I am interested in knowing if there are any members from the Mississippi area. I do not know of any support groups locally and would love to participate in one and compare notes. I got my diagnosis of Sjogrens three years ago, but have been dealing with dry eye issues for about 10 years. I had a thryoidectomy four years ago. Later I was hospitalized for potassium level drop (1.2 level) temporary lost use of legs and arms and put on a heart monitor. That was where we found that I had Sjogrens, Renal Tubular Acidosis, and Rheumatoid Arthritis. I have a great Opthamologist, Nephrologist and Rheumatologist. Not so great Internal Med. doctor.
I have found success in wearing disposable contact lens on both eyes. They are not any prescription strength, just a blank contact. I don't know if anyone else has tried this, but my eyes had gotten so bad that I was wearing sunglasses in the house, and just going to bed to keep my eyes closed. My vision was so bad that I could not read and it was a wonder that I even made it home driving each night. The contacts help hold moisture in my eyes to be able to function during the day. They also kept those awful filaments that adhered to the eyes from forming. I put a drop of Restasis on the contact before inserting. It burns for just a few minutes, but after that the relief is great. I can function during the day and remove them around dinner time. I cannot say it will work for everyone, but, it has been good for me.
I have read about people having "flares" with Sjogrens. I guess this is new to me. Within the last four months, I feel like I have taken a turn for the worse. Neck hurts on both sides, underarms hurt and are swollen. Exhausted, fatigued, cannot concentrate or focus. Legs feel numb and weak. Hands and arms ache and go to sleep. From what everyone else has posted, I guess this would qualify as a flare. I go to my Rheumatologist next week. I guess I should discuss this with her.
Not opposed to early retirement. (I am close to the age, but no cigar) My employer has long term disability, I just don't know if I fall into that category. I am really tired.
All in all, I don't think I have it as bad as some of the posts I have read. I hope to gain a contact in the Mississippi area and would love to visit.
Thank you for all your input and great information.
Welcome!! I'm sorta new to this board and haven't figured out why our location can't be displayed under our names??? (unless we wouldn't want it known)
I hope you find some people who are near you. You can also contact your hospital and see if they have a support group going. If not, they can help you advertise to get one started.
just discovered something... click on the "people" icon under your name.... it then shows your location ... so you could click on other members' names
but posting this is easiest!! :)
Hi!
Welcome to the forum!
How did your visit go with your rheumatologist?
Your symptoms sound like a flare to me, too. Hope you are feeling better.
Give us an update when you can.
Rachel F.
Not everyone has put their location in their profile. If I have not welcomed you before BUSYLIZZY, welcome. I am glad that you have found some good ones. Keep looking for the others.
Thank you to all the comments. I will see my Rheumatologist on Monday, I hope I do not overwhelm her with all my issues. Went to the Opthamologist the other day. He is real supportive and is doing everything he can to avoid the early retirement if at all possible. Gave me a new prescription for glasses as my vision is not good and said maybe this would help some. I swear by the bandage contacts as I could not make it without them. I left them out the morning of my appointment and they were so irritated and red, it was such a relief to put them in afterwards.
I was wondering if anyone else has tried them.
I hope everyone has a great weekend.
Take care.
BUSYLIZZY
I used to wear only one contact .. that was all i needed. I always thought it was weird that the uncovered eye felt drier than the covered one!!
Visited with the Rheumatologist Monday. Told her how I have felt over the last few months. Asked her about flares and she agreed. I have been having anxious moments and nervous tremmors. Legs, arms and hands ache and feel unsteady. She gave me a low dose prescripton of 30mg Cymbalta and has scheduled me a visit with a neurologist. I follow up with her in two months. Don't know exactly what type blood work she did this time. She took about 6 tubes of blood. I guess I will hear next visit.
Go the the Nephrologist and dentist next month.
