sinisterporpoise

 I don’t know why, but I thought it would be good to look back at the past year and the stages I went through today.  Parts of my journey are ones I would like not to repeat, but they are not things I can take back.  Denial, anger, bargaining, depression and acceptance are part of it, but there are also stages that I went through in how I dealt with my new reality. Some of these mimic the states of grieving, and others do not. For me the stages were confusion, fear, a bit of anger, feeling sorry for myself and coming to the stage where I am now.  Something might lie beyond this stage, but I have yet to discover it.

Confusion set in when the severe cramps in my right thigh started to keep me up at night. I wondered what my body was doing and why it was doing it.  Having no insurance at the time failed to help the issue at all.  Trying to figure out what was happening to me and get some relief from the symptoms dominated my thinking.

Fear set in after the first clinic appointment. I was being asked questions about multiple sclerosis, diabetes, rheumatoid arthritis and several other autoimmune diseases. It seemed odd that they would even be asking me these questions since the pain seemed confined to my thigh. It was at that point fear set in.

The doctor’s assurance that it was a pinched nerve in the hip – miralgia paresthetica – only assured me for a little bit. Eventually the pain spread to other areas of the body and I knew something else was going on. I tried to seek other answers, but got told it was likely a meniscus tear. The doctor didn’t even admit she was wrong after the X-rays she ordered came back.  I wondered if it might be one of those scarier diagnoses the first clinic had mentioned.  At this point, I was still without insurance. Finally, I got insurance coverage back and saw my regular doctor. He said fibromyalgia.

At this point, I went through the anger and feeling sorry for myself stages. While I knew this was the best possible diagnosis for what was happening, it also meant he had let me know that I would likely have chronic pain for the rest of my life.  I was angry. I wanted to lash out at others, and I was wallowing in pity. This was the most difficult stage for me to leave.  I’m not proud of my behavior during this time. The misery I felt was something I wanted to share and spread around. With luck, this phase ended before it caused any permanent damage to some of my relationships

Eventually, I came out of this and realized whether I liked it or not – and I don’t –  that I was going to have to live like this.  The pain might be overwhelming at times, and I’ll have to put up with the depression and mood swings as they come.  And this is where I find myself now.  I’ve even come to the point where I recognize that doctors are not all-wise, all-knowing sages and have come to my own theories about what is wrong with me, even if I don’t think it’s wise to share them with my doctors.  I don’t know if this is another part of the process, where you get more and more pieces of the puzzle until it finally all comes together, or if you’re just waiting for your body to show more positive signs of certain illnesses.

As it stands right now, I’m pretty sure I have some kind of connective tissue disorder, especially since the most persistent pains seem to be just above the elbows and just above the knees. The ankles have decided to join the game more permanently know as well.  The fact is, I don’t know for sure, and I recognize that I could be wrong.

I don’t know what happens after this.

 Note: I still feel like crap today. The cough is getting worse, and it’s only be tampered by me sucking on cough drops all day.  I wonder if this is a result of the fluid-filled cysts caused by my Hashimoto’s Disease or just seasonal allergies.  Not that it matters either way. Coughing excessively is exhausting and it hurts after a while, with or without fibromyalgia.

 I have encountered many treatment and diet suggestions that purportedly help with my condition.  Usually people make these out of a place of concern. I will listen to them patiently. If I think the suggestion has merit, I may act upon it. If I do not have information, it means I will research it first.  Failure to act immediately is not a judgment against someone trying to give me additional information. I am only exercising skepticism and trying to avoid the many snake oil scams that target people with certain conditions. If a suggestion has merit, I will do my own research. I may even try it, provided that the information does not contradict what I already know. Anyone who gives me this information should have some faith that I will reach out to them if I want their help managing my medical conditions.

Such advice often extends to dietary issues. People often latch on to the latest fad because they think it will improve their health.  Gluten-free mania and the paleo diet are the best examples of this at the moment.  Despite what some alternative health practitioners believe, removing gluten from the diet does not benefit fibromyalgia patients unless they also have celiac disease.  This is also true for almost all autoimmune diseases, with one obvious exception. (I know there are a few other conditions that may require a person to cut out gluten, but I do not know what they are off-hand.)  Until leaky gut has more scientific evidence behind it, should such a thing ever occur, I will remain skeptical.  Believers put forth plausible-sounding theories, but I have not seen any research coming from academic sources that proves the existence of the condition.

People who have fibromyalgia and/or autoimmune conditions – other than celicac disease again – who have tried these methods and found that they work should not give them up.  Such patients may experience the placebo effect or the nocebo effect. They may even have undiagnosed wheat allergies or celiac disease. I will not question their stories about how one of these diets worked for them as long as they do not insist that the same diet will work for me. (I’ve tried it. It didn’t do much. Besides, I had reasons *for* trying a gluten-free diet, reasons which include a doctor who just wrote my symptoms off as fibromyalgia before he ruled other conditions out.)

Politely thanking a concerned party and turning down their suggestion is not a rejection of the person. It only indicates that I have decided not to follow that person’s suggestion. I am likely to dismiss ideas that come across as pseudoscience. If the idea sounds plausible to me, I will ask for more information. Any person who has made it this far should avoid using phrases like “Google It.” The third party brought this information to me. By engaging in a conversation, I have already made the reasonable assumption that  they want me to ask about their proposed solution.

I understand that the people closest to me and compassionate people worry about my health, particularly if they see me on high-pain days. Please make the assumption that I really am doing the best I can with the resources I have available.  Unlike the concerned third party, I have to live in this body every day. This body is better than some and worse than others. Assume that I know what works for me and what does not.  Do this  and  I will do my best to return the favor.