Discussions By Condition: I cannot get a diagnosis.

DESPERATE HELP NEEDED - Headaches, fatigue, pressure neuropathy, GI - I'm discouraged

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • November 6, 2009
  • 05:13 PM

I am a 25yr old male college student in a professional program- I need help with my medical conditions and am not getting answers from the doctors I am seeing/ have seen in the past- they all pass each problem off as its own entity, while I feel there is some common underlying issue they are missing.

10yr history of headaches- tension/cluster type. No apparent trigger or time of day etc, very sporadic onset/offset. Last from 3-10 hours or so. Dull ache throughout the head (kind of a disoriented/fatigued/intoxicated type of feel to it). Occ have more pain/discomfort caudally near the base of the skull/neck.

Generalized muscle pain - mainly neck, shoulders and back. Hyper sensitive to pressure or touch at several points on my body- neck, shoulder, lower back and elbows. Things that sit in my pants pockets seem to bother me- they can quickly make my whole leg ache.

Sensitive stomach/ IBS - Have had a sensitive GI tract since I was very young- frequent bowel movements, diarrhea, urge to defecate. Stool is normal only about 1-2 x a week. I usually have a bowel movement 2 times a day, sometimes up to 4.

Tingling/numbness in my left hand. Generally pinky and 2nd to last finger, but also felt in all fingers and thumb at times. Very sensitive medial aspect of left elbow. Muscle pain over top of forearm when having these other symptoms. An EMG was suggestive of mild pressure neuropathy in the elbow (cubital tunnel syndrome) and at the wrist (carpal tunnel).

Vasovagal syncope w/ low blood pressure diagnosed 2 years ago.

These symtopms affect my performance as a professional student and will continue to affect me as a professional in my career. I often times have no motivation to study/work, and my life revolves around my headache and arm pain 5/7 days of the week- it stops me from studying, it prevents me from starting to study, makes me very distracted and lack of focus while trying to study..

I need help in piecing these symptoms together or what type of doctor to seek out to help me do this.

My current neurologist has a tentative diagnosis of fibromyalgia, but doesnt seem very convinced (ie i had to press him to consider that the group of these symtopms are very similar to fibromyalgia, then he agreed after pressing him)- I have been on lyrica for about 1.5 yrs now with mild improvement. I also take tizanadine (mild muscle relaxant at night)

My cardiologist just says that I will grow out of the syncope eventually and I am on fludrocortisone

I have been through multiple MRI, CT, cervical rads, EEG, all for my headache
Have been tested neg for gluten allergy and ANA.
Have had a colonoscopy to help w/ GI issue diagnosis - all wnl

My father had diabetes and always complained of "being painful" but was never figured out/localized etc...
My older half brother has been diagnosed w/ MS
An uncle has issues w/ cervical vertebrae


Please help, I fear that my career is going to suffer if I dont get things figured out- I'll always be tired, unmotivated, thinking with a cloudy head from my headache, and be struggling through my day fighting off the fatigue and muscle pain.

Thank you so very much for you time, I greatly greatly appreciate it.

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9 Replies:

