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-   -   Fibromyalgia, TMJ and Lupus (http://www.healthboards.com/boards/fibromyalgia/52915-fibromyalgia-tmj-lupus.html)

RhondaG 09-08-2001 04:50 PM

Fibromyalgia, TMJ and Lupus
 
How many of you have been diagnosed with

Fibromyalgia
TMJ Disorder
Migraine headaches
and LUPUS?

------------------
Rhonda

Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

cathy i 09-08-2001 09:15 PM

HI, if you have been diagnosed w/ all of those, I think you should get checked for lyme disease. perhaps all of your problems are caused by Lyme. keep in mind that there are a lof of false negatives. this can be treaed w/ antibiotics (long term). good luck to you. cathy i

cioc1212 09-10-2001 01:18 PM

Negative for Lupus, positive on the rest. A good part of my headaches were caused by an Arnold Chiari Malformation.

dawn2 09-14-2001 05:16 AM

Rhonda:
Was diagnosed with fibro about a month ago. I also have migraine headaches and regular headaches often. Saw my dentist last week, diagnosed with TMJ. He said TMJ is often related to headaches and migraines. At least that's what he feels is causing my headaches. Dawn

RhondaG 09-14-2001 05:04 PM

I'm not surprised to hear that you, too, have had some similar diagnoses. Do you understand how the 3 diagnoses relate?

Systemic Lupus, Fibromyalgia are both auto-immune disorders. They tend to go hand-in-hand. The TMJ occurs quite frequently in Fibromyalgia patients!

How are you dealing with the TMJ and migraine headaches? What medication have they prescribed for you? How are they treating the TMJ?

------------------
Rhonda

Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

dawn2 09-15-2001 04:45 AM

Rhonda:
The last 3 years each time I got a cold, I would go into a migraine....this last winter, the migraine lasted 2 1/2 months and I went to 14 doc visits, 2 emergency room visits, and 3 cat scans to no avail. Finally, I was diagnosed with fibro/myofacial about 2 months ago. In the meantime, no one could explain this problem when I get a cold or the frequent headaches. Reading these boards and getting some great advice, I pursued the pain and it's cause. I suspected the tmj because of the frequency of myofacial and tmj. As I was just diagnosed with this tmj, I plan on having a prescription in hand from my neurologist for maxalt (a med that helps stop the migraine) and another prescription for the migraine. I do not know the link between fibro and lupus but know it's common too. I hope in our lifetime, we find some answers to these diseases. Dawn

cioc1212 09-16-2001 06:01 PM

If you have headaches, make SURE you have head and neck MRI's done. It is VERY VERY important!!!! Also complete bloodwork and get copies of all your tests. Don't rely on your doctors to do what you need, you need to be your own advocate and push for good medical care! I went for 20 years with some very SERIOUS medical problems, no one cared enough to listen and believe in me!

Daisy03 07-01-2011 08:25 PM

Re: Fibromyalgia, TMJ and Lupus
 
I have been diagnosed with all of the above and then some (Fibro, severe TMJ, spondlarthrothopy, psoriatic arthritis, sacrililiitis, migraines, lupus, etc). Severe pain all over primariliy in joints, muscles. It is difficult to walk, stand, sit, you name it I have a hard time doing it for long periods of time due to pain levels and fatigue. We are still trying to sort through all of this. Any helpful advice?

lobolee 07-01-2011 09:23 PM

Re: Fibromyalgia, TMJ and Lupus
 
[QUOTE=RhondaG;283450]How many of you have been diagnosed with

Fibromyalgia
TMJ Disorder
Migraine headaches
and LUPUS?

------------------
Rhonda

Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."[/QUOTE]

That is an interesting question. I hope you get lots of feedback. Having all those conditions myself it would be interesting to find the commonalities by those of us with this combo. I have a couple of theories after years of research and contact with those in the field of such research. :wave:

lobolee 07-01-2011 11:00 PM

Re: Fibromyalgia, TMJ and Lupus
 
[QUOTE=lobolee;4790851]That is an interesting question. I hope you get lots of feedback. Having all those conditions myself it would be interesting to find the commonalities by those of us with this combo. I have a couple of theories after years of research and contact with those in the field of such research. :wave:[/QUOTE]

Fibromyalgia
TMJ Disorder
Migraine headaches
Lupus

Also irritable bowel syndrome (which is common with fibro), bleeding ulcers of the stomach, low thyroid, ect. The migraines started in very early childhood. TMJ started in 1978. Lupus and fibro diagnosed in 1988 but had symptoms for a several years before the dx. Osteoarthritis of the cervical spine began problematic starting when 1975.

