Kaliska
Member
- Joined
- Oct 12, 2016
- Messages
- 12
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- US
- State
- Iowa
I was sure the "do I have this?" questions would be numerous and look there's a whole section for it. My situation is complex and my brain is all foggy and tired but I'm trying to leave the blackout curtain open long enough to cool the room so I will try to get started and probably ramble on forever in the end while still missing something. Warning for those suffering attention span issues right now.
I have had insomnia forever. Starting around 12years old it got so severe and the people around me demanded so much that I shut down. I have no emotions or physical sensations to report for about 10 years. I don't know what went on during that time. There is just the memory of the horrible dull aching pain inside that never went away even when I could turn everything else off. That is the first thing that complicates this. I have a huge amount of self control and resistance to pain.
Second as treatment of my insomnia has advanced for a decade I have been put on various pills that stop pain. I am on neurontin (works for sleep a little better than lyrica), amitriptyline (omg was that the most painful experience ever when I missed a dose), and a variety of other things I am slowly cutting out down to hopefully just belsomra, a benzo, and hydroxyzine. We shall see. I got rid of 800mg of seroquel and am working on trazodone now.
Third I have damaged many joints falling off horses, mountain bikes, and rolling 4 wheelers. I was indestructible and had the reflexes to get out of anything with only minor damage. Minor damage has added up to wearing on my knees, right hip, right shoulder, misshapen right ankle, etc.... so it's hard to separate what is just an old wound being worn down and causing pain.
I had a 4th.... to be filled in when my brain works. Oh yeah.... Major event in life before symptoms became considerably more serious. I had a cascade of events from some bed rest turn into constipation, turn into distended colon, turn into inflammation throughout intestines, gained a fructose malabsorption problem, got less active, couldn't bend or breathe without threatening to squash my stomach enough to vomit because my abdomen was so distended, my heart beat went into a minimum of 120bpm with 160 happening, and all they treated me with was stool softener. :roll: First I solved the abdominal pressure and lack of digestion with a carefully laid out course of stimulant laxatives researched from articles by gastroenterologists. Still I had fluid retention, inflammation, and my back deteriorated fast but I told myself all winter I'll just survive and fix it when I can hike in the spring. Well spring came and I couldn't stand for more than 5mins. With no tests done and only a visible look at my back I was sent to physical therapy where they massaged tight muscles and gave me exercises. 2 days later I fell on the wood floor and a cyst burst at my tailbone. Turned out I had an infection under an old puncture wound near my spine that had spread through my back. Rounds and rounds of antibiotics, draining, major surgery, and more antibiotics things improved greatly. At that point my doctor over seeing my surgery and recovery took off and my gp wasn't even aware of what happened and all the things they did. :roll: So no one followed up on my back which still hurts. I have slowly brought back my core muscle so my abdomen is not distended and my back usually doesn't strain to the point I can't keep going. I just have some flexibility and tightness problems. My heart rate and lungs have greatly improved without infection floating around in my system doing who knows what.
I think background covered.
Reasons I do think this illness is possible. No amount of insomnia meds will make me sleep. They keep throwing me to psychiatrists because neurologists didn't want to deal with it but like I mentioned 800mg of seroquel and 4 other meds maxed at the same time and I don't always sleep. I have noticed a trend that at first I debated rapid cycle bipolar but it really feels like it starts physical and the mental is secondary. I will start having more trouble falling asleep and not sleep until 6 or 7am. Then, I start sleeping 12 hours or so with sometimes 10-12 hrs, 4hrs awake, and 10-12hrs again. After a week or 2 from the onset of change in my sleeping habits I start waking up earlier, falling asleep easier, and it all goes away. During this time of sleep disturbance and sudden hypersomnia I get very low energy, it seems hard to move, I feel more physically stressed doing activities, I forget things and get confused easier... I'm sure I could keep adding. Then my brain clears, my motivation comes back, my sleep goes normal, and all is well (except the joints that never stop hurting). In the past I've tried switching up my meds and trying to wake up earlier so I'll be tired enough to sleep sooner but it just has no effect except negative ones. I have decided it's best to let it run it's course and just try not to let the low energy pull me into actual depression. I have not identified triggers for these events except probably weather changes. It just got cool here and I just started to get back to normal yesterday.