  • Does anyone have any ideas? I really need some suggestions
    Anonymous 42,789 Replies
    • November 7, 2009
    • 03:59 PM
    • 0
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  • Does anyone have any ideas? I really need some suggestionsI'm no doctor,nurse anything like that, but it does sound like either fibromyalgia to me, or a nerve pressing against your spine. I have something similar to your pains. I've gone to I count on hands how many doctors I've seen. And nothing. I did however see a doctor that did tell me he thought my herniated disk in my back was alot of my cause. Something about the nerve pressing against my spine. That's something they could check on you too. I have severe foot pain the never did find out what the cause of is. I'm leaning towards fibromyalgia though. I had chemo and radiation treatments just recently due to breast cancer and had no problems with my pain the whole time but now it's worse than it's ever been. I'm taking 1800 mg of norotin for nerve damage to my feet caused from the chemo. I'm thinking the chemo messed my nerves up in my feet, and or the medication is making the fibromyalgia worse. My advice to you is to hang in there and keep searching for a doctor and you will find one that will eventually find out what it is. Make them do more test until they do find it. Sometimes we do have to take our health into our own hands to find out what is wrong with us. When your hurting and you have a career to work with you feel obligated to do whatever it takes to make you better. It does sound like fibromyalgia or a pinched nerve somewhere though just my opinion. Keep looking for answers and don't give up. Good luck
    Anonymous 42,789 Replies
    • November 11, 2009
    • 01:04 AM
    • 0
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  • I am a 25yr old male college student in a professional program- I need help with my medical conditions and am not getting answers from the doctors I am seeing/ have seen in the past- they all pass each problem off as its own entity, while I feel there is some common underlying issue they are missing. 10yr history of headaches- tension/cluster type. No apparent trigger or time of day etc, very sporadic onset/offset. Last from 3-10 hours or so. Dull ache throughout the head (kind of a disoriented/fatigued/intoxicated type of feel to it). Occ have more pain/discomfort caudally near the base of the skull/neck. Generalized muscle pain - mainly neck, shoulders and back. Hyper sensitive to pressure or touch at several points on my body- neck, shoulder, lower back and elbows. Things that sit in my pants pockets seem to bother me- they can quickly make my whole leg ache. Sensitive stomach/ IBS - Have had a sensitive GI tract since I was very young- frequent bowel movements, diarrhea, urge to defecate. Stool is normal only about 1-2 x a week. I usually have a bowel movement 2 times a day, sometimes up to 4. Tingling/numbness in my left hand. Generally pinky and 2nd to last finger, but also felt in all fingers and thumb at times. Very sensitive medial aspect of left elbow. Muscle pain over top of forearm when having these other symptoms. An EMG was suggestive of mild pressure neuropathy in the elbow (cubital tunnel syndrome) and at the wrist (carpal tunnel). Vasovagal syncope w/ low blood pressure diagnosed 2 years ago. These symtopms affect my performance as a professional student and will continue to affect me as a professional in my career. I often times have no motivation to study/work, and my life revolves around my headache and arm pain 5/7 days of the week- it stops me from studying, it prevents me from starting to study, makes me very distracted and lack of focus while trying to study.. I need help in piecing these symptoms together or what type of doctor to seek out to help me do this. My current neurologist has a tentative diagnosis of fibromyalgia, but doesnt seem very convinced (ie i had to press him to consider that the group of these symtopms are very similar to fibromyalgia, then he agreed after pressing him)- I have been on lyrica for about 1.5 yrs now with mild improvement. I also take tizanadine (mild muscle relaxant at night) My cardiologist just says that I will grow out of the syncope eventually and I am on fludrocortisone I have been through multiple MRI, CT, cervical rads, EEG, all for my headacheHave been tested neg for gluten allergy and ANA.Have had a colonoscopy to help w/ GI issue diagnosis - all wnl My father had diabetes and always complained of "being painful" but was never figured out/localized etc...My older half brother has been diagnosed w/ MSAn uncle has issues w/ cervical vertebrae Please help, I fear that my career is going to suffer if I dont get things figured out- I'll always be tired, unmotivated, thinking with a cloudy head from my headache, and be struggling through my day fighting off the fatigue and muscle pain. Thank you so very much for you time, I greatly greatly appreciate it. I am in the process also of trying to figure out what is wrong with me I have alot of similar problems and more as you do. I am wondering if it's cushing's?? Some of my symptoms did improve mainly fatigue and bloaded/constipated feeling when I started on thyroid meds (armour) and am up to 120's or 2 grains. But others did not. It is also hard to get a thyroid diagnosis because they go by old lab values and don't usually test the right things that leaves alot of people hypothyroid and miserable. Just keep pushing ask to have tsh, FREE t3 and FREE t4. Another possibility Adreanal fatigue. Have your cortisol tested by a 24 hr saliva test if possible.
