"Bone pain", muscle pain, fatigued

[Unregistered]

Thank you for your response. I went to see a Rhuematologist yesterday. He thinks that my symptoms are to wide spread and I don't get any relife with Vicodan and percocet so he thinks it might be a nervous system problem and is going to refer me to Nuerologist. I have sharp pins and needles feeling in my feet,legs, and around my spine. I have also had changes in my mental status I am confused sometimes and forget things. I was curious if you had these symptoms with FMS.

I am a Registered nurse...you have some symptoms of multiple sclerosis. The neurologist should be able to determine. Good luck.

[Unregistered]

Its pretty bad that people have to turn to the internet to find out what is wrong with them. I myself have been having the same issues since I was nineteen, i am now twenty two. It seems as if it is getting worse for me. I now landed a job assisting this famous stylist that has done movies/vogue/etc. I will be having to work 14 hours a day, and some days I just can't get out of bed. But it still doesn't stop me from living the life that I want to live. i AM not dead yet, so I refuse to act like i am. I have no health insurance. I've been to numerous Emergency rooms cause I thought I was dying/fed up and wanted answers. I paid 1,000 dollars out of pocket for blood work, only from them to tell me I was "normal", but relooked my results and I was flagged high in having H. PYLORI, and EB VIRUS. As I said before, It sucks that the doctors now a days don't really care, and you have to turn to the internet where you have 1000000000 different people telling you different things. I know they are trying to help- but doctors need to care more and not just throw in the towel and say "you are normal" and collect your money.

[taniaaust1]

Viruses such as HHV6 and cytomegleo can be much more debilitating than EB.

I'd like to say that when I had EBV I couldnt have been much more debilitated than I was. I ended up in bed for 10 weeks with a sky high fever (it got up to 41% celicus, I was almost having seizures due to the EBV and the temperature it caused). I was fainting due to the EBV and the temperature I had, confused due to the fever. On top of that to eat any solid food was like swallowing razor blades so I couldnt even eat (on was on yogurt and liquid diet for 10 weeks, even that hurt a lot). I was EXTREMELY ill and probably should of been in hospital.

Testing has also shown that Ive had CMV/cytomegleo (also toxoplasmosis) at some point, but Im not even aware when I had that. (thou i guess i could of had that on one of the many times ive been ill.. but no virus ive had has been as bad as When I had the EBV/mono).
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To the original poster.. I hope you had your D levels checked.

CFS CAN BE triggered by EBV. Studies have shown that EBV "triggers" about 10% of cases of EBV. (quite a few illnesses and things trigger of CFS.. even fluroide overdose has triggered it in some). In CFS "something" (or many things) has caused something to go wrong with our body.
.........

I thought there was treatment for EBV if it's active.

[Unregistered]

I think my doctors have given up on me. I have no motivation, not depressed, bone ache, muscle pain, to the point of debilitation. I've had my blood and urine tested dozens of times, have heard the word "normal" until I'm sick of it; have been diagnosed with low blood pressure, the result of overmeds for high BP earlier; have actually had Dengue fever about 2 years ago, often feel like I did then, but no fever; arthritis, don't think so, have no joint pain; depression, have taken meds for "anxiety", but don't have the symptoms of depression; gout, taken the meds; the latest is Epstein-Barr. Have had constant body pain for about 5 years. Had spinal fusion about 10 years ago - L4-L5-S1. Height, 5-10; weight, about 190; 62 years old. Apparently, there is no treatment for Epstein-Barr, so they want to treat the symptoms. They tell me that EB often causes chronic fatigue syndrome, and is very similar to chronic mononucleosis. I don't really believe it. Have taken more vitamins than I care to list, including high doses of magnesium oxide, St. John's wort, tons of vitamin C, have also gone for months with no vitamins at all. No apparent difference. Am apparently allergic to fluoride, as in toothpaste. Causes multiple sores on my gums and inner cheeks, and edema of the jaw and tongue. Would someone please tell me what the heck is wrong with me? Am I nuts? That seems to be about the only available illness remaining.