Minor things... I have constant yeast infections everywhere. My armpits break out, under my breasts a little less often, my lips sometimes have to be peeled open in the morning and scrubbed through the day which I think the sensitivity in my mouth is from a yeast infection with no visible symptoms, your typical intimate parts yeast infection causing pain, and I'm sure we could find somewhere else it's appearing. I have chronic bladder symptoms but never test positive for bacteria that isn't normal for the area. I have white blood cells in my urine and high bacteria count for normal bacteria so most of the time the sample is written off as contaminated. When I finally do get antibiotics due to tenderness or just complaining to enough doctors I feel so much better. Right now I am taking azo's anti-inflammatory and otc antibiotic for urinary tract daily and it seems to help. I also have to make sure I am flushing enough fluids through. All tests done for insomnia, tachycardia, pulmonology, blood cultures, etc... are normal. My kidney numbers have started to stray outside normal the past couple years and that's it. On paper I am 100% healthy. Doctors all blow me off after awhile and I'm basically marked down as hypochondriac at the ER so it's pointless to go.
With a piece of tramadol the day of and the day after I started martial arts again but I was taking falls and beating myself up while ignoring the pain. I can keep ignoring the pain even if it means my husband has to pull me upright the rest of the night cause my neck, shoulders, and abs don't work but my body crashed. Inflammation, bladder infections, deep exhaustion, and antibiotics later I am switching to sword class instead of taking falls. Building upper body strength and around every other joint should help. Except class 2 would have been last wednesday and that's a few days after my latest sleep/motivation down swing. Hopefully tomorrow I am good enough but I am just barely keeping a clear head.
Finally I was leaning more towards CFS but my dad said my grandma and uncle on his side have fibromyalgia. Back to the main question.. can you have masked pain in this situation and the rest of the symptoms still point to it or am I off in the weeds? If possible I'm not sure how to approach my doctor about it. I see a psychiatrist for my insomnia meds who is willing to do anything but legally he can only do so much before it can't be justified as part of his specialty. I found an older doctor who is one of those that listens to patients and understands patients know their body. I think he can tell the amount of stuff I've been through too. He listens fairly well. I just don't know where to start. I don't know if I want to start getting a true diagnosis. Many places said it would take 2 years and I have been through enough doctors, tests, and $4k owed to just one hospital. I am looking for opinions and people who actually understand me instead of blowing off everything I complain about. I quit posting to FB for awhile and I've quit telling my husband when something is wrong because it always gets blown off as me whining about some minor thing. It is tiring. I am too tired. I want to cry and go to sleep.
I have had insomnia forever. Starting around 12years old it got so severe and the people around me demanded so much that I shut down. I have no emotions or physical sensations to report for about 10 years. I don't know what went on during that time. There is just the memory of the horrible dull aching pain inside that never went away even when I could turn everything else off. That is the first thing that complicates this. I have a huge amount of self control and resistance to pain.
Second as treatment of my insomnia has advanced for a decade I have been put on various pills that stop pain. I am on neurontin (works for sleep a little better than lyrica), amitriptyline (omg was that the most painful experience ever when I missed a dose), and a variety of other things I am slowly cutting out down to hopefully just belsomra, a benzo, and hydroxyzine. We shall see. I got rid of 800mg of seroquel and am working on trazodone now.
Third I have damaged many joints falling off horses, mountain bikes, and rolling 4 wheelers. I was indestructible and had the reflexes to get out of anything with only minor damage. Minor damage has added up to wearing on my knees, right hip, right shoulder, misshapen right ankle, etc.... so it's hard to separate what is just an old wound being worn down and causing pain.
I had a 4th.... to be filled in when my brain works. Oh yeah.... Major event in life before symptoms became considerably more serious. I had a cascade of events from some bed rest turn into constipation, turn into distended colon, turn into inflammation throughout intestines, gained a fructose malabsorption problem, got less active, couldn't bend or breathe without threatening to squash my stomach enough to vomit because my abdomen was so distended, my heart beat went into a minimum of 120bpm with 160 happening, and all they treated me with was stool softener. :roll: First I solved the abdominal pressure and lack of digestion with a carefully laid out course of stimulant laxatives researched from articles by gastroenterologists. Still I had fluid retention, inflammation, and my back deteriorated fast but I told myself all winter I'll just survive and fix it when I can hike in the spring. Well spring came and I couldn't stand for more than 5mins. With no tests done and only a visible look at my back I was sent to physical therapy where they massaged tight muscles and gave me exercises. 2 days later I fell on the wood floor and a cyst burst at my tailbone. Turned out I had an infection under an old puncture wound near my spine that had spread through my back. Rounds and rounds of antibiotics, draining, major surgery, and more antibiotics things improved greatly. At that point my doctor over seeing my surgery and recovery took off and my gp wasn't even aware of what happened and all the things they did. :roll: So no one followed up on my back which still hurts. I have slowly brought back my core muscle so my abdomen is not distended and my back usually doesn't strain to the point I can't keep going. I just have some flexibility and tightness problems. My heart rate and lungs have greatly improved without infection floating around in my system doing who knows what.