I am anxious to hear what everyone's experiences have been with Cymbalta. I only have taken it for two days, and I take it in the evening. The only thing I notice is a sluggish and somewhat nauseated feeling in the AM and a mild headache. I am a bit fearful of all that I have read about it. I do think I need it to help with the anxiety, or I need to get my husband on prozac as he casues a good bit of the stress. HA!
I am going to the State Baseball tournaments tomorrow through Sunday in Biloxi, MS. My grandson plays second base. He is really pretty good; has great hand to eye coordination. The only thing is the awful sun. I will wear sunscreen, sit under an awning/tent and drink plenty of liquids.
From what I have read from other posts, the sun can be a big culprit for bad things.
I hope everyone has a good week.
BUSYLIZZY
Hi Lizzy my name is Teresa and I live in Richland ms on the outskirts of jackson....to my knowledge there aren't any support groups for sjogrens in Mississippi. I attended a support group for fibromyalgia at st dominic hospital about 10 years ago but didn't go much...and finally quit going. I would like to find a group for sjogrens... its such a weird disease its hard to know what to expect next...where are you in the great state of Mississippi if you don't mind me asking maybe we could he together and compare notes...I know one other person with sjogrens maybe we could all meet one day..
Hi BusyLizzy,
If I've not welcomed you yet to the forum, Welcome! ;) I think you'll find everyone here warm and supportive and also find great information.
I'm glad you were able to tell the rhuematologist all your symptoms. I think anxiety sort of goes along with these conditions, or is actually a part of it rather than a by-product.
I was put on Cymbalta (30 mgs.) when I began "this journey" 2 years ago. This was before we really knew what was going on, but I was very anxious, had tingling pain, horrible fatigue, and some joint pain/stiffness. It really helped my anxiety levels and helped some stiffness and fatigue right away. I seem to remember just a bit of a headache for the first couple of weeks and then it was gone.
Shortly after, I went on 60 mgs. and I was able to function quite well for the next 6-9 months. I hope this helps you.
Take care and remember to ask anything anytime you need. :D
Melinda
Thany you for your replies. Baseball tournaments over and back to work.
MELD256: I have a call in to the Rhuematologist this morning. The Cymbalta made me so nervous and a horrible headache. It felt like my whole body was shaking inside. Does that sound normal?
KARLEESGRANNY: I live in Morton, but work in Jackson. I see your email on your profile, so I will send you a message and we can compare notes. It is good to have someone to be able to talk with. I cannot wait to meet you.
Hi and welcome...I live in Mobile, Al so that isn't too far from Miss. You did not say where you were from in Miss. so I don't know how close we are. Let me know and maybe we can work something out. Good luck. Hugs, Redetha
I don't know if any of you gals are members of the Sjogren's Syndrome Foundation - but, they have a list, by state, of support groups and/or contact people you can get in touch with.
I'm looking at the information they sent in May 2011 and there are three people in Mississippi. Their locations are Biloxi, Oxford and Tupelo. If any of these locations are near you, you can PM me and I can give you a name and phone number of a contact person.
Bucky
BusyLizzy,
I'm sorry my reply is so late! No, shaking insides do not sound normal or pleasant with the Cymbalta. I know some people have had different side effects. Wondering if the rheumy took you off it?
Take care, and glad you made it through the tournaments.
Melinda
Off the Cymbalta. It was terrible.... I was referred to a neurologist because of numbness and weakness in arms and legs. I go for some sort of test next week that they insert needles and shock you. Sounds fun. The neuro gave me a low dose prescrption for clonazePAM and I took the first one last night. It seems to not effect me the way the Cymbalta does. She said the Cymbalta more so treats depression and I am not depressed. She said the ClonazePAM would better help my nervousness and help my minor anxiety issues. She will be starting me on a drug for Fibromyalgia after she saw that I could tollerate the other. I take so many pills, I hate to start any more. I can honestly say I never knew so many things go on with this Sjogren's thing.
Thank you to all for your replies!
