I am new to this forum board, but am anxious to see everyone's posts and compare notes. I currently have Sjogrens, RA and Renal Tubular Acidosis. I was hospitalized 2 1/2 years ago due to potassium level dropping to 1.2 and that was how I got my diagnosis. I regularly see a Rheumatologist, Nephrologist, Internal Med. Doctor, Opthamologist, and dentist every four months. I take Plaquenil, Evoxac, Klor Con, sodium bicarbonate, Calcium, B-12, Vitamin D, Sinthroid, and a few other maintenance drugs. I have gone from 1 pill daily to 26. I have been working for 32 years and always energetic and capable. Lately my concentration has been lacking and I have a hard time focusing. Is this a normal SJ symptom? My energy level has drastically dropped and it takes me about an hour to get moving in the morning. I believe I have had SJ for many years, as I have been dealing with dry eyes for about 10 years. It just recently became worse in the last 5 years. Tried the punctal plugs, now have had lower tear ducts permanently closed. Body aches and legs and arms feel weak. My hands go to sleep at night. I am sure everyone else feels the same, it is just hard to not be as active. Does some sort of exercise help or hurt? I accidentally got into some poison ivy about a month ago and my doctor gave me prednisone 10m for a ten day decreasing dosage. I felt great. Too bad that this drug is so bad for you long term. I apperciate all the information that everyone has submitted and I intend to check in regularly.
Thanks.
BUSYLIZZY
BUSYLIZZY welcome to the forum. The lack of concentration and brain fog is typical for most people with an AI disease, not just Sjogrens. There are supplements that help.
Strength, Weight train, and Endurance exercises typically hurt or hinder. Range of motion, Isometrics, and Tai Chi seem to help.
I have had problems with some of the traditional medications so I have focused on alternative therapist.
Welcome Lizzy to the group!
I think with Sjogrens, all of us here had it for a loooong time until we were officially diagnosed. A lot of the symptoms we just attributed to "something else" and really didn't get going to find a diagnosis until they got really bad. My gp was watching my blood numbers for many years until they got "wacky enough" for him to start me on the the specialist rounds to find a diagnosis as to why. 6 yrs later I got one = SJS.
I feel lucky in the sense that I don't have the pain and RA that a bunch of our member seem to have. I work full time and home sick today due to I got hit with a big flare. With me I can usually feel it coming so I can negate "hitting the brick wall" and barrel through but today I have all the flu-like symptoms and soooooo tired. I am trying to move about just now which is 2:20pm eastern Iowa time.
As to taking an hour in the morning: I am not a morning person BUT I can't getup and go in the mornings. I have to get used to the idea. I get up 2 hours before I leave for work. Maybe you are like me in that respect??
Sorry about all the pills you have to take. I would really have a talk with the dr/drs about the medications. You should know what each is for, sides effects, etc etc. Do all your doctors know about ALLL the medications you are taking?? Honestly, I would have a REVEIW of all your medications too see they are ALL needed and ok with each other.
Good Luck!
Thank you for your replies. Yes, all my doctors are aware of my meds, although the nephrologist is the main doctor that monitors and I have to let him know if I take anything else. He told me that I could not take any otc pain relievers other than extra strength tylenol and that I was only allowed two a day. I am contemplating checking into retirement, as it seems I am just not as efficient as I should be. I am not old enough for social security (close, but not there yet) , however my employer has good long term disability coverage. I just don't know if I would qualify. I know that the Social Security Admin now recognizes Sjogrens as a disabling condition. Hard to come to the reality of not working one day.
This is a great resource, and it is good to be able to talk to people that have the same feelings and symptoms I have. Good to be able to compare notes.
Thank you for your comments.
BUSYLIZZY
Welcome, Busylizzy! I hope you find good help here, along with the good company. :)
Cheryl
Hi!
Well, I had a difficult time with many of the things you mentioned- fatigue, brain fog, dry eyes and mouth, weakness, tingling in the arms and legs, etc. I don't have a diagnosis yet- this all started about 6 months ago for me.
Just in the last few weeks I have been feeling much, much better. I think whatever I have is backing off for a while. So, I just wanted to suggest maybe a short term leave or disability as a possibility for you. It is possible that things may go into remission, although it sounds like you have quite a bit of involvement. But maybe short term would help you rest enough that you could go back for a bit longer until you are squared away financially.
I like Joe's info about exercise and I find that is true with me too. I absolutely can't exercise like I used to. Stretching seems to help with the aches somewhat.
I want to try yoga too- my brain is so cluttered on some days I can't focus and I worry about the impact it has on me at work. But that has gotten better over the last few weeks.
Also- since you can't do ibuprofen- any type of anti-inflammatory foods might help if you find something that works for you. I think a lot of my aches are from inflammation. I take ibuprofen almost every day!
Take care and welcome to the group. It is interesting for me to see how similar your symptoms are to mine.
Rachel F.
Hi Lizzy :)
Just want to add my welcome to you to Sjogren's world. Brain-fog is all too normal. The worst brainfog I ever had though, was when my thyroid developed problems. It's not unusual to have thyrpoid problems alongside SjS, so if you haven't had it checked recently - get it checked out.
Thyroid meds helped my brain fog a lot.
Take care - Scottie :)