin will actually be cold to the touch & it feels like it spreads for example when my hips are cold the ice feeling comes from the socket and then feels like it is "pooling" out into thigh & upper butt/lower back. As I write this my hips, kness & ankles are all ice, if you could see cold waves I feel like you'd see them waving off of me yet my head is normal for me.
- I have my boyfriend rub / massage my joints supper fast to warm them & this sensatin only lasts a few seconds & is normally painful even w/light touch
- I will take ultra hot baths (sometimes showers) to try and warm up, it seems like the heat only reaches the surface of the skin, never deep inside where the cold seems to come from
- This can even be lightly painful because it is so cold, almost like light frostbite (I keep wanting to say freezerburn!) sensation?
- Numbness & tingling
- Occures sometimes from neck through back of arms into outter pinky/ring finder of hands. Will be cold, numb & or tingling
- Tingling spider never sensations across back
- Issues w/lower extremities falling asleep when they doesn't seem like they should ( I feel like I always have to pay extra attention to how I sit/stand/lay)
- Cold spells (slightly less only because we have hit summer/had some muggy days which I am really sensitive to)
- So cold my whole body will shake/tremble though not necessarily the same feeling as the bone marrow but this is a deep cold from the core of my body. Can happen w/or w/out joint coldness precending. Sometimes this can be so bad I can hardly move, usually I am parked directly in front of a little space heater, any variation in temperature makes it worse sometimes it will even be hard to breath due to the shaking/shivering. I also feel like this is getting worse, this past winter was hell on me & my electric bill was $300+ a few times because of the constant heater/bath (Can't afford that AT ALL so I do also wear layes such as leggings then thermal sweats, fleece slippers, wool socks, down vest/jacket inside the house, sometimes I sleep with the down vest as well however none of this offers the relief of the bath which again is miniscule & very temporary but when the spells are bad & frequent I find it's my only answer)
- Constant headaches & frequent migraines
- Headache almost daily in varrying degrees, usually around brain stem area or across front of head (best way I can describe is breathing in through nose too fast on a icy cold day, almost like a brain freeze but not quite)
- Migraines are about once - twice a month ranging from just having to lay down to needing mecidine to force me to sleep it off. Pain killers do nothing - most recent one was a 2 week headache that manifested into a migraine at the end that lasted 2 days and tapered back off into a headache. Caused me to throw up in the car it was so bad once the migraine manifested
- Constant flu/sick feeling
- Slightly scratchy throat, weak all over, nausea, queasy, low appetite, slightly sniffly nose, head fog, tender/slightly swollen lymph nodes on & off, chronic cough (varys in degrees but usually w/me several times throughout the day, feels like itchy lungs/bronchial)
- IBS Symptoms (diarrhea, bloating, abdomnial pain, food issues)
- Almost all the time - I try to do restrictive eating espcially given the food allergies but this is way easier said then done in my current situation (am still & will still continue to work on this)
- Random deep ear pains/itching
- Only have had 1 ear infection in my life I can actually remember which was a few years back, sometimes the pains will be very similar to that - the fullness, pain like your ear needs to pop however it is very sporadic while the infection I remember being constant
- Chest pains/weakness
- Trouble breathing deep, sometimes deep breathes hurt from spine into chest/sternum & vice versa, more of a deep bone feeling that muscle/organ
- TMJ - Jaw clicking, popping, opening uneven, catching, painful if eating overly chewy foods, light muscle swelling on occasion
- Cogenetive issues
- Have to repeatedly ask for instruction, can't remember tasks at hand
- constantly distracted almost all ADHD symptoms
- Constantly forgetting items such as keys/phone & losing items such as receipts & paperwork
- Difficulty holding long conversations due to attention span/brain fog
- The harder I try to focus the thicker the fog seems to be to the point I have to leave the conversation/situation (can be awkward at work when receiving direction from management & I can't seem to be on the same page or form a sentance w/out stuttering & trying to find words)
- Constantly have to re-read things, no retention of informatoin either read or spoke
- Mood swings
- Anxiety/Constant panic attacks - This is getting worse & can be set off but an emotional stimul
- Crying spells - this is getting worse & may relate to depression (below) but finding it hard to deal with any emotional situation , anything that would normally get someone mad I notice I skip over anger & go straight to crying. Sometimes I just feel overwhelemed & break down even if I don't want to (this can be annoying especially at work)
- Depression - I can't tell if this is situational or health related (as in hormones, or maybe infection) but I feel like it is getting worse.
