Most of you know that I have fibromyalgia. Well, today I was given the diagnosis of Systemic Lupus E. Because I also have the fibro, this will be very hard to treat, as the medications for lupus make the fibro worse. I have also tested positive for Raynauds syndrome, CREST syndrome and Sjorgens Syndrome. Anyone else out there??? Good thing I know that Jesus has already healed me!! And, He is coming soon!! In His Grace, Sissy

-- Sissy (iblong2Him@ilovejesus.net), April 03, 2002

Answers

Sissy...so very sorry about your health issues. I was just wondering if the same doctor has diagnosed you with all the above ailments..or if you have several doctors.

-- Sher (riverdobbers@webtv.net), April 03, 2002.

Oh Sissy, my heart goes out to you. These are very painful diseases you have mentioned. My Mother has Sjogren's and I have an Aunt with Lupus. I'm battling fybromialgia myself. You are right to thanks God. We might deal with things we can't handle, but by the grace of God, hes there for us to let carry us through! My prayers are with you. Toni

-- Toni (anothermother@hotmail.com), April 04, 2002.

Wow Sissy, that is a lot to deal with. I know that a lot is done with different diets, herbs and vitamins. Traditional doctors don't always mention these things but if they help even a little it would be worth the research. I would try searching to net for some information on how diet affects these various ailments. I will keep you in my prayers.

-- Melissa in SE Ohio (me@home.net), April 04, 2002.

Hi Sissy, I have been diagnosed with CREST Syndrome and Sjorgens also. I am doing pretty well right now. I am taking MSM infusions at my local doctors office. I just found out yesterday that the insurance will not pay for this. So I don't know how long I will be able to continue to do this. The farm is not going to keep up with this treatment. Feel free to ask questions. I cannot go on disability because I stayed home to raise the family. I cannot go on SSI because we own too much land. I will not sell land that has been in the family for almost 100 years. So we are looking for answers. Need to go. Write when you can. Cindy

-- Cindy HErbek (dh40203@navix.net), April 04, 2002.

Sissy hang in there. They are finding out more and more everyday. I have battled fibromyalgia for about 10 years. The Cleveland Clinic told me there was nothing that could be done. Live with the pain - not true. I started on a high regimine of Vita. and minerals plus started to swim. In the water I do not hurt and am able to streatch the muscles in my legs. That is were it has affected me the most. This illness and lupus,are auto immune defeciences. I am not sure the others are. So do things to boast your immune system naturally. There is a fibromyalgia web site. I have not been on it for quite awhile. I have found that the changing weather has a lot to do with it. Research has found that some of the leg pain comes from lack of oxygen to the muscles. If you can find someone to message your legs and arms that also has helped me. But you have got to keep moving. I know somedays it is very hard. It is very hard for me to stand or walk for long periods of times. But I feel if I don't keep pushing someday I wont be able too. Good luck - God Bless and keep the faith. When the pain gets too bad I make my mind go to my special place in the Mts. I start at the bottom of the Mts. and set my sights on the cabin at the top and start to climb. It works for me. I know it sounds nuts but it works for me. Billie NE Oh

-- billie jagers (billie@config.com), April 04, 2002.

Sissy , sorry you got everything in one bunch .It is not surprising to me as they tend to run in groups .Very seldom does a person have just one auto imune disease.I suggest a support group , I belong to lupies on yahoo it does help .Everytime I think I am really down , I find there is someone worse off.I have also started taking high dose vitamins .Take a deep breath and realize it could aleways be worse.Now that you have calmed down figure out is this going to take over your life or are you gonna live and have it just be a pain in the butt {legs,arms,neck,back }? You will do fine .Inform yourself , do lots of research on the net .DO NOT just take the doctors word on everything .If you need to talk email me .

-- Patty Gamble (fodfarms@slic.com), April 04, 2002.