    mommyjamieof2 4 Replies
    • November 11, 2009
    • 10:47 PM
    • 0
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  • I am in the process also of trying to figure out what is wrong with me I have alot of similar problems and more as you do. I am wondering if it's cushing's?? Some of my symptoms did improve mainly fatigue and bloaded/constipated feeling when I started on thyroid meds (armour) and am up to 120's or 2 grains. But others did not. It is also hard to get a thyroid diagnosis because they go by old lab values and don't usually test the right things that leaves alot of people hypothyroid and miserable. Just keep pushing ask to have tsh, FREE t3 and FREE t4. Another possibility Adreanal fatigue. Have your cortisol tested by a 24 hr saliva test if possible.The adrenal issue is maybe a possibility.... cushings wouldnt fit for me though- I'm 6 foot and 145 lbs, actually down about 10 lbs from 5 years ago... if cushings I should have weight gain...fibromyalgia is prob my top idea but i'm not 100 percent convinced it is the cause of everything.... any more ideas?
    Anonymous 42,789 Replies
    • November 12, 2009
    • 05:32 AM
    • 0
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  • The adrenal issue is maybe a possibility.... cushings wouldnt fit for me though- I'm 6 foot and 145 lbs, actually down about 10 lbs from 5 years ago... if cushings I should have weight gain...fibromyalgia is prob my top idea but i'm not 100 percent convinced it is the cause of everything.... any more ideas?I firmly believe how we feel is related to our diet and environment. Please read about Paleolithic diets and Primal Blueprint by Mark Sisson. His website is Mark's Daily Apple - you can order the book from there - I have no financial gain. I am an RN who has suffered for years with headaches, IBS, joint pain, etc and since changing my diet I am symptom free (unless I go off and eat crap -which includes whole grains - for any more than a meal or two). Try it for 30 days and se the difference. I want to tell the world! Please post again if you try it and let me know if it helps.
    Anonymous 42,789 Replies
    • November 13, 2009
    • 08:25 PM
    • 0
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  • Have you looked into a chiropractor? If you read about them and you will probably believe in them. It's pretty fascinating what they can do. It can strengthen your immune system and fix spine and nerve issues. A lot of people swear by them. Good luck.I am a 25yr old male college student in a professional program- I need help with my medical conditions and am not getting answers from the doctors I am seeing/ have seen in the past- they all pass each problem off as its own entity, while I feel there is some common underlying issue they are missing.10yr history of headaches- tension/cluster type. No apparent trigger or time of day etc, very sporadic onset/offset. Last from 3-10 hours or so. Dull ache throughout the head (kind of a disoriented/fatigued/intoxicated type of feel to it). Occ have more pain/discomfort caudally near the base of the skull/neck.Generalized muscle pain - mainly neck, shoulders and back. Hyper sensitive to pressure or touch at several points on my body- neck, shoulder, lower back and elbows. Things that sit in my pants pockets seem to bother me- they can quickly make my whole leg ache.Sensitive stomach/ IBS - Have had a sensitive GI tract since I was very young- frequent bowel movements, diarrhea, urge to defecate. Stool is normal only about 1-2 x a week. I usually have a bowel movement 2 times a day, sometimes up to 4. Tingling/numbness in my left hand. Generally pinky and 2nd to last finger, but also felt in all fingers and thumb at times. Very sensitive medial aspect of left elbow. Muscle pain over top of forearm when having these other symptoms. An EMG was suggestive of mild pressure neuropathy in the elbow (cubital tunnel syndrome) and at the wrist (carpal tunnel). Vasovagal syncope w/ low blood pressure diagnosed 2 years ago. These symtopms affect my performance as a professional student and will continue to affect me as a professional in my career. I often times have no motivation to study/work, and my life revolves around my headache and arm pain 5/7 days of the week- it stops me from studying, it prevents me from starting to study, makes me very distracted and lack of focus while trying to study..I need help in piecing these symptoms together or what type of doctor to seek out to help me do this.My current neurologist has a tentative diagnosis of fibromyalgia, but doesnt seem very convinced (ie i had to press him to consider that the group of these symtopms are very similar to fibromyalgia, then he agreed after pressing him)- I have been on lyrica for about 1.5 yrs now with mild improvement. I also take tizanadine (mild muscle relaxant at night)My cardiologist just says that I will grow out of the syncope eventually and I am on fludrocortisoneI have been through multiple MRI, CT, cervical rads, EEG, all for my headacheHave been tested neg for gluten allergy and ANA.Have had a colonoscopy to help w/ GI issue diagnosis - all wnlMy father had diabetes and always complained of "being painful" but was never figured out/localized etc...My older half brother has been diagnosed w/ MSAn uncle has issues w/ cervical vertebraePlease help, I fear that my career is going to suffer if I dont get things figured out- I'll always be tired, unmotivated, thinking with a cloudy head from my headache, and be struggling through my day fighting off the fatigue and muscle pain. Thank you so very much for you time, I greatly greatly appreciate it.
