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Frustrated with my health

May 19, 2011 - 4 comments

I don't have a question per say so it seems more appropriate to journal this than to post it in any of the forums.

I am extremely frustrated with my health.  I hope that by writing out some of what I experience, how it affects my life, and how it makes me feel, I'll be able to improve my perspective and strategy going forward.

I've been dealing with chronic illness for a little over four years.  I do not have a well-defined or straight-forward diagnosis.  Though controversial, the best explanation for my illness is that I have chronic Lyme disease and co-infections.  Because of my symptoms, I can also be described by the syndromes of chronic fatigue and fibromyalgia.

I have been treating the LD for about two and a half years, taking combinations of oral antibiotics.  I also take a number of supplements.  Before I start ranting about how awful I still feel, I should make clear that I have improved a great deal as a result of this treatment.  At my low-point, before I was diagnosed, I was 29 years old and only able to work part-time (under very special and forgiving circumstances; I would have been fired in an ordinary situation).  I thought it was inevitable that I would lose all ability to work and care for myself, as I had been gradually declining.  After 10 months of treatment I was able to resume full time work (though it was not easy), and since then I've achieved significant professional successes.

So why am I so frustrated?

I consider myself to be a case of "walking wounded," meaning that I can plod on through the day but I'm carrying a heavy burden along the way.

My symptoms tend to change over time, and I am often not able to assess my situation until sufficient time passes and a pattern emerges.  When I look back at the recent past months, I'm really annoyed with the pattern that I see.  I am going to leave out a lot of details about my daily "baseline" symptoms, but suffice it to say that I have a host of problems from joint pain to neurological issues.  None are disabling in and of themselves and I've largely grown accustomed to them.  Many have gradually improved with LD treatment.  

The pattern in my health that has emerged over the past few months has me concerned in terms of how my energy and stamina wildly fluctuate throughout the day:

I can often sleep through the night and wake up in the AM and often feel somewhat rested.  (Previously in my illness I could only sleep in short shifts and  I would wake up exhausted.)   I rely on coffee to get me going, and religiously drink about 6 cups of it first thing.  I am (unhappily) obese, so after breakfast I go to the gym at least 5 times a week for 45-60 minutes of cardio.  I've never seen someone else my size workout as rigorously as I do, I usually soak through my workout clothes.  Immediately after exercise I often feel pretty good, physically, emotionally, and mentally.  Then back home to shower and go to work.  

I try to work as much as I can as soon as I arrive at my office, as I am at my best in the morning.  On good days I start out strong and get a lot done right away.  Other days it is a struggle.  But either way, I inevitably "crash."  Sometimes it's as early as 10-11 AM, other days I might manage until 2-3.  I get in around 8 AM, so obviously my productive window is short, if not very short.  

When I "crash," it is often a sudden onset feeling of overwhelming fatigue.  Not an afternoon yawn, but an almost instant feeling of heaviness and aching.  My concentration and focus gets blown to smithereens, and my speech slows and I have trouble "keeping up" if others are talking.  I can't sit up straight under my own (admittedly large) weight.  When I go to walk in this state my legs feel like they are in cement and I feel slightly off balance.  Sometimes the widespread muscle pain is so bad that I literally can not tolerate to sit at my desk anymore, and as such I sometimes have no choice but to leave work.  "Sometimes" can range from 1 to 5 business days a week.  (In other words, I sometimes leave early every day of the workweek.)  If I am able to stay until 5 or later at work, I'm often just propping myself up and not being effective in what I do.  No amount of coffee will get me out of my afternoon crash, so while it helps me in the AM it is useless later in the day.

Typically I do not recover from this afternoon crash and continue to feel badly until the next morning.  In the evenings I rest; I can never do anything after work beyond very light errands.

Rarely, I will wake up during the night feeling anxious and unable to get back to sleep.  I'm not sure if that is a symptom or more of an emotional consequence to how worried I get about all of the missed work and productivity I experience.

If I skip my AM workout, I will still experience my afternoon crash.  I have not been able to lose any weight for a long time, so I continue to exercise as much as possible despite the irregularities in my energy level.

This is how I get through the week.  Saturdays are much the same except I only work for a few hours in the morning and don't even attempt longer.  By Sunday I am so run down that it is, out of necessity, a full day of recuperating.  I do not feel up to working or going out on Sundays.

