Swollen Gums- no one can help!

I got EBV over 20 years ago and have had chronic fatigue since. Last year I got mono and was in bed for a year with the worst fatigue I've ever known. My eyes were red and burning, and were so dry nothing could alleviate them. My gums were uniformly swollen, as well as my lymph nodes in my face and neck. A few times I would seem to get better, only to end up sick again. Now I'm back to finding that my gums are swollen, as well as my lymph nodes, and the fatigue is back.

I have seen internists, endocrinologists, rheumatologists, oral hygienists, dentists, NDs, and periodontists, along with 2 GPs and no one can tell me what is causing this issue. At one point I tested positive for lupus but I don't have the rashes and other symptoms. I tested positive for Crohns but also don't have the symptoms.

I can't find anyone that can tell me what is wrong with me and what to do about it. But I've lost a lot of bone in my teeth and my perio is telling me I am at risk for losing teeth if this doesn't get cleared up soon. As it is, he's telling me I need bone grafts. I'm only 37!

Can anyone recommend a particular type of doctor that deals with this and what it might be? I can't find anyone that wants to take the time to really investigate this and help me. I don't want to lose my teeth by 40!

Thanks in advance.

Great advice on the mineral level check.

Lets start with the over obvious questions. You eat correct? You are not annorrexic? or balemic? You eat plenty of vitamin C and a well balance food plan.

Also have you seen a bone specialist? Don't know what they are called.

Seems you have something that is playing copycat with other diseases.

I recommend, a major, major hospital for diagnosis. Cleveland Clinic; John Hopkins; Mayo Clinic; etc... The expense will be worth it. Trust me.

Peace
Trina

Have you been to a major hospital that has resources to look into your unidentified condition?

It is sad that in 20 docs, not one recommend you see a diagnositic specialist.

Peace and strength
Trina

Welcome to the forum, it is nice to meet you. You have gotten some great advice & I hope you can find someone to help you find out what is going on medically with you. The only thing I can add is that swollen lymph nodes is a part of CFS. I have been dealing with this a lot lately, very sore lymph nodes in my arm, shoulder, arm pit area. I have been so fatigued lately too but that is just par for the course. I know how important it is to get an accurate diagnosis so you can proceed with living your life. Hang in there & keep us posted on how you are doing & if you are able to get into a specialist. Hugs, Denise

TerrieEllis, it sounds so horrible about your teeth, gums & jaw bone. I have never heard of this before but I hope you find your answers for it soon. Have you ever been tested for Sjogren's Syndrome? That is an auto immune disease that makes your eyes & mouth dry because your white blood cells destroy your moisture producing glands. Just a thought.

I really don't do too much for my CFS. I pace myself always & get as much sleep as I can. For sleep I take Trazadone to help me stay asleep & Tizanadine to help me go to sleep. I think coming to terms with this illness has helped quite a bit, once I decided that I was really sick, I let go of the stress of needing to be able to do things. People thought I should be able to pull it together & push through it, I thought the same thing but realizing that was not possible helped me let go of the stress of the should of's, could of's & would of's. I don't do anything that I don't have the energy for, I make limited future plans, usually only dr's appointments. I spend my time doing things I find enjoyable, if I am not crashing, for example I am making my granddaughter a crocheted afghan. I used to make jewelry but I became such a perfectionist with it, I was stressed out all of the time so I have had to quit that for now. At least until I can get back to the joy of it. One of the biggest things I did for myself was to get rid of the work clock I had in my head & let myself sleep until I woke up, no matter how long & whatever time I got up was okay. Hard one to do, I had everyones' idea of "go to bed at a decent time & get up at a decent time" drilled into me. Now, I can sleep anywhere from 12 hours to 24 hours, if I get up at 3:00a.m., that okay. My daughter & her two kids & I live together & they know how I am & we all deal with it. I love to visit with my family while I am up.

Not being able to work was a hard time for me but I am now on SS disability so I can stay home without worry. I tried to keep working but I just couldn't do it.

Take care & keep us posted on how you are doing. Hugs, Denise

Yes I have been tested for thyroid many times, along with a myriad of other tests. Both Chronic Fatigue Syndrome & Fibromyalgia affect sleep. I have times of insomnia & times when all I want to do is sleep. I, also, deal with depression, which at times makes me just want to sleep. Not so much anymore but my husband died 5 years ago & I was in mourning for a long time. I have found that not stressing about when I should go to bed, when I should get up, should I clean the house, etc, helps me to pace myself with no voices in my head that tell me I am wrong. When I came to terms with being ill & let go of all of the inner voices, I let the stress go. Now I can enjoy the time I am awake with no guilt. Being unable to work really sent me into depression & mourning, I love to work but now I just work differently.

I am glad you found some relief with the thyroid meds. Every bit of relief makes life that much better. lol. I hope you are doing well, let me know. Hugs, Denise

Problems with your gums could be the result of too much mercury in your mouth. That was my problem with bleeding gums. There was a detox program I followed to help with the problem and then I saw a mercury free dentist. I now have my health back.

Sounds to me like most of your issues are head related-gums-neck-pero (dental)
I never see anyone find a cure if they have root canals-plenty of serious docs think roo canals are the cor reason for many health issues-have you considered getting root of RC

I have had fatigue issues for years and haven't found any traditional docs very helpful. Including going to several major Midwestern clinics. The guy that helped me the most is an MD out of St. Louis. If money is an issue he works on Friday a month for free. He is an MD but he is considered alternative-he will check things other docs simply don't. My fatigue is 80% better since seeing him

I don't think we can promote a clinics here-I hope you find him