Please be tested for Lyme Disease right away! I've had all your symptoms for years and was finally tested positive for Lyme. My doctor and I were blown away, for I never saw a tick or the typical bullseye rash. I HIGHLY recommend everyone become familiar wth this disease and the misinformation out there: 1) First off, you don't need to go hiking in the woods to be bit by a tick, and they can be in your own backyard, ballfields, etc. 2) Almost all states have reported Lyme, and you can't rely on the CDC's underreporting (According to them, Virginia Beach has few cases, but many locals tell of knowing somebody here who has contracted Lyme, and our newspaper has confirmed the disease is spreading and multiplying here.). I urge everybody to become aware of this terrible disease that can mimick many other diseases, including autoimmune diseases, gastrointestinal disorders, and heart problems. Furthermore consult the ILADS website because many doctors who aren't familiar with Lyme don't know which tests to order or how to properly treat this tricky disease.
Best of luck, and don't ever give up on trying to find answers!

[Unregistered]

I dont know about the floride, but have you considered Vitamin D, in 50,000IU/wk for 8 weeks? This has helped with some of my bone pain. Also there is something called Ankylosing Spondylitis which is a form of arthritis? Another option is Fibromyalgia..
These are the things that I am investigating for similar health issue.
Hope this helps!

[Unregistered]

Thank you for your response. I went to see a Rhuematologist yesterday. He thinks that my symptoms are to wide spread and I don't get any relife with Vicodan and percocet so he thinks it might be a nervous system problem and is going to refer me to Nuerologist. I have sharp pins and needles feeling in my feet,legs, and around my spine. I have also had changes in my mental status I am confused sometimes and forget things. I was curious if you had these symptoms with FMS.

I don't know if since this last post you may have figured your problem out...but recently I learned about the rare disease called LCH...all the symptoms are as you have mentioned. I have a friend with the same symptoms and is heading into the doctor to ask questions. It can attack just like cancer, treatment may require Chemo...apparently the "GOOD" cells attack areas of the body for unknown reasons and can cause tremendous havoc on your body, including actually eating away at your bones causing actual "missing bones". Just FYI...Wish you the best. Keep me posted. Would like to know if you already found an answer.
Thanks

[beentheredonethat]

I think my doctors have given up on me. I have no motivation, not depressed, bone ache, muscle pain, to the point of debilitation. I've had my blood and urine tested dozens of times, have heard the word "normal" until I'm sick of it; have been diagnosed with low blood pressure, the result of overmeds for high BP earlier; have actually had Dengue fever about 2 years ago, often feel like I did then, but no fever; arthritis, don't think so, have no joint pain; depression, have taken meds for "anxiety", but don't have the symptoms of depression; gout, taken the meds; the latest is Epstein-Barr. Have had constant body pain for about 5 years. Had spinal fusion about 10 years ago - L4-L5-S1. Height, 5-10; weight, about 190; 62 years old. Apparently, there is no treatment for Epstein-Barr, so they want to treat the symptoms. They tell me that EB often causes chronic fatigue syndrome, and is very similar to chronic mononucleosis. I don't really believe it. Have taken more vitamins than I care to list, including high doses of magnesium oxide, St. John's wort, tons of vitamin C, have also gone for months with no vitamins at all. No apparent difference. Am apparently allergic to fluoride, as in toothpaste. Causes multiple sores on my gums and inner cheeks, and edema of the jaw and tongue. Would someone please tell me what the heck is wrong with me? Am I nuts? That seems to be about the only available illness remaining.

