Chronic Illness

[AmateisGal]

Curious how many of us here at the Lounge deal with chronic illnesses. I have rheumatoid arthritis and migraines, and my neurologist thinks I have fibromyalgia, too. (I really hope not). I'm going to see a new rheumatologist this week for another opinion. I hope I don't have to go on biologics drugs because they're not that great for your body.

I know back in the Era if you had rheumatoid arthritis, you basically ended up crippled. I'm thankful that we have drugs to treat it now, though it's definitely not a cure.

If you do have a chronic illness, how do you cope with it? I think my biggest issue is having to deal with the constant turmoil of never knowing how I'll feel when I wake up. I can go for days at a time where I feel pretty good (I am never 100% or even 90%) and then I'll get hit by a flare and end up in bed for days. I'm thankful that I have a job where I can work from home if necessary.

 

[Harp]

Migraines and Post Traumatic Stress Disorder from the Army.
Excedrin for the headaches and a never ending chess duel with my conscience. I was fortunately more often right and I know I saved lives, but the doubts remain fixed.

 

[LizzieMaine]

Migraines since I was ten years old -- the debilitating kind where you huddle in a fetal position on the bathroom floor and wish you could die to make it stop. Excedrin works for me too, but only if I take it early enough on in the process to abort the headache. If I wait too long, I can't keep anything down, including medication.

The main thing I do is try to get enough sleep -- lack of sleep is the major trigger for me, and when I hit patches of insomnia, I take sleeping pills to try and knock it off. Sometimes these work, and sometimes they don't. I don't eat anything with sugar or caffeine in it after 5pm if I can help it, and I don't drink alcohol other than maybe a beer once or twice a year. But when, despite my precautions, I get hit, I go in a pitch dark room with an ice pack and press it very hard against the side of my head.

I've explained to the people I work with what can happen to me, and they know what to do if I'm hit with an attack. I passed out from pain once on the floor of the projection booth, and they were able to get me home and put to bed safely,

 

[AmateisGal]

Migraines and Post Traumatic Stress Disorder from the Army.
Excedrin for the headaches and a never ending chess duel with my conscience. I was fortunately more often right and I know I saved lives, but the doubts remain fixed.

You most certainly did save lives. I'm sorry you're dealing with PTSD. My ex had it (though he denied it) and I know how brutal it can be.

Migraines since I was ten years old -- the debilitating kind where you huddle in a fetal position on the bathroom floor and wish you could die to make it stop. Excedrin works for me too, but only if I take it early enough on in the process to abort the headache. If I wait too long, I can't keep anything down, including medication.

The main thing I do is try to get enough sleep -- lack of sleep is the major trigger for me, and when I hit patches of insomnia, I take sleeping pills to try and knock it off. Sometimes these work, and sometimes they don't. I don't eat anything with sugar or caffeine in it after 5pm if I can help it, and I don't drink alcohol other than maybe a beer once or twice a year. But when, despite my precautions, I get hit, I go in a pitch dark room with an ice pack and press it very hard against the side of my head.

I've explained to the people I work with what can happen to me, and they know what to do if I'm hit with an attack. I passed out from pain once on the floor of the projection booth, and they were able to get me home and put to bed safely,

Wow, Lizzie. Those sound absolutely hideous. I've had some migraines where I've been very, very close to hauling myself to the ER for a shot because the pain was so bad, but I've never passed out with them. I've had them since high school and most over-the-counter meds no longer touch them. I've been to two neurologists, several chiropractors, physical therapy, acupuncturists, massage therapists, and pain docs and no one can get them to stop. My most recent pain doc tried a therapy on me and it didn't work - so he "fired" me as a patient and said he could no longer do anything for me. Talk about frustrating!

 

[LizzieMaine]

The worst part of it is the visual disturbances -- I've had a few so bad that I was temporary blind, which is extremely unsettling the first time it happens. It doesn't happen very often, but when it does it's just another upsetting aspect of it.

The nausea is the hardest thing to take. Exposure to bright sunlight can be a trigger for me, especially if I'm outside for hours at a time, and when I get a sunlight-triggered migraine nausea always comes along with it. A couple of years ago, three of the kids and I went out to the county fair, and it was a very sunny August day, and I didn't have a hat on, just a headrag. Six hours in the sun, coupled with cheap carnival food, and a migraine hit me just as I was in the process of driving us home. I was driving the Plodge, and none of the kids knew how to drive a standard, so I had to keep going until about a mile from home I lost control. I got the car stopped, but I ended up laying in a ditch at the side of the road for a while until we could get moving again.