- Alcohol intolernece - Any type of drink causes stomach upsets & body aches
- Irregular heatbeat, heart palpitations, racing heart (sometimes it will race & do a large "thunk" to the point I have to grab my desk/chair). Can't seem to find a cause of this it's pretty inconsistent unless I am feeling extra exhausted
- Dizziness/vertigo - sometimes it feels like the room is spinning even while sitting, falling to ground while walking due to dizziness. Can be walking normal then all the sudden all I see is white & I am on the floor but I am never passed out like I would expect from a true faint
- Sensitivity to light, noises & smells
- Over brightness almost always causes headache & migraines though I wouldn't say light is the only / required cause of my migraines
- Tinninitus - Usually one ear will ring very high pitched & loud while the second ear will cut out all sounds, causes great unbalance
- Slow wound healing
- Hyopglycemic type feelings
- Feels like blood sugar drops that are accompanied by shakes,weakness, queasy, headache, heart palpatations, cold sweats. These have become more infrequent but I also have quicker access to snacks at my current job when I feel this coming on.
- Oral surgery to remove 4 impacted wisdom teeth & 1 cramped tooth. Fairly sure my mandibular nerve was nicked in the process as well made my TMJ worse. Nerve issue goes from right front tip of tongue down to back of right front bottom teeth through throat into back of head & right eye (not from face directly to eye, as odd as it sounds I can feel it following the path described). Not always a pain but often times a werid sensation that NEVER leaves. I only add this in because of the "fibro" diagnosis I feel like possible nerve system issues could be making this sensation worse or "flare" more. This also made me VERY sick, I was put in under IV & was told to fast before hand. I was perscribed percacet (sp?) & penecillin afterwards. Due to how sick I felt I only took one penecillin (only took that one out of infection fear due to the amount of blood & how deep the wounds were), the percacet did nothing for either mouth pain or the normal pains I have througout the day so I only took about 3 of these.
-Current Diagnosis-
- Fibromyalgia March 2016
- Symptoms as far back as at least 12 yo
- Food allergies in varrying degrees - Feb 2017
- 19 items total, biggest allergies: casein, cheddar cheese, cottage cheese, cow's milk, goat's milk (medium), mozzarella cheese, whey, egg white & yolk, gliadin, gluten (medium), wheat (medium), almond (medium), peanut (medium), avacado (medium), pineapple (medium) , garlic (medium), green bean (medium), kidney bean (medium), lima bean (medium), candida albicans
- Scoliosis/ Multiple back issues March 2017
- Straightening of the cervical lordosis. Cornoal low resolution scout views show a mid to lower cervical dextroconvex curve & an upper thoacic levoconvex curve.
- Multiple "mild circumferential buldge", "mild facet degenerative change", C6 facet ankylosis, T7-8 disc narrowing & desiccation, Schmorls node formation, anterior mild spondylosis
- Issues w/SI/SJ joints (don't currenlty have those MRI results on hand)
- GERD Spring 2007
- Anxiety Spring 2007
-Odd Past Issues-
- Spring about 4 years ago I devolped a bad case of hives. They appeared to be under the skin on the palms of hands & soles of feet yet the ones on top of hands, arms, legs, back, chest ETC (except face) were slightly raisied. The slightly raised hives would start out as dots then over time fuse into one large patch of slightly raised red skin , for example 20+ hives on my back would turn into 1 giant hive. I had multiple tests done (couldn't tell you for what, the doctor at this point was very UNHELPFUL) that returned "normal" & was then told I had to find the issue out on my own. Could not determine an exact enviromental cause or food cause as I hadn't changed anything. I do know that at this point in my life the house I was renting I am sure had mold issues both underneath & in the roof & my place of employment had noticible water stains on the ceiling tiles, constant water leaks & dealing w/client orders (rug/clothing drop offs) were frequently musty mildowy & moldy. The hives lasted for about 9 months & each spell was sevearl hours long sometimes lasting throughout the night.
