Bad bone pain HELP

I am 24 years old and for the last 2 years I have been experiencing horrible bone pain/aching. Not just one spot it jumps around.. One second its in my arms then my legs. I expressed to my primary doctor what I was going through and he seems to act as if he cared and wanted to get to the bottom of what was going on on but several Dr. visits later he gave up on me. They took gobs of blood and ran every test you could think of. I saw every type of specialist and they all just acted as if I was lying and wrote me off. I was extremely discouraged and gave up on trying to see what my problem was. The doctors almost convinced me I was crazy and making it up in my head. This was in 2013. Since then I still have had bone pain and can't seem to get a good nights rest. Tossing and turning and watching tv all night. Well a few weeks ago my husband and I went camping and I woke up to the worst bone pain in my right hip. It was so bad I was limping around and couldn't sleep. Since then its just gotten worse.. constant aching. Well I have started to see a new primary doctor and he wanted a fresh start with my blood work and test. So he ran some test which did include lyme disease and lupus. He said all my work came back fine however the Epstein barr panel was high. He stated that since I had mono when I was 15 years old it may have been reactive which is causing some bone pain. He told me he would like me to see a neurologist so I am now waiting to see that doctor next week. I feel horribly discouraged and sad. I feel like he too just wrote me off and doesn't believe the pain I am experiencing. He gave me a prescription for Tramdol which seems to do absolutely nothing. I layer around the house all weekend and didn't do anything. I have always been a very active social girl and my husband and I are always on the go so this has been very hard on both of us. He is sick of me complaining about my bones and I am tired of constantly aching... what is wrong with me??!! Is it possible I have something thats not showing in my blood work?? After doing my research everything points to Lymes disease but he said my blood work came back fine. Anyone out there pleeeasssee help.
Thank you

thank you for this information! I do see see many symptoms that I have... When I contact these specialist will they see me without a referral from my primary doctor?

Hi boneissues, So sorry to hear about the pain you are having. I know what that feels like, sometimes my thigh hurts so bad I could cry.

Regarding your doctor, the LLMD's don't need to have a referral because they are not in the insurance networks. So they do not take any insurance plans-- only private pay.

And like Traveler said the "standard" Lyme tests are not accurate so it is great that you will go to a LLMD. Keep in mind that many illnesses like Lyme, Lupus and others take awhile to diagnose.
Sometimes it takes years so keep on searching. And don't believe
it when a doctor tells you it is nothing.

Hi Boneissues

I had (and still have) bone pain for over 16yrs or so.

The pain was fading away the last few months because of taking LDN (Low Dose Naltrexone) that helps me with painmanagement. I have run out of it for 5 days now, and yestereday it started again...

Painmeds don't do much (if anything) about it. My experience is that you need to sit it out. Heat can help a little bit. And apparently LDN, I didn't expect that, but very glad it helped. I need to reorder the pills at my pharmacy...

Marie

Mono (which is caused by EBV - Epstein-Barr virus) can most definitely reactivate, although it doesn't cause bone pain. It causes exhaustion and possibly an enlarged spleen while the virus is active.

While most of our bone pain as Lyme patients is caused by the nerves that wrap around the bones, in very advanced cases sometimes Lyme can actually affect the bones themselves. Another reason to get anyone that is infected into treatments.

Oops spelling..meant *misconstrued

No problemo Traveler!...I just wanted to clarify ;-) I could see how it was a little confusing though!

orchid_rain said...
Hi boneissues, when you say bone pain...where do you mean? Like your joints (like knee's, elbows, wrists, shoulder , etc) or bone pain like your shin bone, rib bones, forearms, etc?

I had mono as a teen as well and I didnt not think it was likely to re-activate and cause bone pain.

