I got pregnant with my daughter in 2005 and gave birth to her in March of 2006. This is when I felt I began having a lot of what I consider neurological symptoms . A few months after having her , I noticed one side of my face had sagged , my eyebrow had drooped. I had numbness and tingling across my forehead . My symptoms were :
strange vibrating sensation under my rib cage ( left side ) came and went ) feeling of something going to burst under my left rib /side . Shoulder pain , neck pain , lower back sore .
Torso continued to feel sore and like I needed to stretch but felt as though I could faint from all the blood going to those parts when I stretch.
Had a period of time when I could not handle taking a shower , the hot water felt like it was assaulting my nervous system . I would get a zapping feeling in my body , and like jolts of electicity . I would get strange convulsive sensations . And would have to do sponge baths instead. Doing the dishes would bother me also.
tingling that migrated around to different parts of my arms , leg , torso , face
a vibrating sensation up my esophagus and throat .
a choking sensation, trouble swallowing , that would lead me to choke
on my food
eye blinking /nervous tics that I couldn't control . Brain zap feeling ( like a surge in my head of vibrating )
insomnia ( bad enough so I would stay awake til the sun came up and end up drinking alcohol to finally pass out and get some relief ) I was just so uncomfortable in my body that I couldn't sleep
palpitations , chest pains , squeezing feeling in chest
constant rushes of adrenaline ( feeling of butterlies in stomach , over and over again .. leads to tightness in chest and shortness of breath/smothering feeling )
a panic stricken sensation when I get the urge to urinate or have a bowel movement . I would feel really ansy and out of control , the feeling goes away after I urinate or go to the bathroom ( not your normal urgency sensation , more like the rest of my system would go on blink ). Almost like my nervous system would overreact to the regular feeling of urgency .
episodes where my eyes felt hot and dry , they would NOT water at all to relieve it .
then strangely on the flipside I would experience episodes where my eyes will drain tears for no reason and burn constantly , it will go on for weeks , then just stop .
feeling like the walls are closing in, weak , heavy sensation when ever I get the urge to laugh , pretty sad that laughing makes me feel bad and sick !!!
shortness of breath , so severe that I feel like I have to yawn , sigh or gasp for air , this is actually one of my most scary symptoms , and I hate it . This symptom is present most of the time , it’s the symptom I hate "THE MOST" because it feels like I am smothering , and I have been to the doctors so many times for it with no diagnosis .The always tell me evrything is normal and I am fine . It doesn't feel like I am fine when it feels like I am short of air and drowning for oxygen !
Within a year or so after my daughter was born , I started to feel like mornings were HELL .. It seemed no matter what I did it would take the first half of the day to only begin to feel a bit normal , I would be so sore and stiff everywhere . By nighttime it would be bearable , but by then the days over and I have to lay down and get stiff again.
I remember saying " I feel like my body is 100 yrs old or something" ( and still feel this way most days )
My arms fall asleep every night , I use to think I must be laying on them weird . But lately I notice it doesn't matter how I lay I wake up with my arms numb , and asleep. Now my legs seem numbish on the top layer .
I feel the blood drain out of my arms if I hold them up to do anything , then they ache and get too fatigued to hold them up .
This is a strange one and hard to describe but when I hold my arms both up I felt this feeling ( sensation) of heat come up my esophagus ( I am assuming it's my esophagus) . I have tried to describe this to people but no one I know has this , or knows what I am talking about .
Pressure & tightness in head , upon standing and sometimes just in general .Almost a squeezing in my head that feels like I might faint. Get this same sensation whenever I try to drink a lot of water
A long time ago I use to feel really good if I drank a bunch of water , its strange now when I push fluids I get this weird feeling , and feel like my head might explode .
Episodes where my lungs feel "weak" and my breathing feels shallow and shakey.
I started to search for answers online , searching my symptoms and looking for answers . I kept coming up with lyme disease , and /or wheat gluten allergies .Also a lot of my symptoms matched reactive hypoglycemia , I requested a 6 hour glucose test and was told that my bloodsugar patterns showed a "classic " reactive hypoglycemia dip . My blood sugar dipped down to the 40's , I logged my anxiety symptoms during the test and it corresponded with the dip in blood sugar. I decided to try atkins diet and noticed a significant decrease in the shortness of breath , and of the body pain . I felt level most of the time and a lot of my symptoms eased up . I lost 38 lbs and just felt considerably better. I became very extreme about not eating any sugar , fruit , or grains .. after about 2 yrs on the diet , my problems creeped back and I was a mess again . I started having charlie horses and aching in my arms and legs so bad that I could not raise my arms to hang clothes or brush my hair . I was also having a lot of heart beat irregularities again . I added back some carbs ( in the form of hard fruits like pear , apple , also plain whole fat yogurt with unsweetened berries etc.. ) the arm and leg cramps let up so I thought I had the answer.
*Note : In retrospect .. I feel that was a similar "flare " of whatever I am having recently .
