The Unknown Fire

If you have been chronically ill or have Autoimmune illnesses you will more than likely have a slew of symptoms and challenges that have been undiagnosed for years and May remain that way.

No matter how much we search, or no matter how many doctors we speak to, we often have to face the fact that we may never find answers or relief. It’s one of the hardest facts to accept!

So many of us have faced some very painful and difficult symptoms that we have no answers for and we may have even began to doubt our own sanity. Why are answers so important? Because originally I thought that finding a name would help find relief. But after all these years I have found that answers to don’t come easy and more often than not do not come at all.

Many of my fellow Autoimmunes have been to many specialists in search of answers and have been frustrated and left feeling crushed. It’s the worst torture of all as we have to endure the pain of searching and the pain of being left without any answers for all our efforts and energy. A tortuous limbo.

Perhaps because there is so much unknown to specialists and so much is still left to learn about autoimmune diseases? Even diagnosis is a long and tedious process taking many years and many doctors. Read the literature and you will see the complex and unreliable testing standards for each of the autoimmune diseases and there are still so many contradictory tests results leaving many undiagnosed and suffering. It can also mean that many will suffer years of pain and advanced disease progression until finally some answers begin to filter through.

However even once a diagnosis can be reached it is far from the end of struggle. Many of the current treatments do not address or remedy all the symptoms and struggles we face. Many doctors do not even understand the struggles we face!

Many years ago I began experiencing burning and painfully red skin on my face, ears and neck. I never knew what it was or why it happened. It was episodic, unpredictable and very, very painful. I felt foolish so I suffered many years alone. When I told various doctors they simply stared at me in disbelief. Since then I have asked other sufferers if they had experienced similar symptoms and the feedback has been extensive and confusing. I have been told that I may have Lupus, steroid reactions and even blood pressure problems. Many different opinions but no conclusive answers. Nothing conclusive. Today I spoke to a new Rheumatologist and she offered yet another diagnosis. She seemed quite confident as she announced that I have Erythromelalgia. I was dumbfounded. Is this the answer? I really don’t know and I believe I may never know. I am learning how to make a peace now with it but it’s hard.

I recall the stories of many fellow chronic fighters that have spoken to dozens of doctors and have suffered for so many years only to still have no answers for all they have gone through. It’s heartbreaking. Without answers it also means that many still are denied medications that might help relieve these pain. I feel so deeply for their plight. For all of our plights.

Chronic struggles are so many and can affect so many different parts of our bodies in many painful ways that we may never know all that is happening and why, perhaps future generations may know more and I truly hope they do, however for those of us struggling now we may have to take comfort in each other’s understanding and support. Confiding in each other means we don’t have to feel entirely lost and abandoned. Finding each other means we that, even without answers, we don’t have to feel lost and alone.

It is a long road to accepting that many of the things we endure may have no answers or diagnosis and that we are often at the mercy of a painfully unsympathetic and I knowledgeable system.

I have had to change my own expectations on many things. I have had to accept the things that remain undiagnosed and incurable and focus on making room for them in the life I have. No matter how painful they are.

This burning condition I mentioned before has plagued me for many years and it interferes with so much, even preventing me from sleep as my face can not touch a pillow as I can not stop the red, burning and heat emitted from my skin. I can’t be touched until it settles. Whenever that may be. This is just one of the several challenging symptoms that I have and I have had to learn to live with. I could continue to search more and more doctors or I can simply add the symptoms to the long list of challenges and try to learn how to find some peace and quality of life despite them all.

I choose the later.

Even if diagnosed the reality is that autoimmune diseases and many other peripheral pains can not be cured and are simply managed as well as possible. The reality is that many ancillary symptoms can rarely be contained and medications have greatly varying results. As my burning increases and other difficulties deepen I will always be focused on living a life with some happiness and with love. I believe it’s what we prioritize as survivors that defines our daily struggles and what we try to achieve within our struggles will be far more important.

I have reasoned that if these pains and struggles haven’t taken me then I must use whatever I can to endure them and make room for them all in every day life. I don’t really have a choice.

If this latest diagnosis is correct than the damaged nerves and autonomic dysfunction at the heart of the burning can not be undone. I have to learn to cope and stand strong; No matter what. It must be added to the long list of daily battles and struggles that very few people will ever comprehend; Not even close.

I also believe that by becoming a community we can be so much stronger together. Our pains (physical and emotional) do not have to go unheard or unsupported and within the chronic community we can hold more knowledge, help and acceptance than many medical professions can offer.

Everything I write and everything I do is in the hope of making this community a stronger place and better understood by those who have not had to face the many challenges, pains and uncertainty that many of us do.

Gentle hugs,

Trish.

3 thoughts on “The Unknown Fire

  1. I was going to say Shingles. I had a nasty case of Shingles and it hurt like hell right along my hair line in back and around my ears. I was 53 and I asked the doctor. No she said, it might have been a fiery red patch of stuff along your hairline and ears that hurts and itches. One has to love the crazy things that happen when you have autoimmune issues.

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    1. Oh yes. We have to try and make a peace that we may never understand or have answers.

      For me that was the hardest part as I have always been a searcher and a studier. I thought my learning would help me through anything.

      Like

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