Daisy03 07-03-2011 06:24 AM

Re: Fibromyalgia, TMJ and Lupus
 
WOW! I see a lot of commonalities. I am so glad I found this site! I started with the migraines first early on. Then really bad jaw pain especially on my left side, but MRI showed both sides real awful. Insurance denied TMJ surgery and all I wanted was to fix the left painful side. 8months later trying to fight insurance the pain was much worse...I could not open, eat, talk etc. We had no choice but to go in and look the disc over. Turns out my disc developed a hole and my jaw bones became lodged in that hole somehow, creating the intense pain I was feeling.

I then came down with all of this arthritis throughout my entire body. I can't walk, drive, and I am in a lot of pain all over. I was diagnosed with all of these things (spondolarthrothopy, psoriatic arthritis and fibromyalgia) based on blood work and MRI and started on REMICAIDE. I come to find out I may have tested positive for lupus back in April prior to REMICAIDE and test positive for it again now. That would mean I should never have been on this medication! I still have fibro they think. I am not sure what they think anymore, but I have two very different opinions going on, and I am so confused. ANother family Dr says I should be tested for Lyme. I have been bittem by ticks not that long ago prior to all of this. Not a bad idea since nobody can come to a conclusion.

Sorry for the long post...it just gets frustrating putting all of your trust in Dr's and thinking you are on the right path only to find out you may be back to square one. I thought I would be returning to work when we sarted again in August, but I am still no better when I left them in Feb.

Thank you for all of the advice on here! It is wonderful....we have requested all of my medical records from all of the Dr's!

lobolee 07-03-2011 10:59 AM

Re: Fibromyalgia, TMJ and Lupus
 
[QUOTE=RhondaG;283454]I'm not surprised to hear that you, too, have had some similar diagnoses. Do you understand how the 3 diagnoses relate?

Systemic Lupus, Fibromyalgia are both auto-immune disorders. They tend to go hand-in-hand. The TMJ occurs quite frequently in Fibromyalgia patients!

How are you dealing with the TMJ and migraine headaches? What medication have they prescribed for you? How are they treating the TMJ?

------------------
Rhonda

Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."[/QUOTE]

Yes I do know that these things are related. I had surgery to correct the TMJ about 15 yrs ago. Prior to surgery I had gotten so bad that I could not talk, eat or even hear certain sounds. I had to walk out of the church whenever they were singing because the pain was unbearable. So the surgery was a great success.

As for migraines the list of things tried is very long. Right now I am seeing a neuro who wants to do botox injections. I am wondering how successful the injections are for those who have had them. I take antihistimes and nasal licocaine for them now with some good results. Since I cut out diet cokes the number of headaches and the intensity of them has decreased.

lobolee

Daisy03 07-03-2011 12:19 PM

Re: Fibromyalgia, TMJ and Lupus
 
Should I test for Lyme disease, since I have come down with all of these things and am beginning to be diagnosed with them?

Someone suggested seeing an infectious disease Dr to rule that out before going on anymore treatment plans, since someone may have already missed some things?

lobolee 07-03-2011 12:57 PM

Re: Fibromyalgia, TMJ and Lupus
 
[QUOTE=Daisy03;4791725]Should I test for Lyme disease, since I have come down with all of these things and am beginning to be diagnosed with them?

Someone suggested seeing an infectious disease Dr to rule that out before going on anymore treatment plans, since someone may have already missed some things?[/QUOTE]

Hi Daisy,

Yes get Lyme ruled out. It is one of the things you should not wait to tested as more damage can occur with time.

Do you have mercury-amalgam (silver) dental fillings? I can trace back to the beginning of my health decline to early childhood and fillings. Also I had DDT poisoning which nearly killed me. DDT is a pesticide no longer legal in this country. Then I had full blown Mad Hatter's syndrome in the 1990s. This caused multiple daily seizures and hallucinations. Once the amalgams were removed[U][I] safely[/I][/U] the seizures decreased and finally stopped. My coordination returned and no more hallucinations.

I think these blows to my immune system early on tipped the scale that caused this host of ailments to take hold. It would be interesting to know how many others with all these health issues also had similar environmental traumas. From what I have been able to glean so far it seems very likely that things happened to us. It would be interesting to know if anyone who has never had "silver" fillings has autoimmune disorders. I know that lupus was not identified in this country until after dentist in this country began using mercury amalgam. It was 1833 when dentists here started to use mercury amalgam that was then called quicksilver from Germany and those who used it were called "quacks" until around 1900 when it was decided to use amalgams as they were so much cheaper than gold fillings.

Daisy03 07-03-2011 05:40 PM

Re: Fibromyalgia, TMJ and Lupus
 
Thank you for sharing that with us! I appreciate the advice and all of the information! I will definitely be looking into and taking charge more with these Dr's! Your help has been wonderful! Will keep you posted as I get more info : )


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