BUSYLIZZY
Hi BusyLizzy,
I think the Cymbalta is also used for pain. Before we knew I had Sjogren's, I was started on Pristiq to address depression and also pain. It was rough starting on it also. It never did relieve the depression...helped some with the pain...but spiked my blood pressure so had to come off of it. I had forgotten how bad the pain was until I came off the Pristiq...OUCH.
Let us know how your testing goes next week. I have my first visit with a neurologist next week.
Hope you get to feeling better soon! :)
Shade
Shade, good luck with your Neuro Dr. I guess this is the next step on the Sjogrens ladder. Are we going up the ladder or down?
Second day of ClonazePam. Seems to be pretty good. They say it takes about a week to show imporvements in nervousness, but I actually see some in the first two doses. I really don't think I need too strong a med. I personally don't want to take too much. Everything has a side effect.
Neurologist wants to try me on Savella in about two weeks. After reading all the info on it, I am a bit scared.
Get my "needle shock" test next Wednesday. I will let you know how it went.
BUSYLIZZY
Hey :) I'm near Meridian. Send me a message when you get this. I'm kind of a slacker about checking this website though. Would love to talk to the MS/AL people sometime. Take care :)
Hi Bizzy Lizzy!!!
I live in AMory, MS (northeast, close to TUpelo) I was diagnosed last week!!! I love my rheumatologist! Dr Charles King in Tupelo......he is great - he is a leading rheumatologist!!!! - diagnosed me in two weeks.....took LOTS of blood , etc - had a terrible rash all over....
He started me on 200 mg plaquenil 2x/day and 5 mg prednisone daily for two months to try to clear up rash..
i actually feel very good and have not had the problems i see everyone else with this disease has...i do have some aches and pains in my ankles and wrists, but tylenol takes care of that.....little dry eye and mouth, but not major.......i think being diagnosed soooo early in this is the key , rash started in April and dermatologist did biopsy and sent me to Rheumatologist because he (derm) suspected lupus......
I do get tired, but i am 57 years old and do not exercise as i should so i think that is to be expected!!!!! lol....I am on facebook and my email should be on the board, so feel free to contact me anytime!!! :)
Hope you do well!!!!!!!!
Hi sharron,
Allow me to welcome you to the forum! :D I think you'll find loads of great info. here and lots of friendly people.
I'm glad to hear you have some minor symptoms, and that you were diagnosed so quickly. Sounds as if that good rheumatologist took action right away, and as you say, that can be very important.
Just a FYI, you may want to start your own "topic" and introduce yourself on the "Social Hour" section here; you should get many more people who can find you and also welcome you.
Again, welcome. Feel free to post away with any comments or concerns you might have. We're sort of like a big family who keeps adding members.
Looking forward to hearing more from you,
Melinda
Has anyone else tried the disposable blank contact lenses that BUSY LIZZY describes in post #1 ? She puts Restasis in each one and wears during the day ? This sounds kinda of interesting ?
Raymond, MS here. I've been diagnosed with sjogrens for about 10 years. have a great rheumatoligist in Jackson.
I am new to the message board & I'm from Mississippi. There is a support group in Memphis Tenn. & I plan on trying to go to that meeting soon. I have all the symptoms that I've read about on this board. The dry issue, pain, nervousness, gall bladder removed thyroid removed, appendix removed, weight loss...you name it I've had it. Hate to say it but I'm about to give up on trying to work.
Muffy12, I know it is hard to give up work. I had to do that for about two years before I got disability from the VA. When I got disability it was not from Sjogren's.
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.
With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three Ss of Sjogrens.
Hi BusyLizzy-
Welcome. I apologize for the late welcome. You will find while many of us are quite active here on the site we may disappear at times for a short while ...usually a flare or complication of some sort.
I am not near you but it looks like a few folks in your neck of the woods have joined in to connect with you.
I am out West but am available to anyone to listen and/or compare notes too.
Enjoy checking the forum out and learning about us and getting the information or answers you seek.
I took Cymbalta for a week. Felt like I was walking through mud up to my neck and made me agitated too.
We all react so differently to medicine.
Take care.
Grammad (Deb)