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Kaliska

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DX FIBRO
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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.
 

DK_engineer

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Joined
Jun 20, 2015
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DX FIBRO
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Hi and welcome
It sounds like you have quite a lot going on. I'm sorry that you are not being heard by the people in your life. When you feel like the people around you don't believe you, it can make everything that much worse.

There are a lot of other conditions that have similar symptoms to fibromyalgia, so it is important to get tested to rule other things out. Fatigue, IBS (irritable bowl syndrome), bladder issues and sleep disturbances are all associated with fibromyalgia.

The central symptom is long-term pain in all 4 quadrants of the body which is not caused by tissue damage or inflammation. The pain is caused by a defect in the central nervous system, which changes how we process sensory signals. Basically, the spinal column and lower brain amplify pain, and interpret sensations that are normally not painful (i.e. touch) as pain.

I suspect in my case I ignored the pain while it was at lower levels. After the pain stepped up to a level I could not ignore any longer I was diagnosed with fibromyalgia. It has been a real struggle to learn how to function again with this much pain. I can see now all the ways I was compensating and adapting in the years before my diagnosis.

Other aspects of fibro: intense exercise makes symptoms worse, mild exercise sometimes makes it better, lack of sleep makes symptoms worse, and stress makes symptoms worse.

hopefully this is helpful to you!
 

Kaliska

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DX FIBRO
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US
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Iowa
I know my post is long for most people to read and answer but my life has been complicated. Aside from all the potential things already treating pain I have a very high pain tolerance so things may go unnoticed. Apparently often pain reactions happen when I'm not fully awake. Right now both thighs, knees, shoulder blades, and lower back hurt but I just did 2 hrs of light martial arts Wednesday night. I have no concept of what normal is so I can't really say if I am having more pain than others in certain places. Then all those things that can mask it. I don't know if a doctor would do anything and my husband is burnt out taking me to appointments. I can't afford to go through specialists and tests again. Not monetary and not personally from dragging my husband through it. Especially when he doesn't think I have enough pain for it to be anything they will diagnose. I guess right now I'm just at keep lowering insomnia meds and wait to see if enough pain gets severe enough that I can report in detail to a doctor or decide when I want to pursue ruling things out for a probable CFS diagnosis.
 

DK_engineer

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It sounds like it might be helpful for you to keep a logbook of your symptoms. Having a written record makes it easier for you to explain what you experiencing to a doctor, especially if you can point out patterns or give an overall summary. My pain levels change throughout the day, so structured my logbook around that, instead of giving just one rating for the day.

Pain scales can be challenging to use, especially if they give examples of how a non-fibro person would rate pain. What has helped me is to think of pain as mild, moderate or severe. Mild pain can be tuned out (1 to 3 on the scale) . Moderate pain keeps demanding your attention (4 to 6 on the scale) . Chronic severe pain causes personality changes (7 through 9 on the scale) . Then within each of those divisions I rate the pain as "almost in the lower category", "definitely in this category", or "almost in the next category up".
 

Kaliska

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DX FIBRO
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It's not pain exactly. That's what makes it so hard to quantify. I once made a thread of "pain but without pain" to try to describe it. It's not like being injured or overworking a muscle or stretching something too far. It's deep and makes me not want to move. It's taking an extra heartbeat to consider if there is any other way to the bathroom than the stairs even though I know there isn't. Some days stubbornness with slow movement and hyperventilation is all that gets me to the bathroom. Other days I nearly jog up the stairs. There are days I get a lot done and days that just being awake on computer, tv, and forcing myself to the bathroom when necessary are all I can accomplish. Sometimes I lay there debating how much effort it would take to turn off the light 5' away from the bed. If it weren't for my husband some nights I would go to sleep with it on. Possibly with my head under a pillow because that's less effort. When I sleep it's finding a position that my knees, lower back, and shoulders all line up in a way that doesn't cause mystery discomfort. My shoulders are always on the end of my pillows. If I fall asleep in the wrong position it will be hell to wake up and move and while the discomfort goes away it means a bad day of playing games, tv watching, forcing myself to the bathroom, and then feeling depressed and frustrated nothing got done.
 

