For the sake of no other ideas.. I write this list. Out of fear of being called insane.. or being accuses of hypochondria.. I am at my wits end. Someone.. somewhere out there needs to know what is going on with me. This is not in my head. I am not seeking drugs.. I am seeking help and answers... and I am not seeking attention. I am just sick of feeling sick.. tired of feeling tired. .. and hoping to be normal again. Even if in the end it is a coroner.. someone tell my family what happened to me.
Some of my list may mean nothing.. but you never know.. so I am including it all.
Migraine headaches. started in High school but only occasional. Between 2003 and 2009 I was in the ER 23 times with a migraine. Most migraines I dealt with at home as best I could. I would say from age 16 I have always had a headache every day... just the degree of pain varies.
I have glasses but find no relief wearing them and at times they make it worse. I have noticed that my eyes “twitch” more now making it hard to focus on reading as I look at the same line several times.
When pregnant in 2006/2007 I went on disability the migraines were just out of control.
In 2009 I began botox injections to try and alleviate the severity of the migraines. It helped but did not eliminate them. My jaw is constantly tight and I grind my teeth. I have a bite guard for my mouth but find it too difficult to sleep with it in.
Stomach pains began at age 13 when I was admitted to hospital for most of the school year. No conclusion was found and I was released to cope with it through diet. When I was 23 they diagnosed as IBS and treated with smooth muscle relaxers (Dicotel) Eventually the Dicotel stopped working. Attacks last anywhere from 5 hours to 15 months.. severe cramping, bloating vomiting, diarrhea . Known triggers : eggs . Broccoli, cantaloupe.
Attacks are getting more severe as I age... happening less often (This may be in part to knowing some major triggers and avoiding those foods. ) but lasting longer.
Three years ago an attack lasted 15 months ( almost consistently) resulting in the loss of 30 lbs and malnutrition as food never stayed in my system long enough to be absorbed.
The last attack was 8 weeks (Jan -Feb 2010) and consisted of severe bloating, pain, and feeling like I was too short for my insides. I was examined for gall bladder problems and came out negative. Sent home to suffer.
The last 2 long term attacks both seemed to end after being on antibiotics for a sinus infection.
Joint Pain / Muscles At age 10 my knees hurt so bad I could not get out of bed. Dr's diagnosed Juvenile arthritis and said as my bones and joints slowed in growing it would get better. It did.. I have always had "tender knees" but the pain went away.
My spine has said to be fused near the top by my neck. Chiropractor refused to treat me for fear of damage. not sure of cause.
Tested for carpel tunnel in 2004 but electric probe test came back as not carpel and was sent on my way.
2010- hands and feet extremely painful . It feels like I am walking on broken feet with rocks in my shoes. My hands are so weak and sore I can not open jars or push a shopping cart. Walking is becoming painful and I feel like I always hurt. I have lost a majority of flexibility regardless of trying to exercise. I always describe it as if someone has hit me across the shoulders with a baseball bat.
Skin Sensations If I scratch it feels like I have a sunburn. Scratching with pressure feels like bear claws ripping me apart. If my husband hugs me or gives me "love taps" I cringe .. what never used to hurt now brings tears to my eyes. A child elbow or knee putting pressure on me brings tears it hurts that much.
Numbness My hands and feet will go numb for no reason. I have even noticed my face and nose with suddenly just go tingly. it will last anywhere from 15 minutes to a couple of days.
Body Temperature I am always saying I am hot or cold.. I can never just be a comfortable temperature. At night I am like a furnace and sweat so bad I soak the sheets.
Blood Sugars Even though I have been tested and all was well.. I can not keep blood sugars level . I will suddenly get very weak and dizzy and shake. As soon as I eat some fast sugars it will be fine. If I "sugar crash" it happens very quickly with no warning even if I have eaten properly.
Sleep and Fatigue I am constantly tired and looking for bed by 8pm... and then when I get there I toss and turn, get up several times a night and feel like I am "hovering" in sleep without going deep into sleep. Some days I have to stop half way up a set of stairs and take a break.. I just can't keep going. I feel like someone has “pulled my plug”
Bladder I have been noticing for the last 2 years that my bladder is weak. If I sneeze or cough I leak.. and I do kegals.
Dehydration I tend to have dry skin, eyes and sinus regardless of how much water I drink.
