/ EDIT
I’ve been hesitant to share specifics because I don’t want pity and it feels like I’m very exposed when I think about it but the fact is… I really value transparency.
I have a lot of different medical things going on that I believe are all connected. I’ll first start by saying I am 33 now so that if you’re reading this you’ve got a pretty good idea how long I’ve been dealing with these issues.
When I was around 13 I noticed that I could pop my right hip in and out painlessly and thought that was pretty strange and a bit cool, because lets face it I was a kid. When I was 14-15 I had some issues with my knees being “weak”. I had tried to join cross country but ended up with horrible pain in my knees and my primary dr said it was muscle weakness around the knee, I went to physical therapy a couple of times. After that I started exercising and dancing more at home on my own but my knees were never running material.
My stepdad got a motorcycle when I was about 15/16, he took me for a ride on it after which, my skin was hurting but also kind of numb feeling and I broke out in painful hives. Sun? Wind? Something environmental? I have no idea what happened and that was my first ever experience with hives. I did not get back on the motorcycle unless my skin was completely covered.
2004 – I was 17 and had my first baby at 38 weeks
2005 – 18 years old: I was having trouble keeping weight on no matter how much I ate. My clothes were basically falling off of me and people thought that I was doing drugs.
2006 – I kept getting sick with strep throat so I had my tonsils and adenoids removed. Pregnancy with second child; I was put on bed rest right around 20 weeks as my body was trying to go into labor early. My uterus was “ballooning” near the cervix and I was starting to dilate. Meds and bed rest worked. My water broke at 37 weeks, no contractions though and I had to be induced, it was a stressful delivery but with a good outcome.
2006-winter- 2007 is when I started getting strange rashes, many ulcers in my mouth that made it difficult if not impossible to eat and I was literally starving. I had to wean my baby abruptly to a bottle because I couldn’t make enough breast milk to keep her satisfied because I couldn’t take in enough calories because the pain was unbearable. I did eventually get a prescription ointment that would cover the ulcers enough that I could eat soft foods quickly but that wasn’t an easy task. I had to tell my primary doctor to consult with another doctor and figure out what I needed after she incorrectly called in a lidocane mouth rinse that specifically said (DO NOT EAT WHILE USING THIS MEDICATION). I was livid. I called the doctors office, I got snippy I told them I was starving and not producing enough breast milk for my infant and try again after consulting with someone or doing research. I also put my back out of place so badly I was pretty much confined to a laying down position for a week. It hurt to breath. I couldn’t make it to the doctor to get my back adjusted and I didn’t have a support system in place to assist me through that time. It was fucking horrid. I almost pissed myself a few times trying to climb the stairs to the bathroom. I’m sure there was more going on but that was a long time ago. 2007-2008 I had a lot of random chest pain but I don’t think I mentioned this to a doctor, I blew it off as being too young for heart issues so it must just be anxiety.
But I got through all of that and didn’t have many other issues until after my youngest child was born(2009) she was born at 36 weeks. In 2010(23 years old) I started having a lot of issues with food sensitivities, fatigue, depression/anxiety, and unexplained pain in my hands. I had a new doctor at this point. All of the sudden I also had seasonal allergies. My doctor prescribed a steroidal nasal spray and prescription allergy medication but said I could use over the counter allergy medication if I chose to. The prescription saved me some money, but hurt my stomach so I switched to OTC allergy medications. I started getting ulcers in my mouth again(I would later discover the nasal spray caused ulcers). I relied heavily on those allergy meds because if my sinuses got too snotty, I’d end up with an infection. At one point I had no symptoms of a sinus infection but I had symptoms of a brain tumor. My doctor ordered a CT and discovered my tumor symptoms were actually from a bad sinus infection.
At one point prior to this I had another sinus infection and was continuously passing the germs to my kids. Their pediatrician was the one who discovered this and called in a prescription for me as well. I feel like he took one look at me and knew where the infections my kids kept getting were coming from. So I kept with the allergy meds and went to the doctor any time headaches started coming back as that usually meant another infection in my sinuses.
2010 – I had to have my IUD mirena removed because it caused horrible cramps.
I also had some nerve testing done on my arms to see if we could pin point a cause for my pain and stiffness in my hands along with the numbness in the ring and pinky fingers. This all came back normal and I didn’t get any explanation. My blood work was normal too. Doctor didn’t suspect carpal tunnel syndrome and that was the end of trying to find answers. I learned to live with the pain.
2011 I decided to try a gluten free diet after my food issues were getting worse and reading that it can help with pain. Turns out it helped a ton! My hands felt much better. But it isn’t easy to stick to and eventually I started eating gluten again.
In 2012 I started having some pretty shit days again, migraines and deep deep feelings of guilt that I couldn’t keep up with life anymore, I was a control freak and I hadn’t learned to delegate or depend on others. I decided to try a vegan gluten free diet but I cannot remember what year that was… 2014? I felt amazing but restrictive diets are hard to stick to.
Sometime in 2013 I started having low grade fevers. The only other thing that accompanied the fever was headaches or migraines. I also had some random stabbing chest pain near my heart, the doctor said it was anxiety. My allergies also got worse at this time. I had allergy testing done after 2 weeks off of my OTC allergy medication. My results were negative except for being allergic to cockroaches. But I discovered that I had fewer allergy symptoms off the OTC meds! So I stopped taking them. In 2014 we went on a camping trip with friends and I decided it would be best to take some seasonal allergy pills along with. My seasonal allergies were fine with the OTC medication but suddenly I was having contact dermatitis on my lips and mouth from strawberries(which I have always eaten with no issue). For the following week I had issues with all the high histamine foods I ate. Fruits, nuts, etc. At the time I was eating super healthy…salads, smoothies, so this was very disappointing not to mention uncomfortable.