    Anonymous 42,789 Replies
    • September 20, 2010
    • 06:38 AM
    • 0
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  • I came looking for answers, too, so I'll explain my situation and maybe it will be of some help. I was diagnosed 30 years ago with Irritable bowel syndrome. After a few doctors attempted to treat it with medication (which I resisted) I found a gastroenterologist who explained the digestive process to me and gave me a solution that worked like a charm. The only problem was (and is) that it's time consuming and requires a life-long commitment. In a nutshell, it's one tablespoon of Metamucil three times a day, and four heaping tablespoons of raw millers bran per day. I put the bran into cereal, which makes it easy to eat. But that's a lot of bran and to do it every day can be tedious. The first three weeks of the routine can seem to make the symptoms worse, but after that, the body gets used to the change and it's smooth sailing from then on, as long as you keep doing it. Stop it and the symptoms return. But while I was doing it, all symptoms disappeared and my poops were perfect and like clockwork every day. It was like magic. But as I said, it's difficult to commit to, and I have fallen out of the habit. Thankfully, though, my IBS symptoms aren't as severe as they were when they first appeared and if they appear, I can usually deal with them with Metamucil and bran. The problem that has appeared more recently is vasovagal syncope... lightheadedness, sweating, and I actually fainted a couple of times. Accompanying these symptoms, is a feeling of discomfort from pressure or inflammation of the left side of my abdomen, at about the same vertical level as my naval. I did some research on vasovagal syncope and saw that episodes are usually brought on by triggers, and everyone has their own particular triggers. I have been to a number of doctors about this and it seems that they agree that it is related to vasovagal syncope, but beyond that, I'm still researching. But in my self-diagnosis, it does seem to me that my main trigger is a disruption in my digestion... sort of pre-constipation, which is why there's always that pressure in my left abdomen. I believe that the pressure there stimulates or irritates some nerve that may start a vasovagal response, and those symptoms vary depending on the situation. But as my body builds up to one of these episodes, which I stupidly ignore all too often, there can be less obvious symptoms that are very similar to ones that you have described. Muscle weakness, fatigue, difficulty with focus, both visually and mentally, and other things as well. I think I read somewhere that vasovagal responses are related to migraines because of their relation to a particular nerve (the vagus nerve?) which runs from the head down through the body. I really relate to your conviction that many of your symptoms are somehow related. I feel the same way about my situation. Even though symptoms may manifest differently at different times, and may seems unique, my instincts tell me that they are often related. I began to get full blown anxiety attacks a number of years ago, for which I am now taking medication, but I believe that they could be somehow related. Perhaps I have a particular sensitivity that manifests in anxiety or a shutdown of normal bowel function. This may sound like quite a reach, but I remember on one occasion, I was drinking a frozen drink and felt a "brain freeze" coming on. I get them a lot if I'm not careful when eating or drinking frozen foods or drinks. But on this particular occasion, the acute pain that usually is limited to my forehead and can be massaged out, extended down my back and neck, and was so painful that I thought I would pass out. It was how I imagine a full body migraine would feel. Looking back, I'm convinced there was some relation to all of these other things I've mentioned. The one thing that was consistently advised in all that I read about vasovagal syncope was how it's most important to learn how to avoid the triggers. In my case, I'd probably avoid MANY problems if I didn't allow myself to get at all constipated. But I did, and now I'm getting over a couple of days of feeling pretty bad, on top of a head-cold. Waiting for the Metamucil to kick in. Anyway, I don't if any of what I've written resonates or helps in any way. I suggest looking on Google for info about the vagus nerve. The number of bodily functions it is connected to is astounding, and it may be particularly interesting to you. Good luck.
    Anonymous 42,789 Replies
    • October 23, 2010
    • 06:53 PM
    • 0
