Swollen Gums- no one can help!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

TerriEllis
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/21/2015 3:34 PM (GMT -7)   
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.

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 1/21/2015 7:08 PM (GMT -7)   
Have you had your vitamin and mineral levels checked? Sometimes deficiencies have symptoms like that.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7174
   Posted 1/22/2015 6:44 AM (GMT -7)   
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
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Post Edited (BnotAfraid) : 1/22/2015 6:50:56 AM (GMT-7)


TerriEllis
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/22/2015 11:53 PM (GMT -7)   
Thank you for your responses. I take a great deal of vitamins and minerals. I like the raw supplements from Garden of Life Vitamin code. I eat well and balanced. I had a deep cleaning with lasers and antibiotics and it's still getting worse quite fast. I just found out today that my thyroid is enlarged, and I have to have an MRI done on it.

But I've seen over 20 doctors in the past year and no one can tell me what is wrong with me.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7174
   Posted 1/23/2015 9:53 AM (GMT -7)   
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
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

TerriEllis
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/25/2015 3:01 PM (GMT -7)   
I am on Medicare/ MediCal. I'm not sure there are diagnostic specialists that would see me. Do you have any more information on this? I've never actually heard of this. I wish my doctors would have recommended this. They've been telling me I had to "ride it out" for years, and I've literally spent the last year in bed with fatigue so extreme, I was confined there.

None of these doctors seems to care. I'm becoming very depressed as I'm watching my life just fade away.

Thanks for this wonderful advice. I'll try to find out more about it.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/27/2015 9:53 PM (GMT -7)   
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
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

TerriEllis
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/28/2015 3:33 PM (GMT -7)   
Thank you JL! Can you tell me what you do for your CFS? Have you ever had swollen gums?

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/30/2015 2:37 AM (GMT -7)   
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
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

TerriEllis
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/30/2015 1:44 PM (GMT -7)   
My mouth isn't dry at all. I don't think that's the case. But I'll talk to my doctor.

Have you been tested for thyroid? The tests don't adequately reflect what is happening with the thyroid. I was tested normal for years and had all the symptoms of hypothyroidism. Now that I told my doctor I wanted to move to Oregon and be mercy killed, he takes me seriously and tried me on levothyroxin and the difference it has made is staggering! I am falling asleep without Xanax for the first time in years. I'm waking up at 9-10, not 1-3! I get 7-8 hours of sleep instead of 12. I'm thinking clearly and functioning. I have a lot more energy. I'm not depressed or anxious like before. Everything has gotten so much better.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 2/1/2015 4:03 AM (GMT -7)   
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
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 2/2/2015 1:55 PM (GMT -7)   
Are you a smoker? Cigarette smoking can lead to really bad periodontal disease really quickly because of the constant irritation to the mucus membranes in your mouth.
Thyroid forum moderator

Ulcerative colitis; 8th year of remission with Remicade. Inflammatory osteoarthritis; osteonecrosis from steroids. Grave's disease post-RAI and now on Levothyroxine. Type II diabetes induced by steroids.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 3/4/2015 8:08 AM (GMT -7)   
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.

Dancing Dawn
Regular Member


Date Joined Feb 2015
Total Posts : 87
   Posted 3/27/2015 7:08 PM (GMT -7)   
I had my mercury fillings removed. That's a big undertaking. It
helps if you find a biological dentist and are tested for mercury.
That could be one cause. Also, Lyme disease can effect people's
teeth. But diet and so many other things enter in like people
here have pointed out. Good wishes
with finding someone who can help you and I hope you feel
better very soon.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 944
   Posted 3/27/2015 7:50 PM (GMT -7)   
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

hope4
Regular Member


Date Joined Sep 2007
Total Posts : 337
   Posted 3/29/2015 2:17 PM (GMT -7)   
I don't know if we can mention brands, but Biotene products helped me a lot. Also close attention to flossing, ( I am sure you already do that), and oddly enough not eating foods that are sweet and can stuck between my teeth, such as granola.
Has your dentists ever inserted some type of antibiotic in your gum? Sorry I can't remember the name of the product. It helped me "break the cycle" of infections.
Hope

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 944
   Posted 3/29/2015 3:00 PM (GMT -7)   
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

alphabet soup
New Member


Date Joined Mar 2015
Total Posts : 3
   Posted 3/29/2015 3:20 PM (GMT -7)   
hello. I see here sooo many issues that other people who are ill do not have. I have CFS, fibro, IBS/C, stomach issues, sleep issues. I am glad to be here and have a question for anyone out there that might have an answer. I do not like to eat, I have no real appetite and what I do eat, sticks in my throat. I have had all the drs. there are out there and all the tests that I can stand, I have been dealing with this since 1977 and got a name for it somewhere in 2000's.?! I was fortunate enough to have found out from a lupus specialist in Pitts that I did not have lupus, which I lost two maternal aunts to. Ok back to eating, does anyone know of the BEST substitute drink alternative. I try to take something in when I take one of my 10 pills a day (down from 15 pills)
about your teeth my friend, one thing I found out with my teeth pain was that I had sinus issues (always have) but they were pushing on the fibro nerves and causing a lot more pain than they should have. Tried getting them pulled out and the one tooth, literally, the dentist was up in the chair pulling and ended up cutting it out. It was a mistake on my part. Can't help you with the loss of gums.
Thank you for sharing on this site. It makes me feel not so alone with all this stuff.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 12, 2017 1:58 AM (GMT -7)
There are a total of 2,904,291 posts in 318,742 threads.
View Active Threads


Who's Online
This forum has 158129 registered members. Please welcome our newest member, Luna1969.
220 Guest(s), 1 Registered Member(s) are currently online.  Details
Hibee