- About 4-5 years ago first issue w/toe nail fungus. Was constantly wearing socks due to cold issues however I don't believe my feet are particularly sweaty & I did not develop any other feet issues such as athletes foot. This lasted for over a year and seemed to slowly clear up. (This was in the suspected mold house)
- About 4-5 years ago issues first issue with yeast infection. Did not have insurance at the time so used OTC monostat or something along those lines. I believe I may have had "almost" occurances since then but have somehow managed w/ACV baths etc
- About 4-5 years ago first notable UTI/Kidney infection. Also did not have insurance at this time but I got sicker w/in days & could feel kidney inflamation through my skin so I went to the "low income" clinic. They did a urine test & said it "might be a UTI", gave me antibiotics for a week. When I had my follow up I was still feeling very sick & having pain (couldn't sit, stand or lay without kidneys and bladder wanting to pop, peeing was FIRE while getting punched in kidneys), they told me that I didn't need any more antibiotics & there shouldn't be anything wrong. After some googling & much crandberry juice (all natural unsweetened), I ordered some chinese medicine "eight herbs extract" that seemed to help within a week or so. To this day my right kidney feels weaker & will throb if I don't get enough water. Have always had frequent urination.
-Suspcions-
- Systemic candida/Toxic mold reaction
- I have gone back & forth in my mind about this for a few years & would like to from hear others who have confirmed they had this
- Food allergy tested scored "AVOID" on candida albicans, minor allergies to brewers yeast
- Brain fog & drunk feeling are almost too surreal at times for this not to be part of the issue
- Exposure to mold infested apartment complex for at least 10 years. Lived in multiple units that may have not direct mold however many units did have full blown black mold issues, there were constant roof leaks & roofing issues. Exposure to probable mold infested house for 4.5 years w/poor ventilation
- Exposure to mold work enviroment both building & client orders for 3.5 years
- Leaky Gut
- I have had chronic stomach/digestive issues since I was a child. Often times even "safe" foods seem to make me sick.
- Bubbling/gurgling gut almost instantly after eating
- Many food allergies I don't believe I have always had aside from a few majors such as milk (actually had a test done at the begining of 2016 that came back with "no allergies" however I don't trust the facility that did it as they were very disorganized & visually messy)
- Constant inflamed intestines
- Gall bladded inflamation
- pain 2-3 inches on either right or left of belly button. Duodenum area pain
- Heavy metal toxicity
- Had this tested & only Arsnic came back at a "normal" range of 12 (I believe normal was 1-24). I have looked into metal toxicity before & it sounded very probable however I did not test positive for mecury or lead. Curious if anyone else has had experience like this
- Had all vaccinations as a child, including chicken pox (which I have not had) - born in 1991
- Had multiple fillings in non adult teeth. Currently no fillings but did have many at one point as well as constant teeth abcesses
-Tests I have had done (that I can remember)-
- HLAB27 Positive (though supposedly negative for ankylosis spondilitis I still believe there to be a connection), I have also heard of a connection of this to systemic mold issues
- Iron & TIBC - All normal will provided numbers if needed
- CBC w/Differential/Platelet - All "normal" EXCEPT Lymphs (Absolute)
- Lymphs (Absolute) - 4.3 tested June 2017
- Lymphs (Absolute) - 3.4 tested Jan 2016
- Hemaglobin A1c - Normal
- Magnesium, Serum - Normal
- Estradiol - Normal
- Ferritin, Serum - Normal