I was very ill with your symptoms for seven years except my pain was muscle and not bone, which you could be confusing for muscle pain, Ask your Dr to do a sed rate and a test for rhematoid arth...the arthritis yesy should be neg and the sed rate should be elevated... I got so bad before I was diagnosed that could not even roll over in bed, had to get out of bed and back in to change positions.. My disease is called PolymyalgiaRheumatica PMR efffects the muscles of the body The only treatment is Prednisone within 12 hours of starting treatment all my pain was gone It is a shame that I had to waste seven years of my life being almost disabled and depressed to the point that I thought I could not make it another day until I walked into the right Dr's office and he told me in 5 minutes what was wrong with me He commented that the right blood tests had been repeatedly done for 5 years but the Drs that I had seen just did not know how to diagnosis me.. Also I have been a nurse for 30 years and you would have thought that I could have been more persistent and made that happen, but I know now that it is the squeaky wheel that gets the grease Good luck to you in your quest for better health

[Unregistered]

[
I have Lupus and Hypothroidism.Could be a combonation of the 2 conditions.I have been in constant pain since I was a freshmen in high school,and I am now 50 years.This is just a thought.

[Unregistered]

I think my doctors have given up on me. I have no motivation, not depressed, bone ache, muscle pain, to the point of debilitation. I've had my blood and urine tested dozens of times, have heard the word "normal" until I'm sick of it; have been diagnosed with low blood pressure, the result of overmeds for high BP earlier; have actually had Dengue fever about 2 years ago, often feel like I did then, but no fever; arthritis, don't think so, have no joint pain; depression, have taken meds for "anxiety", but don't have the symptoms of depression; gout, taken the meds; the latest is Epstein-Barr. Have had constant body pain for about 5 years. Had spinal fusion about 10 years ago - L4-L5-S1. Height, 5-10; weight, about 190; 62 years old. Apparently, there is no treatment for Epstein-Barr, so they want to treat the symptoms. They tell me that EB often causes chronic fatigue syndrome, and is very similar to chronic mononucleosis. I don't really believe it. Have taken more vitamins than I care to list, including high doses of magnesium oxide, St. John's wort, tons of vitamin C, have also gone for months with no vitamins at all. No apparent difference. Am apparently allergic to fluoride, as in toothpaste. Causes multiple sores on my gums and inner cheeks, and edema of the jaw and tongue. Would someone please tell me what the heck is wrong with me? Am I nuts? That seems to be about the only available illness remaining.

Have you tried a Selective Serotonin Re-uptake Inhibitor? Elavil, Lyrica and others (some are classed as anti-depressants because depression is usually caused chemically by low serotonin and/or nor-epinephrine) are drugs used to treat Serotonin Re-uptake Disorder - my name for it because there is no name ... yet. I had chronic fatigue, fibromyalgia, IBS, osteoarthritis, migraines. Notice I didn't list depression because I got upset on the days of each week that I felt terrible, but otherwise I didn't deal with depression. Last August I started taking Elavil at it's lowest recommended dosage. Within 2 weeks the migraines stopped. Within one month the muscle aches were subsiding and so was the IBS. It's been miraculous! My problem stemmed from not only my brain re-uptaking serotonin that had been released to elsewhere in my body but also not enough production of serotonin. So I eat some turkey everyday, take 5-HTP to help with metabolizing the Tryptophan and the Elavil which tells my brain to release the serotonin I've got to all parts of my body. If I don't eat enough turkey every week the fibromyalgia acts up, but nothing else. I stumbled on your site here by accident but I sure hope you try this therapy. Just start a search on the internet for Fibromyalgia and the links to IBS and serotonin levels. Take them to your doctor and share how the therapy is helping me. GOD bless!

[Unregistered]

oh my. I see you are suffering. I know because I seem to have similiar symptoms. I take ultram. Two in the morning. it is the topchoice for me as I have tried everything and spent a lot if money for doctors to say I am healthy as a horse. I am an RN. Have seen this also in clinical environment. U do need a prescrption for it. Oh and please for your sake, ask the Doc . What do u think about ultram, .or tramadol. Ask for generic is about twelve dollars for a month. Your doc will be a genius. Take it with caffiene. My opinion fibromyalia is worse whem you allow your muscles to weaken by giving into the pain. Ultram makes me feel like doing normal activities. But dont overdue it when u get better. I gave a tendency to