Kaliska

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I'm not sure my last post went through. Site is being weird. Constantly reloading a page over and over until I tell it to stop and sometimes giving me posting errors. I was just wondering what specialist you would see for something like fibromyalgia or CFS? The general practitioner I have can't/won't prescribe controlled substances or pain medication beyond some extra strength ibuprofen. Can't take NSAIDs. I cannot find another general practitioner. It took 6 months to find this one with openings. I can get him to refer me and the specialist to prescribe. I have to talk my husband into going through this all again.
 

DK_engineer

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A rheumatologist is usually the specialist that makes the diagnosis. Autoimmune diseases can have similar symptoms as fibromyalgia and CFS, so it is good to work with a specialist who understands those kinds of illnesses. I have a friend with an autoimmune type of arthritis who says some days it feels like someone turned up the gravity. Maybe that is kind of like what you are feeling? A rheumatologist can figure out whether you hhave CFS or something else.
 

diamond

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You do have a lot going on and DK gives great advice....but may i suggest you give up sports that throw your body around.

Whatever you have i think you need to think long term and while exercise is extremely important if possible maybe something more gentle as for someone with a chronic illness you seem to be very harsh on a body that is screaming out to be taken care of.

I really sympathize with wanting to carry on as normal but we have to learn a new respect for our bodies if we are going to manage our symptoms.
 

Kaliska

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You can suggest it but there is only one person who can suggest any limits for me with impunity and 2 who can do so because it's their job but I will fire them for someone else if they repeatedly do not match my point of view. If I had not already switched to a sword class because I listen to my body you'd just have reinforced me pushing myself to stay at the same martial art. I will do what I want until I break and well I broke so plan b but, my body is never going to be better. It only gets worse. It only falls apart more. It only gets closer to need joint surgeries even if there is no underlying cause but the damage I did falling off horses and mountain bikes as a kid. The more muscle I keep around those joints the less stress they suffer and the more they can do. I am only as active, mobile, and healthy as I am because I said I was going to go do what I want even if it meant dying on some hiking trail in the woods. At the time I couldn't walk a treadmill set slow without my heart and lungs exploding and my back locking up. I went from 1mile to 4 (I did 5 a couple times but it turned painful) this past summer. I perfected getting 10-20lb channel catfish and hauling them back from nearby water sources. I've hunted down all sorts of wildlife and plant life that interests me. Only because there's this extreme stubborn streak in me that won't let me give up and not push against limits. It's the same thing that kept me alive through 6-8years of feeling suicidal. This is actually an easier fight than that one was. It's just still sometimes overwhelming and depressing.

So I told my psychiatrist of the cycle (I say crashes) I have been increasingly notice and that I didn't think it was bipolar but it was so hard to explain how I feel. Kind of like the trying to explain "pain without pain" sensation. He went with his specialty which is no surprise and I am trying lithium. No reason not to whether I agree with him or not and this would be an acceptable time to be wrong instead of what I have to pursue if I'm right.
 

diamond

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That's me out of making suggestions...with respect I am not sure why you came to this site asking for help if you have your own firm point of view and say that is the only one you will follow .....and abruptly dismiss anyone else's kind thoughts and taking the trouble to reply.

I wish you could luck on your solo journey to health.
 
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Kaliska

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DX FIBRO
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Country
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State
Iowa
I was looking for a new place to find similar people who can relate and compare my symptoms to see how well it matches because my other forum I was hanging out on the CFS and fibro sections got an overhaul that is practically unusable on my computer resolution.

I'm not ignoring what DK says. I started a journal of symptoms, I tried to explain my sensations more closely, I asked what specialist, and I brought it up with the doctor who manages most of my meds and all of my insomnia which is the psychiatrist. I'm just not going to let it control my life more than I am forced to and I don't have the money or my husband included the energy to see a regular gp, get sent to a specialist, and go through it all again of trying to sort out my symptoms. We spent 3 years of tests and appointments that ended in no answers that I didn't conclude myself a few years back. For now I am testing lithium. Although I feel more sore today after the 3rd dose but I also started my period and haven't had one since June (likely PCOS and lithium can impact PCOS) so like usual with me there is a complication to defining the important symptoms. This will take more testing. If I go back after a month and lithium didn't work my psychiatrist can refer me as needed. We talked to my husband's brother who is an orthopedic surgeon because I was using small cuts of tramadol pills to get through martial arts and he suggested a specific doctor to see if we just want to confirm a few joints aren't overly damaged and get enough tramadol for a couple days a week if needed until we make a decision what to pursue.
 
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