After adding back a little carbs , I gained back a few pounds but stabilized at a good weight and stayed there for a little over a year , then eventually started "cheating " with bad carbs and ultimately falling off the diet all together . Currently my diet includes all the foods I once deamed responsible for my reactive hypoglycemia and my soreness. I keep trying to get on track , but then quit.
I continued to have body pain , crushing fatigue and all the other symptoms off and on , with the vibrating , numbness and tingling . Trips to the ER, years of biweekly appointments. I had all kinds of tests and was finally told that I had extreme fibromyalgia , and was offered pain medication . I refused the pain meds because I was afraid of becoming addicted or living my life in a fog .
I got pregnant with my 3d child in 2010 , she was born in December 2010 . That pregnancy I had kidney stones that I passed in my 3d trimester . A week after I passed the kidney stones I went into labor , my labor lasted 3 nights and 3 days . I was 3 hours and 20 minutes of hard pushing . ( she was in superman position and her arm was blocking my cervix ) . I had an epidural the 3d day .
After I had her I had trouble walking , my legs felt very strange . I also felt like my ribs and my diaphram were damaged , I would feel like collapsing in the shower for weeks after I had her .
September : took the Plan B birth control pill ( emergency contraception)
Late September of 2011 , I decided I wanted to lose some weight and start feeling better and clean up my diet . I heard about the HCG diet and decided to give it a try. Thinking back I think I wasn't feeling right before I started the low calorie phase of the diet , but anyways , I noticed I was having really bad inner trembling , and would get intense hypoglycemia symptoms . My throat would close up , my face would get stiff , I would shake and feel very weak . I would sweat and feel horrible. I thought it was just my blood sugar , so after about 6 days in on the HCG diet I gave up . Even after a few days on a Paleo like diet , I noticed I was continuing to get this shaking feeling , like my whole body was trembling inside ( but didn't seem visable on the outside ). I worried about the hcg having changed something for the worse.
Then one morning I woke up feeling like the usual . I went to do some errands in town with my 10 month old and my 5 yr old . I felt tired and yucky but nothing out of the ordinary. I started to get a bit stressed at the check out , and began trembling . It came on quick but I felt like my body couldn't tolerate the stress. I shook my way to the truck . By the time I reached the truck , my arms were jello , my legs were jello . It was the WORST attack of weakness I think I've ever had ( I felt stronger on the 3d day of labor ) . I had a very hard time climbing into the truck and lifting my baby . I was s haking so uncontrollably that I couldn't even use my hands to buckle my baby into her carseat . My head was bobbling and felt like I couldn't hold it up . I ended up leaving the parking lot with her unbuckled. I was terrified. I couldn't think clearly . I felt like something was terribly wrong with me, I wanted to hurry up and get home so I could relax, yet deep down I didn't think it was "just " a typical panic attack for me . I tried to get my cell phone to call my mother and talk to someone about what was happening , but I couldn't even hold the phone or push the numbers . My fingers wouldn't work .
I pulled over several times on the 20 minute ride home , once to buckle the baby's carseat , and the other couple because I felt as though I was going to really pass out.
I got home miraculously in one piece and drank some milk and tried to nibble on some bread. The worst of the attack slacked off , but I did not feel right . That began 3 months of what got worse . I started having shaking fits , then began having problems coordinating my limbs. Both sides . I had a swollen thick feeling inside my head. My lower back ( tailbone ) felt swollen and sore and "thick" . I felt extremely sensitive to light, sound . People talking would make me want to scream , like their voices were attacking my brain. I couldn't brush my hair , change the baby , or write , or wipe myself . My movements felt jerky and I got such fatigue and muscle burn that I would literally have to stop and sit or put my arms down . When the worst of it hit , my torso felt numb and tingly and like it was cold and asleep . I had a vibrating feeling inside . I kept tripping over my right toe /foot . I also couldn't walk far without it feeling like my legs were in cement or that I was wearing heavy wet winter boots and wet wool pants .
I have/had crushing fatigue so much that I would feel paralized , and my body would feel as though it was "disconnected" from my brain , I would want to move something, but my body couldn't react. I was scared to death . I tried to describe it to everyone around me but no one understood what I was saying . I searched my symptoms online and I could highly relate to the descriptions of people with MS flares. I went to the doctors and they sent me for MRI's of my lower back , neck and brain. I did the lower back and the neck , but had a fit of claustophobia and couldn't get thru the MRI of the brain . I will attach or bring copies of my MRI and other blood work done . They saw problems with my discs and saw degeneration , but no lesions . Although I have not had the brain MRI's done yet .
After 3 weeks of this "flare" of neurological symptoms . It seemed like almost over night it disappeared for about 2 wks . I felt about 85 % better . Only to have a lot of the symptoms come back again , but have remained relatively mild in comparism to the inititial exaberation of symtoms that 3 weeks, when it was at its worst.
