Am I the only one, who is ALWAYS unwell?

Right now, I’m being slowed down by my Graves Disease and I feel like I’m sick all the time.. It’s been months now and I’m really getting impatient. Pains everywhere, nausea, shaking. I’m normally very healthy and active, so this is really getting on my nerves. (pun not intended.)

I couldn’t live like this all the time. I’d go to doctors (am seeing a specialist this coming Tuesday), take therapy, use my will power, until I did everything to feel better.

If it makes you feel any better to read my complaints so you know you’re not alone, read on. Otherwise, skip this.

Prior to 40 years old, I was never sick and never had any physical issues. A few months after my 40th birthday, however, I was struck with the inability to sleep due to central sleep apnea. This is the kind of apnea where your brain forgets to tell you to breathe. So, as soon as I’d start to drift off, I’d realize that I hadn’t been breathing and I would jump up, oxygen deprived, and in full fight or flight mode. Sleep studies would reveal that I was not breathing for 60+ seconds, causing some messed-up sh*t. Regarding treatment, I’ll make a very long story shorter – this apnea is difficult to treat, unlike obstructive sleep apnea, and I burned through $6000 of equipment (you can’t even go straight CPAP) and masks with still no relief. I spent much of my time going through more and more tests in Boston (brain scans, etc) throughout the year, still unable to sleep more than a couple of minutes here and there – and completely without any deep sleep cycles.

Eight months after the apnea appeared, I sat down on a chair while my 4-year-old son was hanging off of me a bit, and my back felt like someone stabbed me. Since then (8 months ago), I have been unable to lay down on a bed because there is only one angle that I can tolerate my back to be. I have to “sleep” sitting up on the couch, at a very specific angle, using all kinds of pillows.

I have done months of PT and had 2 rounds of spinal injections, but still I cannot lay down and I am in pain a majority of the day. Sitting up has resulted (or contributed to) a problem with my neck, so many nights I am even unable to lay down in any positions, and must sit up with heat around my neck.

Note: I cannot take pain meds that are normally prescribed for back pain because they depress the respiratory system and can severely exacerbate the central sleep apnea (in other words, kill me).

So, while awaiting my appointment with one of the best spine specialists in Boston, I have been occasionally laying down to see if the pain has improved at all. It hasn’t. But what is more troubling is that for awhile now, when I lay down, within 2 seconds, the entire room is spinning. So, I saw an ENT and she thought I might have BPPV (a type of positional vertigo caused by crystals in the inner ear that must be repositioned using a maneuver). Well, she tried the Epley maneuver, but expressed concern that it may not be BPPV.

After 3 days of increased dizziness and no relief from the Epley, I called her back, and she told me that she was “afraid of that”. She immediately booked me for balance testing at a finer facility, and mentioned that it could be something much more serious “with [my] brain”. I cannot tilt my head to the side or turn quickly without having the serious spins.

Anyway, I’m not sure if that helps, but there it is. There are plenty of people more sick than I am or you are, but that doesn’t diminish how we experience the pain. It’s real, and it sucks. I just continue to remind myself that every day for the past 1.5 years since I last slept has been a challenge I didn’t think I could pull off. Every morning, I “wake up” and ask myself how I will be able to pull off what I need to do, and it seems an impossibility. Yet, every evening after I get the kids to sleep, I sit and rest and acknowledge that I did pull it off. It helps me to realize that I’m stronger than I believe that I am.

I hope you find some relief and soon. But in the meantime, you may be able to take this opportunity to learn something about yourself – including your resilience and your ability to grow from even the most challenging of situations.

I was very healthy despite being overweight until about 2 years ago. I have developed an autoimmune condition that is being called Rheumatoid Arthritis for now, although my symptoms aren’t a perfect fit. The medication I take helps a great deal, and fortunately doesn’t seem to have side-effects that some people get. But still there is always something that hurts, and while I have a high tolerance for pain, it does wear you down, and leads to fatigue and brain fog. Then earlier this week, I wound up in the ER with a racing heartbeat and abnormal EKG. Took several hours and a dose of nitroglycerin to calm it down, and they never found a cause. I’m overweight, but that’s my only risk-factor – normal blood pressure, normal cholesterol, etc. so it’s a mystery. ~Yay~

As far as your condition goes, you didn’t indicate whether you’ve consulted physicians about this. If you have, what specialities, and what tests have they done? They should rule out Epstein-Barr and Lyme; they should check your thyroid and also test for inflammatory markers, such as ESR and RF and for celiac disease. These basic blood tests can be done by your family physician as a first step to help determine which specialist you should consult next.