Are you having any other symptoms? If so, what are you experiencing?

xx's-Courtney

Orchid_Rain my pain seems to be my bones. It jumps around from my arms to my legs, sometimes in my lower and upper back. I have to say though I have felt a horrible aching in my hips and ankles so I am not sure if its just affecting my bones. Its a constant dull aching and sharp pains - non stop it seems. I just wish it would go away. I have been up sine 3am today and had to go rest on my couch so my husband could sleep because my legs were aching so much. I do have painful bruising which I sometimes don't even know where they come from. I also have been having some hallucination episodes recently where I almost feel as if I was drugged. Another symptom I have been having is night sweats. I wake up horrible sweaty which has been happening more often recently. Thank you for the updated information and advice :)

a little update, I saw the neurologist today and left pretty discouraged. They performed a EMG which was beyond uncomfortable to see if I had any nerve damage. All came back fine so the neurologist is putting me on a anti-viral medication (because of the epstein barr blood results) to see if this helps with my bone pain. He refused to talk or acknowledge that my symptoms are similar very similar to l ymes disease. :(

I'm so sorry to hear that your pain is so overwhelming -- it truly is -- effecting your sleep and mobility and so many other aspects of life. I was recently diagnosed with Ankylosing Spondylitis which is a form of arthritis. It can effect many systems in your body and should be managed properly to avoid accelerated damage. I wish I had known about it many years ago when this first became a problem. I first chocked it up to Fibro and then Lyme. Perhaps you should consult a rheumatologist?

I am 24 years old and for the last 2 years I have been experiencing horrible bone pain/aching. Not just one spot it jumps around.. One second its in my arms then my legs. I expressed to my primary doctor what I was going through and he seems to act as if he cared and wanted to get to the bottom of what was going on on but several Dr. visits later he gave up on me. They took gobs of blood and ran every test you could think of. I saw every type of specialist and they all just acted as if I was lying and wrote me off. I was extremely discouraged and gave up on trying to see what my problem was. The doctors almost convinced me I was crazy and making it up in my head. This was in 2013. Since then I still have had bone pain and can't seem to get a good nights rest. Tossing and turning and watching tv all night. Well a few weeks ago my husband and I went camping and I woke up to the worst bone pain in my right hip. It was so bad I was limping around and couldn't sleep. Since then its just gotten worse.. constant aching. Well I have started to see a new primary doctor and he wanted a fresh start with my blood work and test. So he ran some test which did include lyme disease and lupus. He said all my work came back fine however the Epstein barr panel was high. He stated that since I had mono when I was 15 years old it may have been reactive which is causing some bone pain. He told me he would like me to see a neurologist so I am now waiting to see that doctor next week. I feel horribly discouraged and sad. I feel like he too just wrote me off and doesn't believe the pain I am experiencing. He gave me a prescription for Tramdol which seems to do absolutely nothing. I layer around the house all weekend and didn't do anything. I have always been a very active social girl and my husband and I are always on the go so this has been very hard on both of us. He is sick of me complaining about my bones and I am tired of constantly aching... what is wrong with me??!! Is it possible I have something thats not showing in my blood work?? After doing my research everything points to Lymes disease but he said my blood work came back fine. Anyone out there pleeeasssee help.
Thank you

Our daughter's bone pain was caused by bartonella infection. These bacteria prefer endothelial tissue and bone marrow (See Buhner's coinfections book on bartonella and mycoplasma). Her pain was intermittent and fairly severe. It would jump from place to place as well, never lasting for more than a minute or 2.

Although she was still experiencing this pain after 2 years of abx treatment for bartonella, especially during strenuous exercise (she is a Celtic dancer - think RiverDance) she is now completely asymptomatic after 1 year of Buhner's Full bartonella protocol at low (1/4 of that recommended by Buhner) dosages.

{{ LOL @Traveler "ole lymie brain"! }}

RE Boneissues: what others stated above said sounds right....def sound like some lyme symptoms... and ALL symptoms you have described I have experienced (minus the night sweats-I have day sweats)....but I do know the night sweats are the hallmark symptom of the co-infection babesia with lyme. I also got bruises that would pop up from nowhere in the beginning of my illness but I dont seem to get them anymore.

It would be ideal if you made an appt. to see an llmd as soon as possible as the sooner you can get treatment, the better.

I hope you find some relief and feel better soon

xx's-Courtney

Bruises can be from a Vitamin K deficiency.