I want to note that in retrospect I had other symptoms shortly before that initial attack driving home from shopping , that I feel are notable :
I had a notable hoarse voice , others commented on it , I do not recall hurting my voice and did not have a cold .
terrible jaw pain & stiffness, so my face aches and it feels like I chewed tough steak for too long ( but didn't)
about a week before I started to get the shaking weakness fits I was getting episodes of cold chills and sweats , I felt feverish upon any exertion ( I noticed this mainly when I was trying to do my daily kennel cleaning tasks ) . I blamed it on coffee, or on the start of that diet ( but I have stopped both things and it still does it )
I also had diarreah prior to and during the 3 wks
I also had an outbreak of that "sore" on my buttock cheek , and it seemed worse than usual , I had some "extra " pimples nearby it that I think were the same as the original series of blisters .
I felt as though my nerves were "raw" extremely aggitated and weak. I could not tolerate the normal stresses that I usually handle , I was snappy and short with everything .
I noticed I did not get ANY adrenaline rushes during the 3 wks , I thought that was strange .
At the current time , I am just sore all the time , have terrible muscle fatigue , anxiety , and off and on again mild coordination problems . Episodes of vibrating , where my teeth even feel like they are vibrating or "humming" , it's such a strange feeling !
I need to exercise and to lose about 30 lbs or so , but the hypoglycemia symptoms are so severe that I am not able to stick to anything . I am afraid to exercise because I am afraid of waking up any more sore than I already am , or to "over do " it and not be able to walk or use my arms . I don't know what the right thing is to do about this . I want to be more active , but I'm afraid of overexerting or exhaustion.
I do not know what to do anymore . I feel like there is something terribly wrong with me , but the doctors are all just missing it . This recent attack of not being able to walk or use my arms has been a wakeup call , I am afraid that if I don't figure out what is wrong with me I am going to end up in a wheel chair and cripple.
I often feel like my body is just a huge burden and life is just painful . I am not suicidal , but often have thoughts of dying and how in some ways it would be a relief at least physically ! I am depressed in the way that I feel that I am not able to enjoy my children because I am distracted with my symptoms and just not able to focus on the moment , instead I am pacing , stretching off the soreness , and now not able to braid my daughters hair or fill out her school papers. I am now back to square one with my fear of driving , so getting my 5 yr in to school in the a.m. is a big ordeal .The teachers and her father act like I just don’t' care about her education , but really I am struggling just to function . I know the teachers are frowning on me and do not know of my health issues , but I can't bring it up to them because I don't even know what is wrong with me to explain it . I am scared to go into a fit again where I cannot physically drive us home or get out to get help or dial the phone to call for help.
I own a kennel and my work is very demanding as I take care of 26 dogs on a daily basis and litters of puppies . I am scared of what will happen to my finances and my home if I can't physically perform my job ( as it is I am struggling to do the daily tasks , I somehow manage to wade my way thru , and called on family for help when I had trouble walking and using my arms ) .
Some things I feel might be significant :
I was using high concentrations of bleach the past couple of years in my kennel ( I am state licensed and they require me to disinfect using a solution of chlorine bleach ) . It mixes with the dog urine and feces I am mopping up and it bubbles and fizzes and smells really strong , it burns my nose and my eyes water and I can "taste" the bleach hours later.
I stopped using the bleach and began using vinegar, baking soda and borax for now .
I can't tolerate caffeine , it brings on severe shortness of breath. It was especially bad during those recent 3 wks , I quit caffeine since then .
I recently got my home drinking water tested and it tested high in arsenic , high ph , and high coliform.
I had mildly low Vit. D levels
Tested Positive spring of 2010 for fairly significant H Pylori
I had slightly elevated WBC
I had an Igenex panel 6050 lyme test done since the recent 3 wk neuro episode. It showed positives on bands 41 and 58 . the flagella one and the heat shock proteins.
For years now whenever I drink alcohol as soon as it hits my stomach I get an ache that sweeps thru my entire body and my muscles feel as though they all hurt and ache real bad. I use to use alcohol at points to get some pain relief when I couldn't stand it anymore , but lately I can't handle the pain it causes and can't get past the first drink .
I set out rat poison bars within a couple weeks before my recent neurological attack ( I was really careful and used gloves and washed hands well etc.. , I had to use it we've had rats who moved in to the kennel and were chewing everything and taking over , I spent a year trying to avoid using poison and trying everything else but nothing worked )
I am breastfeeding currently . I noticed the severe arm fatigue at approximately the same length of time with breastfeeding my middle and youngest daughter .
Also I would like it kept in mind as to treatment plans that I would hope to be able to continue breastfeeding if at all possible . She is probably my last baby and I would like to be able to breastfeed her until approx 18 months if possible . I would like advice regarding treatment protocols /breastfeeding/safety .
To sum it up , I basically feel like total crap most of the time and have for approximately 15 yrs . I have been to countless doctors and emergency room visits. I have so many strange symptoms and am told there is "nothing wrong with you " . I don't believe that .I know there is something seriously wrong with me . I talk to family and friends and most of them look at me like I have 3 heads when I mention all these strange symptoms .And I am always the one who "never feels good " but I think they think I am making it up or exaggerating because I look fine.