Doctors haven't been much help to me. I've had prescription stuff before -- I was on ergotamine in high school -- but it didn't really help any more than the Excedrin does. The doctor usually says "well, identify your triggers," which is sort of like the old Smith and Dale routine: "Doctor, it hurts when I do this!" "Well don't do that no more!"

 

[AmateisGal]

Wow, Lizzie. I can't even imagine...I'm so sorry you have to deal with that.

I guess there is a new drug coming out next year, and my neurologist wants me to try it. I have a headache constantly - I wake up with it and I go to bed with it. I've learned to pretty much live with them.

 

[Fading Fast]

My life could almost be divided into before and after Imatrex (sumatriptan) came out as a migraine medicine. Before, when a migraine hit, my day was blown apart as the visual distortion (literal waves blocking out my ability to see), crushing pain and nausea made working all but impossible (and for reference, once Imatrex came along and mitigated my migraines, I did not have one sick day for the next 15 years as I just powered through the basic I-am-sick stuff). One of my greatest fears in life is that, one day, sumatriptan will no longer be effective for me as a small percentage of users do have that experience over time.

 

[tonyb]

I'll spare you the laundry list, as it's sufficient to say that in our household we live with diseases that are all but certain to prove fatal sooner of later (we hope for later but are mindful that it could be sooner and take the steps we can against that) and seriously disabling, irreversible conditions.

I'm on five prescription meds to treat my various chronic conditions. The dewy-eyed bride is in pretty much constant battle with insurers to cover the "durable medical equipment" she needs to conduct her daily life.

But you get used to it. As I've noted before, the challenges will be there whether we cry about them or not. Not is usually better, although I don't fault a person for occasionally letting frustration bubble to the surface.

I'm thankful we aren't dealing with an unusual degree of pain. I know many people less fortunate in that regard, whose choice is between being more or less physically comfortable but in an opiate-induced fog or in miserable pain but kind of clearheaded.

 

[Trenchfriend]

@AmateisGal
Your neurologist thinks about fibromyalgia??

Do you know about your vitamine D-level, to be exactly: https://en.wikipedia.org/wiki/Calcifediol ?

 

[scottyrocks]

My wife deals with the types of migraines Lizzie describes.

Me? Type I diabetes for 52 years. Early open heart surgery, in part because of the diabetes, at 56, two years ago this month.

I don't make a big deal about either one. Most often people don't even know I have these issues, except that I've slowed down a bit, but folks just take that as normal progression of age.

The problems I'm having now is that because of my recent mortality check I have been trying to get a better handle on the blood sugars and more than occasionally go too low, so my crew needs to know what to look for when that happens because it makes you stupid and less able to fix it yourself - sort of a neural short circuit.

What does cause me more obvious (to me) problems are digestive issues - lactose intolerance and a generally irritable bowl. Both can cause all kinds of disturbances, both aural and olfactory, not to mention cramping and general discomfort.

 

[Trenchfriend]

I didn't felt well until the end of june 2016. Short version: I was weak and "rickety" and didn't know why.

Then, I researched myself and started with daily 1.000 IU vitamine D3 and from this point, it got better and better. And in the end of 2016, my body-condition was back on strong 100%, without doing any sports. No myalgia, no aching bones, since them.

In 2017, I changed to daily 2.000 IU vitamin D3 and meanwhile, I know about my vitamine D-level and I got no lack!

But now, I can tell you one thing:
It has NO influence to your mind! Definitely not. It only supports your musculoskeletal-system, but immense!

Don't believe, it could help you on depressive moods/real depressions!

Next point:
Check your level of "Holo-transcobalamine II" (bioactive vitamine B12)!!!!

 

[Trenchfriend]

And another thing, I still can't really believe:

I felt very bad, from the end of summer this year on! Not in the sense of depression, but in the sense of feeling halfway "demented", not beeing able to think and concentrate on a normal level, combined with lack of sleep and partly headache.

In the meantime, I checked the whole vitamine B12-topic, got a saturation-therapy with B complex-injections, without knowing, if they helped, but now, I got really no lack of B12 after the "Holotranscobalamine"-bloodtest. But, B12 doesn't seem to be the reason for my problems.

At the beginning of November, I thought about, what could I do additional, to help myself, finally.

Then it comes to my mind, just to higher my daily intake of fluids and see, what it effects, although, I already orientated myself on daily two litres, all the time.
And THAT was the point! From this day on, I felt so much better and my brain again worked normal on fast 100%. I was finally awake, again!

Nonetheless, I'm taking a vitamine B-complex-supplement, daily, since I did the Holotransccobalamine-test and got the positive result.

