Post Published on June 22, 2012.
Last Updated on April 28, 2016 by davemackey.
So, I haven’t really talked on this blog about my ongoing health issues, but I wanted to post here for all who are aware and all who care to be aware of the ongoing saga of my health dilemma. Hopefully this will answer some of the frequent questions I receive. 🙂 I always feel a bit embarrassed talking about my health in real-life – b/c I wonder, “who really wants to stand here and listen to my aches and woes?” But, obviously, you must, since you are actually reading this blog post…
The Current Situation
Around three weeks ago I noticed that an unusual leg pain/weariness I had been suffering from when / following exercising was becoming persistent – with or without exercise. As the pain and weariness progressed I phoned my doctor to make an appointment and, using normal routine procedure, I was scheduled a few weeks out. A few days later I was calling back asking to be seen asap as the pain had become intolerable. They squeezed me in. The pain continued to get worse and continue to be quite awful if I miss a dose of pain medications. The biggest problem for me is the noise the pain creates in my head – I have lost my ability to concentrate and am unable to complete complex tasks…a real problem for someone who is a systems administrator / application developer. At some points I’m unable to write emails or blog posts – the effort seems too overwhelming and exhausting.
The Current Regimen
I am taking Tramadol 50 mg every 4 hours to keep the pain at bay, but it is still constant and thudding. When I miss a dose (overnight) I am in agony for several hours after taking the next dose. I am taking 750 mg of Nabumetone (an NSAID – Non-Steroid Anti-Inflammatory Drug) twice daily. I had been taking Klonopin (1 mg) to help me sleep, but it made me sleep through the entire night and the pain from not taking the Tramadol for eight hours was too severe upon waking, so I’ve discontinued the Klonopin so I can awake at 4 am to take the Tramadol and (hopefully) avoid the hours of intense pain in the morning.
I requested to be placed on a steroid as well – as I have had this issue in the past and it was helped by steroids. The doctor has agreed and so last evening I began Prednisone, beginning with three 10 mg tablet and tapering down over the upcoming days.
In addition to this I have been using a number of Ben-Gay and Icy Hot products to soothe my joints. My knees and calves have been especially afflicted and my back at times enters a high amount of pain (though at other times feels entirely fine).
What Is It?
I haven’t been given a definite diagnosis in the words, “Your diagnosis is x.” But the working assumption based on symptoms and blood work is an auto-immune disease. Which auto-immune disease in particular is up for discussion. For those not familiar with auto-immune diseases, it is when some of the cells in your body (e.g. the soldier/police white blood cells) don’t recognize other cells in your body as being you and attack and kill them. The immediate effects of this are inflammation in various parts of the body – for me, it is currently centralized in my knees and calves. The longer term ramifications are permanent damage to nerves, organs, and etc.
How Do They Treat It?
I’m not entirely clear on this. It seems that auto-immune can be pretty serious, but that a lot of people also live with it successfully and some go into full remission. From what I’m reading it seems that a lot of auto-immune disorders in the past where sort of hopeless cases, but that with more recent medical discoveries things are getting more optimistic and new treatments have or are being developed. I suppose we’ll know more about treatment as we focus in on the particular auto-immune disorder.
What Are Your Symptoms
- Joint Pain – This is most severe in the knees, but there is also stiffness and pain in the wrists and ankles.
- Dry Eyes – Even with significantly reduced computer usage my eyes constantly feel dry and tired. Sometimes they get blurry and I have to make an intentional effort to focus them…Sometimes they just fail to focus and things remain blurry (this is in detail work, not in everything). I am using saline solution eye drops, but this does not appear to make a different.
- Reynaud’s Phenomenon – When it is excessively cold out my body holds the blood back from my hands and feet, they become extremely cold and numb.
- Brain Fog – Reduced ability to think analytically and logically. Reduced ability to focus for any period of time.
- Skin Rash – Appearing very similar to poison ivy it is most severe on my left ankle but can be seen if looked for closely on both arms and my right leg. Hopefully the NSAIDs are holding its spread at bay.
- Chronic Fatigue – I feel tired almost all the time, but not necessarily sleepy.
- Urinary Distress – I seem to have a neurological problem which makes me feel the urge to urinate frequently when there is no actual need to do so.
- Tingling / Jitteryness – My legs feel both exhausted and painful and tingling/jittery – as if they want to run a marathon.
- Restless Leg Syndrome – Kicking and involuntary movement of my legs in sleep.
- Insomnia – The inability to sleep even when sleepy.
In addition, while not a symptom, my mom suffered/suffers from Multiple Sclerosis – also an auto-immune disease.
In addition to the above medications I take other medications for other conditions. Prozac (Fluoxetine) 60 mg daily for Obsessive Compulsive Disorder (OCD) and Depression. Abilify 5 mg daily to help the efficiency of the Prozac in treating the Depression. Adderall XR 20 mg daily for Attention Deficit Disorder (ADD).
Additionally, I take nutritional supplements – One A Day Men’s Health Formula (Vitamin A, C, D3, E, K, B1, B2, B6, Folic Acid, B12, Biotin, Pantothenic Acid, Calcium, Magnesium, Zinc, Selenium, Copper, Manganese, Chromium, Lycopene), NOW Magnesium Citrate, Solgar Folic Acid, Coromega3+D, and GNC Liquid Vitamin B-12.
I am optimistic. I have known for years something was wrong with me, but could never discover what. While I am not enjoying the severe pain and aches and loss of ability, I am glad to finally know something and to be heading towards a fuller knowledge. I did not suddenly acquire this condition and I have lived with it thus far – it is just a severe outbreak, and I’ve had one before. I will go on living afterwards and in conjunction with the doctors will find ways to manage and treat this issue.
I have to pick up my lab results from my PCP (primary care physician). I have an appointment on Monday with a neurologist. In a few weeks an appointment with a rheumatologist. After that an appointment with an immunologist. I am also see a doctor in functional medicine – I saw him a week ago and will see him again in a week. I’m reading everything I can find of value on the topic and hoping to return to work very soon with the ability to actually be productive. I hope to preach this Sunday.
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