I am a 32 year old female with a type A personality.  Before I got sick I was fiercely competitive and still try to be as much as possible.  I also try to be compassionate and realize that my problems are nothing compare to those of others.  But for me, my inability to have enough energy to get through the day is devastating.  I feel as though I am fighting with one hand tied behind my back, and cringe at how lazy I must appear to others.  My weight problem contributes to this; as I doubt that anyone would suspect that I workout and watch what I eat given my appearance.  So I look like an overweight lazy slob; when inside all I want is to be well enough to apply my abilities to my work.

In addition to my ongoing issues with Lyme and my (more recently acute) problems with energy, I exhibit some other oddities, including: Excessive body hair, esp. on my face/neck.  Odd lesions inside of my mouth that do not hurt or grow/change.  (They appeared years ago, and give the inside of my cheeks an unusual topography.  Several doctors have seen them, none feel they are cancerous, but none can explain what the heck they are.)  As mentioned above, I have a very difficult time losing weight, but it creeps on easily.  I experience an extreme worsening of all of my symptoms and energy problems around my period, witch is regular, if not unusually frequent.  (<25 days in between, sometimes only 21 days per cycle.)  I carry a lot of weight in my face.  My shirt size is several larger than my pant size.  I don't know if any of this is relevant, but since I'm getting frustration off of my chest, I thought I'd throw in these (charming!) details.

I don't know or understand how I have come so far in recovery, and can at times be so active and feeling well, yet still I experience a host of symptoms and a daily energy "crash."  While it is my body that is going through these extremes, my emotions are pulled along and some days I feel a great strain to keep it together mentally.  I don't know what I need to do to move past this stage in my health.

For now, I just shake my fist at the skies and keep going as I can.  I like to think that I will get out of this rut, but needed to gripe about how it feels to be stuck here for now...

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535822 tn?1443976780
by margypops, May 19, 2011
I just came across your journal wonko and I was wondering if you have had your thyroid checked out, recently I went through a very tired period achy etc similar to your description and thought it maybe my thyroid, I had the tests done Free t3 Free  t4 and they told me no it was neg..but apparently there was a virus going around almost flu like with lethergy aching limbs, general mallaise just some thoughts of what maybe going on with you.I hope you feel better soon , that Lyme is enough to cope with ..marg

Avatar universal
by bbxx, May 19, 2011
I just saw this on the side lines, as I am severely bored right now. lol Anyway, I feel so bad for you. I know Lyme is a terrible disease. Medicines may help but they also have side effects, and not just the ones listed. I was wondering about a couple things. First I, too wondered about thyroid. The other thing is PCOS (polycystic ovarian syndrome).
If you are severely overweight I dont think you should push yourself exercising super hard. I am not a doctor, but I would suggest you focus on walking and also drinking a glass of water every few hours and work on lowering  your caloric intake. I can imagine you are depressed going through all you are. Hang in there ok? Message me if you want to talk.

Avatar universal
by illinwithoutacause, May 20, 2011
dear wonko,

i am sending many hugs your way.  heaven knows i can relate to so much of what you have described above.  I truly admire your strength and perseverance in trying to maintain "normalcy" in light of so many health challenges.  i think it's amazing that you are working out and working full time.  even if you aren't losing weight, you are keeping your cardiovascular system healthy which is incredibly important.  the stamina you are building from your workouts is undeniably beneficial.

i know you are very thorough, but have you had your adrenals checked?  i am sending you a link to info re: cushing's syndrome to you under separate cover which may be of interest to you.  i know lyme can wreak havoc on the endocrine system as well, so it may be worth investigating if you haven't already done so.

please take good care.  i am thinking of you and always appreciate the support and knowledge you share with others here on medhelp.

with healing thoughts,

1763947 tn?1334055319
by mojogal, Sep 01, 2011
Dear Wonko,
I can relate to much of what  you are saying and I understand your frustration, because I feel like that too. I was going to ask about thyroid testing too because when this Lyme first started to "wake Up" in me, I had to increase thyroid medicine 3 times. I never had a thyroid problem before, but was heavy while watching my food intake and exercising. I had to go on disability because before this all really started to appear, I was just weak, tired and not feeling well and was very depressed. My counselor/nurse friend who has the illness and counsels people with Lyme (since her office happens to be inside the same huge office of a well known LLMD in VA,,.wanted me to test for Lyme 6 yrs ago. It happens that the doctor she works with does not take insurance and was very expensive I couldn't afford it. Looking back, I wish I had tested because I may not  be in the place I am now. Like you, I am better in the morning but still weak and tons of symptoms that some come and go, and some stay around. Your journal gives me hope, that when I finally move and see my LLMD, there is the hope of feeling better and maybe cured.
Thank you for all your posts and answers to question. I pray for your healing as well as everyone who is on this group.

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