My Letter to my Doctor 12-21-06

Dear Doctor (the name of my dr. shall remain confidential)

I am writing this description of my symptoms because I find it easier to write them down. I have looked everywhere online for information of my symptoms, and I feel that I have Hybermobility Syndrome and Fibromyalgia. I want to get the correct diagnosis of course so I will leave that part up to you. In this letter will tell you how I feel everyday, past occurances that may be related, and finally how I feel it might all be related to fibromyalgia.

My Present Symptoms, and a synopsis of my day.

When I wake in the morning I am greeted with a feeling of my body being paralyzed with pain. I am guessing this is morning stiffness. The first thing I am aware of is my hip, a deep throbbing pain that radiates all the way down my thigh, then I realize how achy the rest of my body is. I climb out of bed, every possible back muscle hurting as much as it possibly can without being beaten physically. My hips at this point are experiencing both a radiating and sharp pain right in the joint… stabbing me hard, and sometimes knocking me breathless. I pause for a few moments normally to brace myself and think to myself “it’s going to be a long day”. But this is my every day, and it has been for years.

I’ve somewhat gotten used to it, so that I know what to expect in the mornings, it’s almost become part of my routine, although it does make me quite cranky. I have woken up this way since age 19. At first it was only my hips, the same pain as now. But then it began to encompass my whole body, back shoulders, arms, legs, but the pain has mainly stuck to my hips and back areas. I blamed this pain for the longest time on Depo Provera, a birth control shot. The first time I received a depo injection must have been December ‘01 (I was 217 pounds.) the last time I received an injection most likely was June or July ‘02 right before my father died. (dates in my head are foggy, so if I’m not accurate forgive me, I am stating it as best as I can remember. But I can probably get my medical record if this is needed later.)

My mind is so blurry, i don’t even remember exactly the year my father passed, i have to ask my mom all of the time. I can’t even remember when I was married, or any dates. And names and faces are hard to remember alot also. I have anxiety and depression. I used to feel extremely suicidal but now I want to live, that’s why I’m making an effort to get better now. I wanted to die because I felt I was being a burden, and I just don’t want to deal with physical pain anymore. On top of that I am stressed about my lack of insurance, and inability to work ( physical jobs, and I’m sure most office jobs also due to my sitting issues)

Sitting and Standing are difficult for me for long periods of time. When I am sitting sometimes my legs feel swollen and like hard plastic. Sometimes they go numb, I have no clue why. My back, shoulders, neck, and hips kill me when I am trying to do computer work, or even playing games. While sitting on a recliner or a couch I must change positions all of the time due to one hip aching too bad, this happens within about 5 minutes of sitting down. I am never unaware of my hip pain it is always there as a dull ache, I want to avoid the sharp stabbing pain… and that makes me switch positions.

Standing is something I can’t really do for over 5 minutes. I don’t leave the house anymore. Period. I currently haven’t been out shopping for over a month. If I do go out I always need a cart for support. I cannot let myself use the motorized chairs even though secretly I know I probably should. Anxiety and Back pain are the two reasons I never go out anymore. My life has become my living room. My last excursion outside was to purchase a puppy to help me with my depression symptoms. I only went along so I could pick out the one I wanted for myself and even then I was reluctant. The people were very social and had me standing for an hour, I was about to cry. The pain was so intense I started to black out, and nearly fell in their house. I do not speak up for myself very often, but I blurted out I needed to sit down because I was passing out. This is one of the events that I took as a warning call, and they agreed I should see a doctor. To describe the standing pain as best as I can I would have to say it is akin to having your back hacked to pieces over and over again with an axe. It is sharp, intense, and the worst pain I have ever dealt with in my life. It brings me to tears. I rate this pain a definite 10.

The longest thing I normally stand for is when I am preparing food (ie: a sandwich) I will lay the bread out, and by the time I get the salad dressing out there is a burning sensation. I’m guessing within seconds. I can finish making the sandwich and be ok… but it impacts me for the rest of the day… If I get to the burning point my back will not stop hurting till next morning or even later. Any strain on my muscles or joints seems to linger, this does not only occur in my back. But the back seems the worst to strain. The pain as a result of standing has been with me as far back as age 14-15. I remember working as a dishwasher for my family’s restaurant and being in tears, slow at working, and requiring help to finish the dishes. But I tried my best. But it has never been this horrible.

While writing or dealing with computers I get aches in my hands, wrists, and arms. When getting close to the blackout point while standing, my stomach feels like it’s pushing forward and I am concerned I might have a hernia. I was born with one, I’ve read it’s not uncommon for it to reoccur. I frequently get stomache pain, nausea without vomiting. I am also concerned it might be an ulcer. I frequently have what I consider to be constipation (and diarrhea when i eat certain foods) I also feel tired all of the time, and have difficulty concentrating often. I cannot complete most things required for proper self care and hygiene allthough I try my best. Getting dressed is a challenge because my arms go limp when I attempt daily tasks that require alot of their use. It takes me longer than average to put my clothes on, get a bath, and take care of myself. It exhausts me. My husband has been helping me with nearly everything except hygeine, he runs errands for me in the house, and takes care of everything that I can’t (which is everything)

Some Additional Concerns:

In the past I have passed out and blacked out on a number of occasions. The first that I can remember was in kindergarten… I was leaning forward in a chair and i blacked out and hit my head on the table, it required stitches. In 2nd or 3rd grade I was walking in from recess, I blacked out and ran into a glass wall. In charter hospital of paducah I was waiting in line to get my vital signs checked when I blacked out again… they said I ran at full speed into the front desk. I had no clue what had happened. At age 19 I was in a mall store talking to a clerk when I fell to my knees and gained conciousness just before i hit my head into the glass desk. These above events were not as a result of any pain, in fact I remember feeling perfectly fine on all of these occasions except the last one, where I had mild back pain from walking stress.