I also suddenly became very allergic to latex, which I figured out after a painful dental appointment one week, and then a gynecologist appointment the next… exposing your genitals to an allergen is horrific in case you didn’t know.
2013 – The mysterious vibrating left leg. You couldn’t see it, or feel it to touch, but my left leg would feel like it was buzzing. It would last hours at a time.
2016 I was in a car accident which led to a flare of all my symptoms thus far. I think it was the stress on my body, the stress on my mind. Moving TWICE in 6 months. My hips started hurting so bad that I would lay in bed and cry. I cried for the life I wanted but couldn’t have. I cried for my children and husband having to deal with me being so damn broken. I became so depressed over those last months of 2016. I was definitely a danger to myself. I believed my family would be better off without me. I felt like a nuisance. After the accident I was seen by a chiropractor for several weeks and lots of adjustments. Sometimes the adjustments caused migraines. My hip and low back pain just kept getting worse and nothing helped. I stopped going to the chiropractor except when it was absolutely necessary.
At this point I was guessing that my pain was caused from fibromyalgia.
January 2017 I went to a new doctor after years of not having a primary doctor. I talked about my depression and anxiety, I talked about my pain. I was prescribed Cymbalta and I noticed an improvement within a couple of weeks(I also had blood work done to rule out lyme, inflammation, arthritis, and any deficiencies: all my tests were normal). My depression and anxiety decreased and my pain was almost gone except for days when I was very active. I started working in the spring although it was short lived because the work was very stressful and anxiety inducing which caused me to have more “bad days” than good along with skin rashes that were so irritating that I was scratching myself raw and causing bruises.
I decided to quit and spend more time focusing on my health and home and our little farm. I had fewer bad days and didn’t need to modify my diet (I gained 20 pounds between 2018 and now I’m sure as a result of this new food freedom!) And our farm grew so much… we added more chickens, ducks, goats, rabbits, pigs… I was feeling good, cymbalta changed my life.
2018 I was having a lot of chest pains for a few weeks so I decided to go to the dr for that before it stopped again as fast as it started. But the heart monitor didn’t find anything abnormal.
In spring 2019 I started working again outside the home. And this is when my symptoms started getting worse again. More bad days, especially after physically strenuous days. We also did some renovations in our house that really wiped me out physically. It started taking more time to “bounce back” again to having good days.
Over the summer I started getting rashes from being in the sun. I was working a lot of hours and just completely wiped out by evening so the garden I lovingly planted in the spring became overgrown and disappointing. I felt yet again, like a total failure.
I mostly just dealt with everything until the fall when I decided to start searching for a diagnosis and help feeling better. The pain was impacting my mental health.
The end of October 2019 my doctor ordered blood work again, referred me to a rheumatologist, and increased my Cymbalta by 30mg. The side effects from the Cymbalta increase were terrible and I basically slept through November with no improvement in my pain symptoms so I took myself back down to 60mg.
In November the rheumatologist ordered some more blood work, it once again ruled out inflammation, arthritis, lyme, lupus, and autoimmune connective tissue diseases.
I was however diagnosed with Raynaud’s phenomenon, which is fairly common but at least I had one answer for some weird symptoms.
This year we got rid of some of our farm animals, a lot of them actually, I couldn’t keep up with it.
2020- Early this month I went back to my primary doctor for the hand pain that had been bothering me for most of December. He thought that it was tendonitis in my thumbs and referred me to a hand specialist who was able to get me in just a few days later. They took xrays and concluded that it seems to be rheumatological in nature. Prescribed 2 aleve 2x a day and said to follow up with the rheumatologist. NSAIDS had started hurting my stomach at this point so I only took them as needed. I started needing them more and more which led to a stomach ulcer.
So now I wait until March(written 1/22/20)
I’m working on cleaning up my diet and forming good healthy habits again. Regular exercise is the hardest because I have a lot of days when I feel like exercise is just going to max out my abilities for the day.
A couple weeks ago I danced to a song with my 10 year old…. 5 minutes of dancing caused me to feel dizzy, nauseous and weak. I had to lay down for 30 minutes to feel better. I’m not that out of shape(I’m 5’3 & 140lbs) and on days I work I’m on my feet doing things for 5-7 hours. However, after this month I’ll be super part time working only a couple of days a month because I just cannot work and keep up with my family/house or my health. I took my time coming to this decision as I really like my job, but I need to be home more. I need more time… I need to start going to counseling again because carrying all of this shit around is heavy and I know that talking helps.
Current Symptom Recap:
Tendon, Muscle, & Joint Pain
Low Grade Fever/Temperature Disregulation
Migraines
Rashes/Skin Sensitivity
Raynaud’s Phenomenon
Back Spasms
Bursitis
Subluxations – Joints That Are Loose/Weak
Tendonitis
Fatigue
Buzzing Leg
Hand Pain & Numbness
Chest Pain
Muscle Weakness
Exercise Fatigue
Depression & Anxiety
Sensory Issues