‘Leaky gut’ is believed to be related to autoimmune disorders, so you might want to try dietary changes to see if it helps – like removing processed foods and especially sugar and sweeteners and gluten to see if you feel better. A coworker of mine went paleo and gluten-free and said she felt much better, she has reintroduced gluten in small amounts and it hasn’t made her feel worse, so she has joined those who say that it isn’t always the removal of gluten that makes folks feel better, it’s eating better quality foods, in general. On the other hand, my mother has true celiac disease that was diagnosed after all other possibilities had been ruled out, so they biopsied her intestine and made the discovery – this was before they had developed the blood test and before anyone had heard of gluten. Now it’s much easier to avoid gluten than it was when she was first diagnosed.

I hope you get some answers soon!

@hominid: Sorry to learn of your vertigo on top of the other crap you’ve been dealing with! If you have any questions for the Audiologist-in-residence, do not hesitate to contact me.

As for your back pain, I have Stressless recliners that are very supportive and adjustable – even the head angle can be changed. Perhaps you’d be able to get some rest in something like that, since couches tend to not be very supportive.

@hominid and what amazes me ( and I say it in admiration) is that you still manage a family life and whatever other duties you have!!!!!!! For me it’s a case of ” oh no the new day has come in, I wish it wouldn’t ever again”, yet you and so many others get through probably without complaining! BRAVO.

@hearkat I do have an underactive thyroid (not dramatically so, but it does drag) but I doubt that is SO responsible for all this woe!

No. Have you tried a change in diet? For example cut out milk and gluten.

You know a change in diet may help. People’s stomachs aren’t designed for breaking down the gluten that is engineered for mass production.

Eating right=getting the mind right

You are not alone. It can be a serious struggle to deal with chronic pain/health issues, and often leads to (or contributes to) depression. Make sure you’re taking care of your mental well-being as well as your physical ailments! It can make a world of difference.

I am healthy most of the time. I avoid exposure to people and public places more than most though, and I wash my hands alot…

I would suggest ZEPHRYA that you take a close look at your diet and try eliminating things that you feel are suspect. Even things that seem healthy can be very risky for you now.

Strawberries for instance, unless organically grown, are very heavily treated with pesticides, over 16 different pesticides. The farm workers essentially have to wear hazmat suits to apply them.

Also, virtually all plastics used in cooking or food preparation are suspect. Read these articles for helpful guidance:

http://shine.yahoo.com/author-blog-posts/power-healthy-eating-woman-healed-herself-healthy-diet-182700985.html

http://shine.yahoo.com/healthy-living/12-household-toxins-banish-home-164100342.html

http://www.rodalenews.com/bpa-free-plastics?cm_mmc=Yahoo_Blog-12%20Household%20Toxins%20You%20Should%20Banish%20From%20Your%20HomeBlog_-Why%20BPA%20Free%20Plastics%20Arent%20Safe

Here’s that third link again on non-BPA plastics hazzards:

http://www.rodalenews.com/bpa-free-plastics?

I am plagued by sinus/allergy issues that cause me a lot of fatigue, body aches, bloody noses and in general I feel like shit more often than not the last few years.
My immune system is overtaxed trying to fight off all the irritants and it makes me feel really crappy, almost flu like symptoms, headaches, body/muscle aches. It is really debilitating a lot of the time.
It has been especially bad this last few days again, and yes, it sucks to have issues that are not considered to really be a specific illness/disease but really effect your quality of life.

