Mississippi

[BUSYLIZZY]

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. 

[jazzlover]

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!!

[Rachel F.]

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.

[Joe S.]

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.

[BUSYLIZZY]

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

[jazzlover]

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!!

[BUSYLIZZY]

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

[karleesgranny]

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..

[Meld256]

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.
Melinda

[BUSYLIZZY]

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.

[Redetha1]

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

[Bucky]

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

[Meld256]

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

[BUSYLIZZY]

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

[Shade]

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