I think background covered.
Reasons I do think this illness is possible. No amount of insomnia meds will make me sleep. They keep throwing me to psychiatrists because neurologists didn't want to deal with it but like I mentioned 800mg of seroquel and 4 other meds maxed at the same time and I don't always sleep. I have noticed a trend that at first I debated rapid cycle bipolar but it really feels like it starts physical and the mental is secondary. I will start having more trouble falling asleep and not sleep until 6 or 7am. Then, I start sleeping 12 hours or so with sometimes 10-12 hrs, 4hrs awake, and 10-12hrs again. After a week or 2 from the onset of change in my sleeping habits I start waking up earlier, falling asleep easier, and it all goes away. During this time of sleep disturbance and sudden hypersomnia I get very low energy, it seems hard to move, I feel more physically stressed doing activities, I forget things and get confused easier... I'm sure I could keep adding. Then my brain clears, my motivation comes back, my sleep goes normal, and all is well (except the joints that never stop hurting). In the past I've tried switching up my meds and trying to wake up earlier so I'll be tired enough to sleep sooner but it just has no effect except negative ones. I have decided it's best to let it run it's course and just try not to let the low energy pull me into actual depression. I have not identified triggers for these events except probably weather changes. It just got cool here and I just started to get back to normal yesterday.
Minor things... I have constant yeast infections everywhere. My armpits break out, under my breasts a little less often, my lips sometimes have to be peeled open in the morning and scrubbed through the day which I think the sensitivity in my mouth is from a yeast infection with no visible symptoms, your typical intimate parts yeast infection causing pain, and I'm sure we could find somewhere else it's appearing. I have chronic bladder symptoms but never test positive for bacteria that isn't normal for the area. I have white blood cells in my urine and high bacteria count for normal bacteria so most of the time the sample is written off as contaminated. When I finally do get antibiotics due to tenderness or just complaining to enough doctors I feel so much better. Right now I am taking azo's anti-inflammatory and otc antibiotic for urinary tract daily and it seems to help. I also have to make sure I am flushing enough fluids through. All tests done for insomnia, tachycardia, pulmonology, blood cultures, etc... are normal. My kidney numbers have started to stray outside normal the past couple years and that's it. On paper I am 100% healthy. Doctors all blow me off after awhile and I'm basically marked down as hypochondriac at the ER so it's pointless to go.
With a piece of tramadol the day of and the day after I started martial arts again but I was taking falls and beating myself up while ignoring the pain. I can keep ignoring the pain even if it means my husband has to pull me upright the rest of the night cause my neck, shoulders, and abs don't work but my body crashed. Inflammation, bladder infections, deep exhaustion, and antibiotics later I am switching to sword class instead of taking falls. Building upper body strength and around every other joint should help. Except class 2 would have been last wednesday and that's a few days after my latest sleep/motivation down swing. Hopefully tomorrow I am good enough but I am just barely keeping a clear head.
Finally I was leaning more towards CFS but my dad said my grandma and uncle on his side have fibromyalgia. Back to the main question.. can you have masked pain in this situation and the rest of the symptoms still point to it or am I off in the weeds? If possible I'm not sure how to approach my doctor about it. I see a psychiatrist for my insomnia meds who is willing to do anything but legally he can only do so much before it can't be justified as part of his specialty. I found an older doctor who is one of those that listens to patients and understands patients know their body. I think he can tell the amount of stuff I've been through too. He listens fairly well. I just don't know where to start. I don't know if I want to start getting a true diagnosis. Many places said it would take 2 years and I have been through enough doctors, tests, and $4k owed to just one hospital. I am looking for opinions and people who actually understand me instead of blowing off everything I complain about. I quit posting to FB for awhile and I've quit telling my husband when something is wrong because it always gets blown off as me whining about some minor thing. It is tiring. I am too tired. I want to cry and go to sleep.
