Hi, I decided to try and go out today as I have been housebound for 3 weeks. The soles of both feet are very painful every day with ocassional sharp, jabbing pains under toes. So I ventured to local supermarket holding on to trolley picked up some groceries then out of the blue the sharp jabbing pains under my toes was horrific I could only walk on my heels sat pretending to be trying on shoes but the pain was horrendous I have never experienced sharp pains like it eventually I had to ask to be helped out to my car I was so embarassed they were asking what is wrong with you I just did not know what to say. I have now lost the little confidence I had left has anyone else experienced anything like this not had definite dx yet rheumy is convinced it is SJS awaiting blood and EMG results.
JR
Get an epidermal nerve fiber density biopsy for peripheral neuropathy. With or without Sjogren's, you could have PN.
Dear Janette:
Oh dear, I know it was embarrassing. However, asking people for help gives them a chance to be useful to another person. And that is a good thing for them!
When they ask you what is wrong, tell them that you have disabling pain that comes upon you suddenly. That it is a nerve disorder of your legs, rather like MS, but very difficult to accurately diagnose and treat, and that you are under the care of a doctor.
Believe me, people will NOT administer a lie detector test, and most people just want to be helpful and sympathetic.
Ask your rheumy for a referral to a neurologist????
Hang in there.
Keep us posted.
Carolina
I just found you guys, I was just diagnosed with sjogrens , I have Graves disease and also interstital cystitis, I am 50. I have been so embarrased by my night blindness, I litteraly cannot see at night to drive, the opthamologist said it was because of the severe dry eyes, I am actually afraid to drive home from work in the winter months, has any one elese had this problem?
Hi Simon :)
Welcome to Sjogren's world. I don't see very well at night now and try to avoid driving in the dark. I used to like travelling late because the roads were quieter - but not now.
I hope you find the site useful.
Take care - Scottie :)
I too have trouble seeing at night and have had for quite some time. The family doesn't understand when I tell them. I am completely blind if it is night and raining.
Dry eyes make sense to me.
Really aggravating.
harlin
Yes, there have been times when I've been hurting so bad I thought I would have to ask for help, but thankfully it hasn't come to that. Please do not be embarrassed. I think what Carolina said was really good. "When they ask you what is wrong, tell them that you have disabling pain that comes upon you suddenly. That it is a nerve disorder of your legs, rather like MS, but very difficult to accurately diagnose and treat, and that you are under the care of a doctor." I will also keep that in my brain for when the time comes that I need to ask for help.
I have found that I cannot drive long distances anymore because I get so sleepy. If I drive somewhere, it has to be within 30 minutes from home or I don't go. I think the pain meds are what's causing that, but it's so hard. I can drive further if I'm off the meds, but I hurt so bad I don't want to go anywhere. It's a double edged sword.
Hang in there. I know it's hard but we're here for you. Praying that you would find the confidence to try going out again.
Have you tried to go to a podiatrist? They can take an X-Ray and see what's wrong. Do you have RA?
Good luck!
Pegasus
Oh sweetie! I completely understand! It is embarrassing and more importantly robs you of the confidence to go out alone or go out at all for that matter!
I think this should be investigated and treatment started. There are medications that can help ease your neuropathy pain. It sounds like it is nerve related and should not be ignored!
Sending you encouragement and loving empathy!
Janna
Welcome Simon,
I've been night vision impaired since I was 16 years old and like you was told it is due to dry eye. Interestingly my eyes are not nearly as dry as others with Sjogren's and I do not require drops or any treatment for them, but apparently they are dry enough to make seeing at night very difficult. Do you have problems with glare? On the highway every car that comes along feels like they have their bright lights on and the glare actually hurts as they pass by plus I cannot see anything!
Looking forward to knowing you better.
Janna
Simon!
All my sympathy. I too have IC and it sucks majorly. don't have to pee 60 times a day (yet) thank god, but sometimes the pain is overwhelming. I find that mild stretching exercise in the water does actually help.
Night blindness? Goodness glare has made me crazy since I learned to drive! I once called my husband to come and get me in a friend's car to drive me and my baby home, cause it was raining and I simply couldn't stand the glare AND the rain. I was 22 years old.
Now of course it's worse and I didn't even THINK of the dryness! DUH.
I do know it gets worse for older people, and I AM 68 so definitely among the older crowd, no doubt about it.
I did recently get RX glasses that really snap my vision into clear focus. For some reason (Sjogren's????????) my eyes have become astigmatic (weird shape to the cornea) in the past two or three years!
So even tho' I have perfect corrective lenses INSIDE my eyes, done when I had cataract surgery especially to PUT the lenses in my eyes, cause I couldn't wear my contacts due to the Sjogren's, my vision started to get wonky. So I had a vision test two months ago.
Sure enough, it had changed enough to make things at a distance blurry, and add that to the night problem and I was getting really anxious. My depth perception at night is terrible, too, and having mono vision (distance in one eye and near in the other) makes that worse of course.
but I'm tending to think that my eyes have changed shape (become astigmatic) due to the Sjogren's! Is there any thing sacred, left untouched by the damned disease? NOPE.
I'm even losing my hearing, from nerve damage, due to GUESS WHAT? No one KNOWS for sure but I can make a guess. Starts with an S!