 

[scottyrocks]

Yeah, I don't drink enough water, either. And coffee or tea or soda or juice, and especially booze are no substitutions.

I'm lucky if I can get a half liter of H20 down per day.

 

[AmateisGal]

@AmateisGal
Your neurologist thinks about fibromyalgia??

Do you know about your vitamine D-level, to be exactly: https://en.wikipedia.org/wiki/Calcifediol ?

I take 4000 IU of Vitamin D a day.

My neurologist is pretty great, but I don't know that he has properly diagnosed with fibromyalgia when the other two rheumatologists have not had that diagnosis. Thus, that's why I'm going to see a new rheumy tomorrow.

I drink water constantly. I'm not sure when I started it - probably when I started working full time after I got my graduate degree 10+ years ago. I always have a water bottle nearby.

 

[AmateisGal]

My life could almost be divided into before and after Imatrex (sumatriptan) came out as a migraine medicine. Before, when a migraine hit, my day was blown apart as the visual distortion (literal waves blocking out my ability to see), crushing pain and nausea made working all but impossible (and for reference, once Imatrex came along and mitigated my migraines, I did not have one sick day for the next 15 years as I just powered through the basic I-am-sick stuff). One of my greatest fears in life is that, one day, sumatriptan will no longer be effective for me as a small percentage of users do have that experience over time.

I wish Imatrex would work for me. I was finally diagnosed with cervicogenic headaches (the cause of the headaches is in the neck) which I knew all along but no doctor would listen to me. The treatment for them is to get injections in your neck. Well, they didn't work for me. I was SO disappointed. Thus, I have become a medical mystery. I've been chasing after a treatment for 25 years.

 

[Fading Fast]

I wish Imatrex would work for me. I was finally diagnosed with cervicogenic headaches (the cause of the headaches is in the neck) which I knew all along but no doctor would listen to me. The treatment for them is to get injections in your neck. Well, they didn't work for me. I was SO disappointed. Thus, I have become a medical mystery. I've been chasing after a treatment for 25 years.

I'm sorry, that is brutal. Like all of us, I have other nagging issues - Tinnitus (you never really have complete silence), Raynaud's Phenomenon (my hands and feet are stone cold for 7 or so months of the year, I can thank my paternal grandmother for this one) and an upper back / neck that "goes out" with not much provocation - but the migraines, until Imatrex, were the worse as they shut me down flat with almost no warning.

And like all of us, I just soldier on as (1) no one wants to hear me complain and (2) it's healthier for me to treat all this stuff as "no big deal" as I want to be positive and feel normal - but what you and others have is so much worse than what I deal with all I can say is you have my sympathy and sincere wish that a good treatment is about to come to market.

 

[scottyrocks]

Tinnitus (you never really have complete silence),

Omg, how could I forget the tinnitus - I guess I'm just so used to it.

It's one of those noises I can't recreate in any way, shape or form to have anyone hear how it sounds - sort of a cross between a screech, static, and something else. It is always there, and the quieter my surrounds are the more I hear it. Thank goodness it doesn't stop me from sleeping.

And I know how I got it. Thirty years of motorcycling and 15 years of drumming will do it to you.

 

[Fading Fast]

Omg, how could I forget the tinnitus - I guess I'm just so used to it.

It's one of those noises I can't recreate in any way, shape or form to have anyone hear how it sounds - sort of a cross between a screech, static, and something else. It is always there, and the quieter my surrounds are the more I hear it. Thank goodness it doesn't stop me from sleeping.

And I know how I got it. Thirty years of motorcycling and 15 years of drumming will do it to you.

Your description of the sound is spot on. I remember a friend who has it describing it to me before I had it and thinking, there is no way on earth I could live with that - but like almost everything, you find a way.

That said, I'd pay good money just for a few days rest from it.

 

[scotrace]

Well, all those ailments, my dear, point to relief via weed.
Or so I've heard. Sharing for a friend.

 

[tonyb]

Well, all those ailments, my dear, point to relief via weed.
Or so I've heard. Sharing for a friend.

Little doubt in my mind that certain compounds derived from cannabis are effective against certain ailments. Still, there are true devotees of the herb who would have us believe that it is a panacea sent straight from, um, On High. The outrageous claims I've heard are that cannabis illegality was a conspiracy perpetrated by Big Pharma to keep this god-given cure-all off the market. You'd have to be more than stoned to take that on faith.

I'm hearing that CBD is effective against pain, and that it isn't psychoactive. How true is that? I dunno. But it sounds hopeful.