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tiredone

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I've spent close to thirty years back and forth and am now only starting to get answers about my on going health issues I've battled.

Among them are depression, fatigue, insomnia, hypersomnia, sleep apnea and chronic pain. My chronic pain tends to reside mostly in my left shoulder, middle back, neck and head that can range from tension to full out muscle spasms that tend to give me nasty headaches at the base of my left skull and left eye. My right shoulder, back and neck can get in on the game from time to time as well. Additionally my left arm below my shoulder (due to the neck pain) as well as my left hip tend to hurt off and on but not consistently. I also now have what appears to be plantars fibromatosis in my left foot. Pain seems to like the left side of my body.

Additionally to that I've not had many good days in 30 years. The few days that I've felt great are so infrequent, I tend to say I can count them on one hand. They are so abnormal that when I do feel really good, I begin to question what's wrong with me. Most of the time I have quite a bit of fatigue as well as can be very tired. After treatment for Sleep Apnea, my sleeping got better but my ability to wake up got worse, and I still need my afternoon naps that range from 1 to 3 hours. Weekend I tend to take 3 or 4 naps a day, same with vacations.

In addition to that, I can be sensitive to smells (I tend to smell things others can't), sensitive to noise, my ears ring almost constantly from a low ring to sometimes very loud, and I can loose concentration. Over the years that has ranged from full out feeling fogged to where I'm at today it isn't as bad. I do tend to get odd out of sync feelings in the center of my forehead and things just don't seem to click right, I can very often forget what I'm talking about mid sentence. The out of sync feelings come and go and its very hard to concentrate during them. Sometimes it seems like things are moving slightly slower, sometimes they just dont jive. When I was younger this was much more present, and there were a few years I was extremely sensitive to light (It shows up on occasion now but usually doesnt last for long). The largest issue out of all of this is the constant feeling of feeling like garbage. I'm always tired, I never feel great, but there's usually nothing to pin it on. I've gone this way since I was a teenager, and I find the older I get the harder it is to deal with getting through the day. I often count not only the work days by the number of days left in the week, but sometimes by the hour since it can become hard to fight through the day.

So give all this... I'm not sure where to turn. I'm not sure if given the more regional issues with pain if this would even sound remotely like fibromyalgia. Everything I tend to read tends to keep me coming back to here or chronic fatigue. I've had the full gambit of normal tests for fatigue and as usual, I come back as healthy despite my usual daily issues. These days between the pain, tiredness and fatigue, I manage to barely get through the day and the rest of my time is spent hardly moving, asleep, or just laying around hoping to feel a bit better.

Does anyone have any thoughts about this? Could it be fibromyalgia, or am I looking in the wrong direction?
 
It could be fibro or CFS! But let's not forget that pain in some areas like the back, shoulders and so on can be caused by other things, like for example hepatic issues. Have you ever gotten checked? You mentioned your right shoulder and neck hurts, I'm not saying you could be suffering from hepatic issues, but a liver function test would be a good idea, as well as a sonography of the liver. Just to make sure your pain in that area in specific isn't being caused by that.

Just a suggestion tho. But... have you seen a rheumatologist? Have you had the trigger point test done? If your trigger point test was negative you could still be suffering from CFS.
 
I've been on various drugs, including norco since about 2010, so they monitor both my kidney and liver functions fairly closely. I had elevated Creatintine levels on NSAIDs, so they took me off them for good. Usually a fairly back and forth with most drugs before we find anything. Seems like if there's a side effect with most drugs, I'll get it at some point.

I was just referred to Dr. Clauw at the University of Michigan just recently to follow up on this. From what I've heard they may be using the new diagnosis test versus the old trigger point test. Given that he directs the Chronic pain and fatigue center here at U of M, hopefully this is a good move to get some answers in either direction (of at least rule out what it's not).

I did bark up the CFS tree, but it was many years ago in the early 90s. Given that neither diagnosis was widely accepted at that point, the furthest I ever got was to get the standard Epstein-Barr titter at that time, which was elevated, however that's about as far as I got with the exception of here's some B-12 injections. I gave up on it. It wasn't until recently when I was talking to my back pain specialist that I was going over yet again my sleep and fatigue issues that unprompted by me, she brought up the possibility. Given that I toyed with either over the years, this was finally good to hear someone say without bringing it up myself.