Hearing In the last 6 years I have had 5 bouts of sudden hearing loss in both ears. I have a constant ringing that never seems to fully go away. On days of a migraine it is incredibly bad. Dr treated SHL with steroids and hearing returned. When pregnant I was legally deaf for 9 months before I started to regain hearing. Slowly it returned but on migraine days I do notice it is harder to hear.
Dizziness After my son was born I had severe vertigo and was told it could be related to my ears. I also suffered dizziness after my daughter was born . I was examined and diagnosed with Mitral Valve Prolapse and given beta blockers.. over time I stopped taking them because I did not feel the need to continue.
Weight Fluctuations 7 years ago I suddenly gained 30 lbs in a month.. was 105 and went to 135. Since then it seems like on a daily basis I change size. Even now my weight will vary from 145 to 157 in the same day!! On some days I look pregnant I am so big.
I have always been thin. Even 40 weeks pregnant the most I ever weighed before this was 135 lbs.
Moods I find myself irritable and easy to anger. I seem to be constantly in a state of frustration and the verge of lashing out or tears. As time goes on I find myself forgetting things and even the names of things. I used to pride myself in memory and organization. Now I need a list to go to the store for 3 items. Noticed a severe lack of sex drive in the last 11 months.
Heartbeat Not sure if it is mitral valve. but I can feel my heart skip a beat. At times my chest is tight and breathing feels as if I am trying to pull air through a straw.
Nails and skin I have vertical ridges in my fingernails and they are brittle and break off easily in horizontal strips.. almost like they peel off.
I break out in small blisters on my hands and arms. My fingers will rash and be raw around my rings for no reason and then it goes away just as fast. I am noticing dry red patches the size of quarters on all areas of my skin. Lotions and hydrocortisol creams make no difference.
Tests done in the last 2 years
Colonoscopy (2 times)
Barium x rays
ulcer lemon drink test
CAT scans on head for ears
ultrasounds of abdomen
Blood work - all the basics covered (one smear taken at peak of attack showed inflammation and back to normal on a repeat test)
Electrode test for carpal tunnel
Age 9 Surgery on eye muscles in both eyes
Age 10 Juvenile Arthritis
Age 12 Tonsils out
Age 13 First stomach attack
Age 16 Car accident
Age 18 Arthroscopic knee surgery
Age 19 Cody was Born (premature labor at 32 weeks held full term)
Age 20 ER trip for stomach
Age 21 Santana was born (premature labor at 21 weeks held til 32)
Age 23 Diagnosed with IBS after no other conclusion could be made
Age 23 Molar pregnancy terminated and treated with Methotrexate
Age 24 tubal ligation
Age 25 Appendix out
Age 32 Tubal reversal
Age 33 Miscarriage at 10 weeks. Massive hemorrhage
Age 35 Kenny was born (premature labor at 30 weeks held to 38)
Age 35 15 month “IBS attack”
Age 38 -8 week Stomach attack no conclusion. Increased inflammation in bloodwork
Stopped smoking after 25 years on Jan 21/2009
no drugs other then B/C and tylenol unless it is prescribed.
NOT a heavy drinker. Drinking causes diarrhea so I avoid it
Oh my, you've certainly been through a lot. Have you ever seen a rheumatologist? You definitely have one or more auto-immune issues going on (auto-immune inner ear disease, maybe Lupus or RA or ?) and quite possibly fibromyalgia on top of that.
You need to have a Lupus panel drawn (tests ANA and other related blood tests) and a complete work up by a rheumatologist. I really hope you can find a good one and get the attention you need and deserve.
Hey I am 24 and suffer from most of the problems you just listed. There are only actually a couple of things I haven't dealt with yet. I understand your fustration. I have been dealing with this that I know of for 7-8 years, but has been thought that it may have been going on longer. Even as a young adolescent, I always wanted to be in bed early as possible. Even as a teen, friends gave me a hard time because I wouldn't stay out later than 8 or 9 at the latest. Hope you can get some answers. I may have found a doctor that can give me some. I will find out Monday. Stephanie
I felt like I was reading my own list of symptoms down to the miscarriage. Please go see a rheumatologist. I think after reading your symptoms that you have Psoriatic Arthritis and Fibromyalgia. Have you considered Lyme Disease? I have been diagnosed with Osteoarthritis, then Psoriatic arthritis and fibromyalgia, I have a new rheumatologist and he has now diagnosed me with Osteoarthritis and Fibromyalgia. Good luck with getting some answers but do research fibromyalgia as I think you will find many answers.
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