I am so glad I found this site because I know my family is sick of hearing me talk about all the crazy things going wrong with my body. At least I can write it out whether anyone wants to listen or not. I really don't want to be a burden I just want to feel better. So hear is my question: I thought that fibromyalgia was something the doctors made up for people who were depressed and couldnt find anything else wrong with them, as I read further I am finding out that this is not true. I am not sure if it falls under an autoimmune disease or a neurological disease. Maybe both. I live in NE ohio and the weather is now cold which has made my symptoms so much worse. My dry eyes can be very apinful and by evening I cannot even watch tv with my husband anymore,, all i want to do is close my eyes because they hurt so bad. I have felt bad for so long that I am truly thinking about leaving my husband,, taking my daughter with me, of course, because,, I can't keep up with life anymore,, I work full time and have a husband , a teenage daughter, and 2 step children. This has gotten so bad I think it is time to downsize my life. Oh geez, i guess I got off topic, sorry, if anyone can fill me in on the fibromyalgia and if people with FM have Sjogren's
Thanks for reading and listening,
Teresa
Hi Teresa :)
I think that fibromyalgia is a set of symptoms that, as yet, have no definitive mediacl reason. There are no blood tests or biopsies for it. You're correct in thinking that it's not psychosomatic though. It is real enough - and painful.
It seems to go along with several autoimmune conditions but it can occur without them and isn't autoimmune itself. maybe one day a test will be developed that says otherwise - but not yet.
Sjogren's can cause a lot of the same symptoms as fibromyalgia.
I think you need to talk things over with your doctor, or a counsellor and let them know exactly how bad you are feeling. make sure your thyroid is not tied up with these feelings. It can go wrong and spiral you inro fatigue and depression too. Maybe anti depressants would help. I'm on a low dose of Amitriptyline because it helps with nerve pain.
You also really need to see an opthamologist to try and get some eye relief.
Take care - Scottie :)
Hi Teresa
Sorry can't help with the FM thing as it's not something I'm familiar with. However I think you really need some time out to come to terms with your illness as it sounds like you're really stressed with things at the moment. Don't apologise for going off topic - sounds like you just need to let off a little steam - and don't forget we're here to help if we can.
Take care and let us know how you are getting on.
Wen x
Thank You very much for responding. The first person I saw was my opthamologist, My eyes were inflamed from the dryness so he put me on Zylet for about 3 week and then inserted punctal plugs. My eyes are not all that much better. I then started developing pain just below my ears, I finally was so miserable I called my doctor and he is running some blood work but nothing conclusive. I have been on an antidepressant for over 3 years. I have dealt with the pain for years but the stiffness is worse and the pain is getting worse, it seems to coorelate with fatigue and dry eyes. I now have an appointment with a rheumotologist but not until December first. I know it takes forever to get into see one so a couple of week wait really isnt too long,, it just seems that way when you are in pain. My Sed rate came back within normal range so i doubt if i have RA or lupus. I heard that pretty much rules out inflammation in the body. I did, have a vitamin D deficiency but I believe that is under control.
Thanks Again
Teresa
Hi Teresa:
I am sorry you are feeling so badly - I hope your rheumy appointment goes well.
There is a website called The Dry Eye Zone with lots of great information and products for dry eye, see http://www.dryeyezone.com/
Here is an interesting article about treating dry eye: http://findarticles.com/p/articles/mi_qa3921/is_200602/ai_n17169788/pg_1?tag=artBody;col1
Here is a book that comes highly recommended by other dry eye sufferers, but I myself have to confess I've never read it:
http://search.barnesandnoble.com/Dry-Eye-Remedy/Robert-MD-Latkany/e/9781578262427#EXC
If the pain, stiffness, fatigue, pain below your ears (possibly from swollen salivary glands) is Sjogrens, the rheumy can give you Plaquenil which has helped many forum members with the stiffness and fatigue.
Hugs,
Sue
Teresa,
First, I am so sorry you are feeling so badly. I have FM, too. And it can be very debilitating. Currently, I am receiving disability for FM through teacher retirement.
Not being able to work means you lose your insurance. Think again about leaving your DH. Does he carry insurance that you might need?
If you truly are ready to call it quits, that's a different story. But leaving because the demands of a big family are too much is something to think really hard about. Hopefully, he will pitch in to help you. I don't cook dinner, do a little cleaning, and spend as much time in bed as I need. Quitting my job was hard...thank goodness for DH's insurance. He's great to help out and cook. He doesn't clean but he's a great guy and I'm lucky to have him. :)
Sounds like you've already done a lot of reding on FM. There are many websites, too. Some call it the "wastebasket" diagnosis. When people KNOW someone who is suffering, they finally see that it is real and it is painful.