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  • Sorry you are going through this. I have similar issues. I have been diagnosed with neuropathy(no diabetes) from a neck injury. I have several discs that have ruptured and are bulging. You mentioned you have had MRI's, did you have any for the neck? Due to my headaches, I had a recent brain scan with showed a Pineal cysts(cyst on the pineal gland). However the Drs still think the headaches (and other symptoms you described) are from my neck injuries. FYI: I have tried all kinds of homeopathic remedies with the best pain relief from "manual movement" from a PT. Ordinary PT have injured me, with treatment, however the manual movement is so gentle it causes no additional pain. I have tried accupunture, with limited pain relief however, it helped tremendously when my meds stopped being effective. I don't know why, but my medications are much more effective after a session with the accupuncturist. Good luck to you.
    Anonymous 42,789 Replies
    • November 20, 2010
    • 05:04 AM
    • 0
    Flag this Response
  • I am a 25yr old male college student in a professional program- I need help with my medical conditions and am not getting answers from the doctors I am seeing/ have seen in the past- they all pass each problem off as its own entity, while I feel there is some common underlying issue they are missing.10yr history of headaches- tension/cluster type. No apparent trigger or time of day etc, very sporadic onset/offset. Last from 3-10 hours or so. Dull ache throughout the head (kind of a disoriented/fatigued/intoxicated type of feel to it). Occ have more pain/discomfort caudally near the base of the skull/neck.Generalized muscle pain - mainly neck, shoulders and back. Hyper sensitive to pressure or touch at several points on my body- neck, shoulder, lower back and elbows. Things that sit in my pants pockets seem to bother me- they can quickly make my whole leg ache.Sensitive stomach/ IBS - Have had a sensitive GI tract since I was very young- frequent bowel movements, diarrhea, urge to defecate. Stool is normal only about 1-2 x a week. I usually have a bowel movement 2 times a day, sometimes up to 4. Tingling/numbness in my left hand. Generally pinky and 2nd to last finger, but also felt in all fingers and thumb at times. Very sensitive medial aspect of left elbow. Muscle pain over top of forearm when having these other symptoms. An EMG was suggestive of mild pressure neuropathy in the elbow (cubital tunnel syndrome) and at the wrist (carpal tunnel). Vasovagal syncope w/ low blood pressure diagnosed 2 years ago. These symtopms affect my performance as a professional student and will continue to affect me as a professional in my career. I often times have no motivation to study/work, and my life revolves around my headache and arm pain 5/7 days of the week- it stops me from studying, it prevents me from starting to study, makes me very distracted and lack of focus while trying to study..I need help in piecing these symptoms together or what type of doctor to seek out to help me do this.My current neurologist has a tentative diagnosis of fibromyalgia, but doesnt seem very convinced (ie i had to press him to consider that the group of these symtopms are very similar to fibromyalgia, then he agreed after pressing him)- I have been on lyrica for about 1.5 yrs now with mild improvement. I also take tizanadine (mild muscle relaxant at night)My cardiologist just says that I will grow out of the syncope eventually and I am on fludrocortisoneI have been through multiple MRI, CT, cervical rads, EEG, all for my headacheHave been tested neg for gluten allergy and ANA.Have had a colonoscopy to help w/ GI issue diagnosis - all wnlMy father had diabetes and always complained of "being painful" but was never figured out/localized etc...My older half brother has been diagnosed w/ MSAn uncle has issues w/ cervical vertebraePlease help, I fear that my career is going to suffer if I dont get things figured out- I'll always be tired, unmotivated, thinking with a cloudy head from my headache, and be struggling through my day fighting off the fatigue and muscle pain. Thank you so very much for you time, I greatly greatly appreciate it.I have been through every symptom and test you mentioned, with no diagnosis. I get shots in my neck to relive the pain from my disc injuries and I take treximed for my migrains and it does help. I also take an antihistamine once in a while if my head feels fuzy like a dull feeling as if I can't concentrate. I also go to the chiropractor and get my neck cracked and he uses a tens unit on my back and neck. It's like electric stem therapy, it does not hurt. They accept insurance. My headach has disapeard for months now. The burning going down the leg from the butt area and not being able to cary anything in your pocket can be nerve damage like mine. You can get what is called a nerve ablazion from a spine surgion. It burns the nerve so you can't feel the pain. It works and it is worth the trouble but nerves grow back, so you will probably get it every six months. Insurance covers it. as for the carple tunnel mine came back after the sugery so I would just getting cortizone shots to relive the pain and wear something to keep my hand fingers or arm in a stretched position during the night. I also drink smooth move herbal tea regularly before bed instead of laxatives. GOOD LUCK!!!!!!
    Anonymous 42,789 Replies Flag this Response
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