Sissy, Our greatest consolation is that this is only temporary and our glorified bodies will have no pain! In the mean time, some of the things I have found to help are first get on an all organic diet, or as close as you are able to. If I prepare all my food from scratch I don't get the msg and preservatives that are in most of our foods these days. Second, remove ALL fragranced products from your environment as these cause immune system disfunction. Don't let anyone smoke around you. If you have a tv, pitch it. The tv actually will drain your energy to the point that even after it is off you will fell tireder than when you first turned it on. Some people (like me) have felt better after switching to the eat right for your type diet. I also find it helpful to take ginger, cayenne pepper, and tumeric. Most of all, trust the Father not to give you what He knows your cannot handle. (My dx are: RA, sjorgen's, fibro, chronic fatigue, non-hodgekin's lymphoma,) In Dec 92, my oncologist told me I was dying and had very little time left, the lymphoma was resistant to the high powered chemo but he wanted to up the dose and add another agent to what he was already giving me. I was convinced he would kill me with one more round of chemo, so I quit treatment and put my trust in God alone. It seemed to me that if God wanted me Home, that is where I wanted to be too, and if He wanted me here then I was willing to stay until He was ready for me there. I went into complete spontaneous remission and still have no active symptoms from the lymphoma. I give God the glory! Now why I still have the other problems only God knows, but I remember the words of Paul that we have tribulation so that we can comfort others with the same comfort with which we have been comforted. God bless you, Kim.

-- kim in CO (kimk61252@hotmail.com), April 04, 2002.

Hi Sissy..the reason I asked about the doctors is because if you are going to more than one, which many people do, the drugs they each may be giving you might react adversely. I think you have heard from some mighty knowledgable women on here. For me.. I pray that God shows me which way to go and that He will lead me to the things I need to help myself. The fragrance thing bothered me..also alot of the chemicals in the house that we would use everyday..from certain shampoos ( I loved Herbal Essence) to laudry soaps and softeners. When I cut back on them..I did feel improvement. I also try to watch what goes in my mouth and I do take alot of viatamins and minerals. I am much better than I was a year ago..but not as good as I expect to be in another year. Do I have bad days? Yep..I look at them as days to appreciate my good days even more! Hope you improve and I hope all the ladies on here have a pain free day..or as near it as you can get!

-- Sher (riverdobbers@webtv.net), April 04, 2002.

Oh, you guys are all so wonderful! I knew I could post here and find warmth and caring! Thankyou each and everyone! I have been going to the same 2 doctors, who keep in touch with each other; and they recommended that I go to this specialist in Phoenix, which I did. He is the one I will be dealing with primarily from now on. I try to stay away from any drugs. I do a lot of vitamins, msn, biotin, and herbs, etc. I am totally convinced that God knew me, formed me and knew all about what my life was to be. This is not a surprise to Him!! And, I also know that He has it already taken care of. I have placed it in His hands, and asked that He may use it for His Glory. I love you all, Sissy

-- Sissy (iblong2Him@ilovejesus.net), April 04, 2002.

You may want to try lymphatic drainage. Your immune system is in over- drive which causes your lymphatic system to get full of gunk that needs a way out. Lymphatic drainage is similar to massage, it consistis of very gentle tapping and stroking to encourage the flow of lymph through your lymph nodes and into the blood. It can be done while you are fully clothed. Many massage therapists are also trained in lymphatic drainage.

-- Sherri C in Central Indiana (CeltiaSkye@xaol.com), April 04, 2002.

I started out with a diagnosis of lupus and ended up with mixed or undeifferentiated connective tissue disease. Most folks with this also have fibromyalgia and often endometriosis. I've been officially disabled for 13 years now. If you ever need any help or want to talk...just contact me ;-)

-- Peace and Carrots Farm, Vermont (wsm311@aol.com), April 08, 2002.

Hi, I live in England and nobody takes any notice of Cest the doctors dont seem to even know what it is or belive how i feel! I have majir problems with my teeth and they wont even conect it to Sjorgens? My Rayuards I was told to wear glovesand when I told my doctor I had sclerodema he said I was silly go away its very rare!good luck Jeannie x

-- Jeannie Galston (jeannieg121@hotmail.com), August 25, 2002.

I wonder: Have any of you been users of diet drinks, low fat foods or sweets ?? ?

-- Granny Hen (cluckin along@cs.com), August 26, 2002.

I want to know if anyone would like to E-Mail me information about sjorgens syndrome, I was just diagnoised. Thank you, please E-Mail me directly and put Sjorgens in the subject box. I hope you all feel better. Karla

-- karla O'connor (koconnor02@aol.com), September 07, 2002.