Good luck and I hope you are feeling better asap. Tinker
I have both sjogren's and fibromyalgia. It is real, and causes me a lot of pain with my muscles, and hurting flesh. That's how it feels. My husband can give me a massage even down my arms and though I feel the soreness , it still feels so good, because it feels like he is moving the toxins around . I take ibuprophen , and also mobic for inflammation, but not the same day. I rub biotene on my sore muscles.
I sometimes just have to lay down, because I ache and it helps to stretch out in a cool room. I can have a low temperature and hot skin. I have all the pressure point pains, and stiffness.
I hope you get the help you need. Hang in there.
susanep :)
Susan,
You rub biotene on sore muscles? I thought it was just the mouthwash and toothpaste , and mouth gel.
TY Tinker
Hi Teresa!
I'm another lucky one who has both sjogrens and fibro. I always describe my sjogrens as the one that makes my joints hurt and the fibro makes the soft tissue areas (pressure points) hurt, but sometimes they all run together and I don't what causes what....all I know is I am in pain and that Fibro is a very painful thing to deal with and is definitely not in your head, although you do still run into people that think that way!
Please talk to your doctor about your pain and maybe even suggest Physical Therapy or a pain clinic. PT helped me when some of my fibro pain became too much. A heated therapy pool (or even just doing water exercises) is also highly recommended for people with fibro. I also have a TENS unit to help with some of the pain especially with my lower back or hips. It does help when used along with ice for me.
Good luck to you...please let us know if you find something that gives you some relief.
TINKER.....I think Susan may have meant Biofreeze which is used for sore muscles. Hopefully she will come back and answer your question! :)
From what I read up to half of the Sjogren's patients also have fibromyalgia....which is all over pain. I am a nurse and had gone to a couple of general internal medicine doctors who both admitted that they knew almost nothing about autoimmune diseases. When I went to the first one telling him that I hurt all over all the time he only did blood tests to check for autoimmune diseases after I told him I had an aunt that died at 49 from lupus. He then told me he had to go look up which blood lab tests in a book
to order to test for autoimme diseases. The ANA came back positive and then my insurance changed and when I went to another general doctor she had to look up the tests to do them again to reconfirm the diagnosis and then when the results came back she said to go to a Rhematologist. Both general doctors also said that they didn't know much about fibromyalgia, and even the Rhemy did not know about how to diagnose it and was not sure about the cause or testing tender points, or if the tender point tests were valid. Finally the rhemy diagnosed the SS and put me on lyrica and said I only needed to try plaquinil if I wanted to. Lesley
My rhuemy said that a lot of the time, Fibromyalgia occurs when someone goes from being really active to almost no activity in not too long of a time. I was told that i have it along with my sjogrens and rhumatoid arthritis. It does kinda make sense in my case because when I was really young and up till 8th grade I was always active. I was a competitive runner in long and short distances as well as a competitive swimmer and horseback rider. It seemed like I was always moving. But as I got in to high school, I dropped the swimming and riding because I was riding and not in marching band which took a lot of time. 9th grade is when I first started feeling abnormally tired and I also started getting my swollen glands and as a result, I even started to not ride my horses as much anymore which is my passion. I couldnt figure out what was going on because I really wanted to ride, I just had absolutely no energy after school so go do so. It was really hard for me because my parents just called me lazy and said that I have no ambition. I couldnt even describe to them how I felt. I finally started doing medical testing in 11th grade but nothing was found until this past summer when I decided to do as many tests as I needed to find the cause and in September I was diagnosed with those 3 things. I'm 19 now, and in my 2nd year of college. It took 3 years to be diagnosed..
but anyway, my theory, in my case, is that the fatigue from the Sjogrens caused me to become less active which caused the Fibromyalgia... Now, I could be completely wrong, but I feel like thats what happened in my case... anyone have a similar story?
A few days after i posted theis question Dr. Mercola had an article or a short blurb called "Proof of Fibromalgia" I wanted to give everyone the site ,, it was very interesting.
http://articles.mercola.com/sites/articles/archive/2008/11/22/proof-that-fibromyalgia-is-real.aspx
Check it out.
Thanks for the link to the article!
hi in a past post I submitted called Sjs vs Fibro, there is a good discussion about fibro. During the posts I had mentioned I found a Dr. Russell from Texas i think who has done amazing straight fwd reports for pysicians re fibromayalgia diagnosis, treatment and qhality of life changes which need to be made. There is a web site with the wonderful report, real detailed and easy to understand with many great practical solutions and help for this very real but diceiving disease. If you want to read the post go to the search and key in Fibromayalgia and then look for the post entitled Sjs vs fibro. If you want you can also go tho Dr. Russell's report at www.fm-cfs/fm.html take care Sandra