- FSH & LH - Normal
- Allergen profile, Mold - All <0.10
- Testosterone, Total, LC/MS - normal
- Vitamin D
- June 2017 Normal (though I notice this is only 32.7 & normal range starts at 30
- Apr 2016 Low at 16.9 at the time was perscribed 10k synthetic vitamin D. Took one bottle than switched to the other form OTC
- C-Reactive Protein, Cardiac - Normal
- Comp Metabolic Panel - Normal
- Hepatic Funcation Panel (7) - Normal
- Thyroid Cascase Profile - Normal
- Heavy Metals Profile II Blood
- Arsneic - 12, Normal (range 2-23)
- Lead - 1, Normal ( range 0-19)
- Mercury - None
- Cadmium - None
- Lipid Panel
- Total cholesterol is high at 216
- LDL is high at 129
- Comp metabolic panel - Normal EXCEPT sligh high Glucose, 101 (range 65-99)
- Celiac Disease Complete Panel - Normal
- TSH Rfx on Abnormal to Free T4 - Normal
- Uric Acid, Serum - Normal
- Sedimentation Rate - Normal
- Rheumatoid Factor - Normal
- C-Reactive Protein, Quant - Normal
- CCP Antibodies IgG/IgA - Negative
I have had other tests however I do not have the results on hand. I also do not trust some of the results as one of the labs I was sent to was very disorgnized & couldn't seem to get my paper work right.
-Current Medications/Supplements-
Honestly I am so foggy & out of my mind I can't remember to take anything consistently (my work day can also be very lumpy so this does not help)
- Dr. Morse Heal All Tea
- NOW Calcium Citrate
- Lugols Iodine 5% 3-5 drops w/ACV (when I can remember, typically mornings)
- NOW essential 9 amino acid powder
- Moringa Poweder
- Vitacost probiotics (when I can remember)
-What helps-
- Medicated chinese oils & hot baths- pao sum, wong tik, white flower, tiger/monkey balm etc. I will add drops of this to my baths as well when feeling particularly achey. I find the stronger the concauction the better but the relief is temporary
- Yoga (at home) - if I have a tiny bit of energy to spare I do attempt yoga, I can tell this helps with the stiffness however my back & body are in such bad shape it's hard to make it through a session, my goal is to get to this daily
- Very restrictive diet
- I am currently 90% gluten, coffee, soy, egg & dairy free. Most of my mishaps w/this are because there was an ingredient I didn't see added to the food I am eating.
- About 85% eating free of my "allergens" goal is to be 100%
- Currenlty meat free aside from fish (cod, salmon & trouts usually)
-Current/Past Doctors-
- Rhemtologist (past) - Fibro diagnosis, low vit d. Mobic (useless) & cymbalta perscription (Have NOT taken). Didn't like the direction of treatment / wasn't listening to other related issues
- Neurologist (past) - Only went for one visit & was told my headaches are rebound headaches & was perscribed gabapentin (Have NOT taken). Didn't believe this to be the case nor did I like the rush rush attitude
- Women's Clinic Phycisians Assistant (past) - Went for serveral visits & didn't find the information to be helpfi;
- Physiscans Assistant Gastrointerology (past) - One time visit, believes I have IBS, scheduled a colonoscopy & endoscopy but they were booked out for months. I dind't trust the procedure so I did not follow up
- Naturopath (Current) - Much more willing to listen & is helping w/various blood tests
- Chirpractor (Current/Very Recent) - First time ever going to a chirporactic. My Dr. here is very informative during procedures & also suspects I may have a mold/heavy metal issue.
-Interested In-
- Grape Fast
- Salt Water Flush
- AIP Diet
- Anything & Everything!
I am sure there is more I am forgetting. I honestly feel like all of my symptoms are somehow connected / related.
I apologize for the lengthy post & any typos. I look forward to hearing any input you all have & am happy to share any of my thoughts as well to those who are interested.
God bless,
Lia