I was just looking to see if someone has similar symptoms as myself. Most of my pain occurs on the left side, however my lovely right shoulder and mid back get in on the action routinely, and the majority is centered between my head, neck, shoulder and back (Throwing in the foot, upper arm and hip from time to time as good measure). I do routinely have tooth (non sensitvity), gum and jaw pain (left side) as well as recession that no one has been able to explain (checked for clenching, gum disease many times, etc).

Given the stress that my body goes through very consistently after all these years, it's making it harder to do anything but work, and that's getting pretty tough most days of the week. The pain is becoming less of an issue with some of the drugs I'm taking now (nortriptyline has done 60% wonders for my headaches), but the fatigue and constantly feeling like trash is wearing very thin to make it through most days.

So that's my story, and what prompted me to come here. I guess I'll just have to wait and see how this plays out.
 
So sorry to hear that! There is nothing worse than not knowing for sure what's going on exactly with you. I'm in a similar situation right now, but trying really hard not to freak out. Hang in there, it sounds like you are heading to the right direction! I'm sure you will find some answers soon!
 
Hopefully this doctor can diagnose you and help you with your treatment. And lets say it doesn't work out, then don't give up and look for a second opinion or another specialist.
 
Hi tiredone, I read your words and they sound so familiar to me. I have also got a long history of going back and forth. The only way out of my personal health issues was with the help of Japanese acupuncture and Oriental herbs. Western doctors will send you to have tests and more tests and drugs and then experimental drugs, and the story goes on and on. Why don't you go and find a good Oriental doctor and perhaps start focusing into that direction. Perhaps going to your local health food store and asking around for a therapist with a good reputation, could be a start of a journey to the very roots of your problems.
 
I'm new to this forum and this is my first post. I have been suffering through multiple issues like you, but what got my attention is the left sided nature of your pain symptoms. I have the very same issue! I've always noticed it but I don't think I've ever pointed out to anyone that most of my significant pain is on the left side. I have major neck and shoulder pain on the left. My massage therapist and husband can actually feel knots on that side. My left foot and hip bother me and my knee on that side is much worse than the right. I've had to have crowns on 3 teeth - 2 on the left and one on the right. The nerves on the left became so inflamed in the process both times, that I had to have root canals after the crowns we're put on. It was excruciating. On the right side, the nerve got a little aggravated but quickly resolved once the crown was placed.

This is probably way too much detail but I've always had this left side imbalance. It's kind of crazy, so I'm thrilled to find another person who has the same problem.

Btw, I'm sure I have fibro but haven't found a doctor who will help me. My first and only visit to a rheumatologist - he refused to see me because he doesn't treat fibro. Instead, I was seen by his nurse practitioner... Had I known I wouldn't have gone. Anyway, it was discouraging. They gave me a diagnosis of "musculoskeletal pain".
 
I'm from the Miami area (Coral Gables) and have had this awful stuff since 1996. Fatigue, pain primarily on left side, sore trigger points and benign fasciculations when they're in flare, burning feet, weird "off center" feelings like I'm about to float out of my body, light sensitivity, GERD, and my left neck, shoulder and arm hurt A LOT, even feel weak at times. My blood work is perfect (like yours) and I became so run-down that I've taken short term disability from work. An MRI of the c-spine found nerve impingement which explains a great deal. I've already had two weeks off, and while I'm not cured, it's certainly a relief not to spend 9-10 hours per day hunched over a computer (which just makes everything feel worse). If it gets too unbearable, have your doctor authorize some time away from work (even if just a week) to get some additional tests. I absolutely HAD to, as my left arm, shoulder and even ribs were in agony at the end of each workday. Best wishes to you!
 