I swear I am starting to wonder if one can claim disability for allergy/sinus issues.
Nothing helps, nothing. I give up.
I believe it is environmental pollution and dust/molds in the atmosphere, wood smoke kills me anymore, if my neighbors have their woodstove/fireplace going or anyone is burning brush piles I am instantly sick. It sucks to put it mildly. I am about ready to move to fucking Antarctica and live in an ice cave. lol

The sinus issues could in part be related to indoor air pollutants. Everything from formaldehyde fumes from treated wood, carpeting and textiles, to “flame retardent” foam in furniture known to release toxins into the air.

Do you live in a large city? Air pollution from industry could also be affecting you.

Have you heard of chronic fatigue syndrome?

http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

You are not alone.
I agree with those above that you might be looking at something autoimmune, you might benefit from asking your doctor if it could be in your best interest to see a rheumatologist or to rule out other common things like thyroid dysfunction or vitamin D deficiency.

I figured I’d reply within the post to a PM someone sent asking how much I think being overweight is a part of the problem.

I have been progressively more overweight in adulthood, but always very healthy. I eat less and less processed food – but I eat a lot and I’ve become less active, especially since developing pain. I certainly understand that my body has to work harder to breathe and pump blood, as well as to move the extra weight around. I honestly don’t know much about what metabolic changes result from being overweight, so I can’t address that. Obesity is a risk factor for most conditions, bit there’s always that ‘chicken-or-egg’ debate – is it the obesity itself, or the things that have led to obesity that also contribute to the other conditions?

All I can say about myself is when I wake up I have some aches and pains in my arms and legs. Then in my legs all day long.
No allergies, never a headache, never a cold or flu, no backaches. Just the legs. so I consider myself lucky. I keep pills down to as few as possible; I think they’re poison. For instance, I took one Aleve when I got up today. I take fish oil and turmeric.

@NanoNano Yep, they are related to ALL pollutants. I have changed my diet, used every nasal spray, medication known, had a waters view to check for polyps, blockages etc. It is just my cross to bear, misery it is. haha

@hearkat: I guess a good question to add to your recent comment would be “how overweight are you?” There’s a difference between 20 lbs overweight and 150 lbs overweight. I find that sometimes, people’s impressions of their own weight is that they’re not that heavy, when in reality, they really are bigger than they think of themselves.

Before losing a significant amount of weight (from having weight loss surgery), it was hard for me to get up off a chair, get out of a car, and I would not consider walking up a set of stairs unless I had no choice.

Of course there’s a difference between 20 and 150 excess pounds, @jca; and my comment was more in reference to being ‘significantly’ overweight (the amount of pounds of which will vary, depending on how tall a person is and how dense their skeletal and muscle mass are).

I have a pretty good awareness of how obese I am, but even though I am more than 100 lbs. overweight and over 40% fat, I can get in and out of a car and climb up to 4 flights of stairs in a parking garage before I start panting—so the amount of excess weight isn’t the only factor. Even amongst obese people as with lower weight folks, there are varying levels of fitness. I still have normal bloodwork results, and I know many skinnier people who have high cholesterol, blood pressure problems and blood sugar irregularities.

@hearkat: There are definitely thin people in the world who have high cholesterol, diabetes, high blood pressure, cardiac issues, joint issues and other problems. However, statistics show that statistically, these illnesses are more prevalent in the obese. A body carrying 300 lbs and dealing with a major influx of fats, salt and sugars works way harder than a body carrying 150 lbs and a more healthy diet.

I knew, when I was at my heaviest, that although I had none of those medical conditions, it was really only a matter of time.

This is likely of little help to @ZEPHYRA. The best way to improve health is to reduce stress, which is something impossible in these trying economic and political times.

hearkat:

I am 5 foot 10–11 and weigh 200 pounds currently. I am about 20 pounds overweight. That might not seem like much to some people, but in the BMI chart I am classified as clinically obese.

So it doesn’t take much to be classified (by NIH standards mind you) as obese.

I am healthy, but even at my weight I have stresses, aches and pains I normally wouldn’t have. So I think this might be a contributing factor to ZEPHYRA’s health issue, but not the primary cause…

@NanoNano – I agree that the common methods of measuring BMI, fitness, and ‘obesity’ are lacking. If your extra 20 lbs were muscle instead of fatty tissue, you’d still be too high according to the charts, but chances are that you’d have fewer aches and stress points.

try to control eating habits ,it will help you a lot to love life