Hypermobility Syndrome & Fibromyalgia:I found HMS quite by accident online. I was searching to find out why my bones are always cracking. (most of the day my bones make cracking noises and pop with movement) I realized that I fit in with the critera of this syndrome. I can bend my thumb to my wrist, and I’m pretty sure I can do everything else except putting my hands flat on the floor, but I come close (even at my weight) This is the syndrome that eventually led me to read about Fibromyalgia. I also feel I fit alot of the fibro criterea, but I would like to leave the diagnosing part up to you. In the end I just would like to feel better and ease the pain.

Advertisements

March 6, 2007. Doctors, Fibromyalgia, Hypermobility, Pain, Suicide. Leave a comment.

My Past Medicines in review, what worked what didn’t.

I have taken Zoloft (sucks) Paxil (sucks more) Trazodone (don’t remember) Risperdal (WTF were they thinking?!? it made me hear voices) But all of these medicines were before I turned 18, the latter is my recent experiences with attempting to feel normal by using meds.

Effexor XR (75mg dosage) = Awesome for depression, seemed to relieve pain a bit, not as much as I’d like, but it’s an antidepressant. I felt it did it’s job well. But I fell into a depressed mood (over not being able to get more effexor) and had trouble taking my meds every day. I have an odd saving tendency, and i tried to take it every other day near the end of my prescription… to make it last. *slaps self in head*

Flexeril (Cyclobenzaprine) = I forget dosage, but it seemed to kinda help the pain. Definitely makes me sleep every time i take it, so I avoid it until I’m about to go to sleep for the night.

Diclofenac (75 mg dosage) = This is okay, but not great for total pain relief. This is good when I feel swollen. I don’t think the Doctor really knew what he was doing when he gave me this, it isn’t powerful enough for my pain. Causes a bad headache too.

Cymbalta = I haven’t really been on this long enough to feel it’s effects. It makes me happier, kind of a clarity happiness and not the fake ‘awesome’ effect other antidepressants seem to cause.

Ultram (Tramadol) = I first took this tonight, I have not felt normal in a long time. This completely took the pain away. I believe it’s one of the best, but perhaps not for long term use.

Demerol = Warm Mushy waves of immediate feeling good. Thats what it felt like… I got injected after an intense muscle spasm that left me in tears in the ER. Immediately took it away. Not sure about it for regular use *grins*

March 6, 2007. Depression, Doctors, Medicines, Pain. Leave a comment.

How did it come to this?

Here I am, uninsured, 400 pounds. I can barely do anything because of my chronic pain, I feel guilty as hell because I rely on my husband to help me with menial tasks. I am in a sticky situation.

It’s a vicious cycle really. Feel Immense Pain > Become depressed > Eat to Soothe Depression/Pain > Gain weight > Feel more Pain/Depression as my weight increases. > Diet to lose weight > Feel Immense Pain.

I am aware that I am not the only person in the world living this cycle. I have come to believe the pain I feel is from my Hyper mobility syndrome. Remember that kid who could bend their fingers in all the wrong ways… that girl who was extremely flexible? Yeah that’s me. But I’ve come to learn that while as a child that was fun and games it can have serious consequences as I get older. My joints are loose and by doing daily activities i constantly injure myself. I am in pain every day from the moment I wake up to the moment I sleep. This disorder is also related to fybromyalgia and chronic fatigue syndrome. This is a disabling condition, and I’m sure with my weight it can’t be good.

Now some of you may criticize me for my weight, and blame my aches and pains on weight or age… I am 23 years old, and I have been hurting like this since i was 14 and it progressively got worse. At the age of 19 I first noticed it while I was being sedentary after sleeping, my hips ached and I was sore and stiff in the morning. This was also when I weighed the least in my life in relation to my height. I weighed 200 pounds after losing 100 pounds. Before age 19 I only hurt while being active, with a stabbing sharp back pain, and of course my feet hurt. Lately my pain has been getting a lot worse, and I feel like dying to escape from the pain and the guilt that I suffer.

My depression has gotten much worse and seems to relate to the pain, the frustration I feel from not being able to work, and provide for my family makes me insane with guilt. Today as I start this blog I am on my last dollar, yes just one left. I have to ask myself how did it come to this? How did I allow my life to go so far downhill? I’m educated and smart. Why do I have to suffer pain and depression? … and why aren’t there any options for me? Why isn’t there any help for someone in a situation beyond control? Why has our government not provided me with assistance? Why wasn’t I able to get personal health insurance for any cost while I had resources?

In addition to the hell I am going through now I am also a survivor of abuse. I say that because I feel I have overcome the emotional pain of being verbally, physically, and sexually abused as a child. The depression I feel now if guilt and regret for not being a whole person, not being able to live my life. The fear of pain is overwhelming.

March 6, 2007. Depression, Fibromyalgia, Hypermobility, Insurance, Obesity, Pain, Poverty, Suicide. 1 comment.