I have suffered with fibro for almost 3 decades. I recently had my MD refer me to a pain clinic and have now gone on Gabapintin and am on a pain patch as well. These are helping quite a lot. The most pain i am having is the lower back even as far down as the tailbone. I am having muscle spasms and these drugs don't address that issue. Do any of you have muscle spasms? One fortunate thing is I am retired now. I feel for all of you working on a computer it is so difficult. My neck used to just kill me...
Thinking of all you now, wishing you a better day tomorrow
 
Yes I have spasms and fasciculation that drive me nuts. I only have 7 days of short term disability remaining then must return to work. I have yet to get the epidural injection I was prescribed because they referred me to a pain management doctor who does not take my insurance. If I thought I could get disability I'd try to, but its very subjective, so I'm stuck. Although MRI has shown serious degenerative changes in cervical and lumbar areas, I doubt it is sufficient for a claim. I'm counting on the injection this coming week to help. Hope you're having a good day.
 
Yes I have spasms and fasciculation that drive me nuts. I only have 7 days of short term disability remaining then must return to work. I have yet to get the epidural injection I was prescribed because they referred me to a pain management doctor who does not take my insurance. If I thought I could get disability I'd try to, but its very subjective, so I'm stuck. Although MRI has shown serious degenerative changes in cervical and lumbar areas, I doubt it is sufficient for a claim. I'm counting on the injection this coming week to help. Hope you're having a good day.

I had to Google fasciculations...muscle twitches...I have those too but never connected it with everything else. I have a sister in law who was able to go on disability due to fibro. I know she hired a lawyer and went to multiple doctors before she was approved. She didn't share a lot of information - I know she was in a lot of pain especially following carpal tunnel surgery on both hands. She is a transcriptionist.
 
Look into Multiple Chemical Sensitivity, they are linked to fibro and chronic fatigue syndrome. Your acute sense of smell is a sure tell of MCS, google. MSC and fibro. Food intolerances also play a major role, you may want to read the "7 foods to avoid if you have fibromyalgia".
Doctors are lost and push presciption drugs on us making things worse....
 
I'm so sorry for that. I feel your pain, a little I guess. I just got diagnosed last year, I've been struggling, people tell me it will get easier. I don't believe it will, not after reading that. Thanks for sharing though. <3
 
let me tell you (said for emphasis), this is such classic fibromyalgia. I had no idea the full scope of the symptoms of this disease until I recently went to a pain management doctor and got into on it. I, too, have had this for about the same amount of time. I also have Psoriatic arthritis and Crohns (these often go together) I blamed the arthritis for most symptoms although i was diagnosed by a rheumetologist with fibro all along. This disease is a copy cat of many other diseases so much that many docs that don't know so much about it, that I've been diagnosed with Lupus and thought at times I had MS. Virtually all of the symptoms you describe are on the list I have from the pain clinic. I, now, after right at 30 years have relief with pain patches as well as Gapapentin,a med that treats nerve pain. It is hard to believe after going to the MD and telling him I am so overwhelmingly exhausted so much of the time,that finally it all makes sense. Crohns disease was always the answer when i complained about being so tired, never making sense if I wasn't in a flare.I would like to see you go to a Rheumatologist or better yet a pain management doctor. Good luck
 
Sorry to be so long winded, it is just so amazing the scope of the symptoms of fibro that many would never know to connect them,
on my hand out it lists allergies, chest pains, clumsiness i.e....dropping things ( in one week I dropped and broke 5 glasses and 2
cups), ran into walls etc, this along with brain fog made me feel like I had MS and was crazy as well, it includes irritable bladder as
well as IBD, muscle spasms, nocturnal myocionus (spasms in the arms and legs when a person is sleeping) tingling of arms and legs,
light and sound sensitivities, dry eyes and mouth including itching and burning of the eyes, skin problems, itching and rashes,swelling of hands which may not even be evident to others, carpal tunnel syndrome, chronic fatigue, depression, raynaud's phenomenon temporomandibular dysfunction (facial pain TMJ. it also can include migraines. It is amazing anyone ever gets the right diagnosis due to the expansive symptoms. I have Raynaud's, so my MD insisted I had Lupus. Rheumy discounted that, however , he didn't relate it to fibro, so apparently even the rheumys miss it.
 
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