Now the one thing about me that you may notice is that I am entirely PROACTIVE about everything. Cataract surgery to have lenses put inside my eyes when I couldn't wear lenses, digital hearing aids for my hearing (and considering those implanted hearing aids you don't take out and fiddle with AT ALL), surgery for shoulder pain and hand pain, intense pursuit of the cause of my knee pain when everyone said "oh it's just arthritis, forget about it) leading to VERY SUCCESSFUL surgery for a huge tear in my meniscus that was jammed into my knee joint and would have never gotten better. I'm also wondering if Lasik would fix my distance eye a bit so I wouldn't need the glasses for driving! If it can be fixed, why not?
I am relentless in caring for myself, guyz. there's no other way. It sucks some times and some times I'm fighting every 'medical expert' in my OWN family!
Sorry bout the lecture, but honestly, my knee (stitches out, back in the pool!) has taught me an important lesson. Persevere!
Follow your gut! Get support, read, learn, go prepared to see the doctor and BEST, get the right doctor.
Ok worst case scenario? It's all in my head? Some one of my issues? OK MY HEAD IS IMPORTANT. If it's in my head, something is going on and needs to be addressed.
Believe in yourself, take care of yourself. If you don't, no one else is gonna do. And you cannot help others if you're hurting and sick and tired and miserable. So YOU first. Then, spare stuff, for other people. :-)
Carolina
Wow! I've found this thread fascinating. When I was in college I had a very thorough eye exam at the University, they have several students work on you. They tested me for night blindness and the doctor said I had terrible night vision but because I was so young (about 19 at the time) and I told him I worked at night, he did not put a restriction on my driver's license. He just told me to try to limit my night driving and to be very careful. I had no symptoms of SJS at the time (no dry eye), just recently started having the trademark symptoms. I have had astigmatism since I started wearing glasses at about 13. I have since avoided having another night vision test (23 years later) because I did not want to be restricted.
So, just a coincidence? Maybe poor night vision and SJS linked to the disease itself? or caused by dry eyes? How about the astigamatism, is there a link there?
Hey SYNG, I can't drive more than 30 minutes either. Any further I have to have someone drive me and I'm not on any pain meds.
Billydude-
WOW, that's weird. Is it because you get sleepy? I had this before I was on pain meds, now that I think of it. I chalked it up to eating a big meal, then driving, but it was more than that. Hmmm, interesting. Maybe it's the fatigue?
Caroline,
I love you and how inspirational you are. I love the talk you gave us on taking care of ourselves, perservere, and fix it if it can be fixed. Thank you for those words today because we all get down and we all start wondering if we're going crazy. Does anyone believe us? I have been going to a Rheumy for years. Before my Sjogren's dx I didn't think he believed me that I was in pain. My sed rate was high, my C-reative protein was high, yet for some reason I didn't feel that he believe that I was in this much pain. When I was finally dx'd with Sjogren's, I said to him, "Finally! Now you believe me that I am hurting so bad". He said to me that he never thought I wasn't hurting and wouldn't have put me on Methotrexate if he didn't think i was hurting. It's so hard to live day in & day out with this disease that, as we are realizing, affects every part of our bodies, and feel that we might be the one going crazy, that it might be in our heads.
Thanks for reminding us that we know our bodies and we're our bodies only advocate.
Have a great day!
Caroline,
I too appreciate your upbeat response, but the only thing I would suggest is a VERY through check into the lasik, it can actually be the worst thing to do in many cases!
I am not familar with the eye problem you mentioned, but found your description of it similar to mine, I have a eye disease called Karaconus, it affects the corneas causing them to mis shape or bulge. the mis shape can only be seen under special equipment at your doctors unless it is bad enough to be seen when they examine your eyes under light and know what to look for.
My vision is the worst, actually legally blind in both eyes, have been for many years now UNTIL I went to the Boston Foundation for Sight in Boston Ma. a few years ago.
I really get tired of posting about it, but I continue just in case it may help others. They made lens for me that are filled with a liquid so this helps completely with the dry eyes as well, in fact the lens are made for Sjogren's patients as well as the eye disease I have as long as there is not too much scarring of the corneas.
Driving in the dark was impossible, shoot driving in the day light was a adventure!
Lucy is one that could possibly tell you more about the lasik, her story is quite interesting.
Those of you interested in these lens can go to their site
Hi Janrud and Simon,
Let me jump in to welcome y'all to the SJS World and family as well!
I don't drive much at night either (other than to and from work). Between the bright halogen lights, and drivers who don't quite know the difference between using the regular lights and high beams, it pretty much does me in too.
Take care y'all -
Patze
Oh Janrud, never be embarrassed to ask for help, as there are a lot of folks out there that are willing to go the extra mile. The others are so right, can you see a neuro soon (you don't need to live with such pain)?
Take care of yourself, and please keep us updated, okay?
Patze
Carolina,
Please, please be very careful about lasik with dry eyes. It can make dry eyes unbearable and your life miserable.
Anna
Syng...About the driving. I wish I knew why myself. Noone is able to really explain it to me so its a mystery. I've had so many close calls that I had to give up driving any distance all together. I'm ok around my small town but get me out on the open road and I'm out. The last time I tried to drive it was a 2 1/2 hour trip for a normal person and it took me about 5 hours because I had to keep stopping. After that I had to give it up before I killed myself along with somoone else. Is it just fatigue, CNS involvement, vaselvagel syncope issues. I don't know and neither do any of the doctors. But, seems like a lot of other Sjoggies have this same problem.