Need someone to talk to.
Posted , 11 users are following.
I have not been diagnosed with sjogrens, but I have many symptoms associated with Sjogrens. I have dry eyes, mouth, nose and vaginal dryness. My ears do not produce wax anymore, my hair is dry and has been falling out, lost half my hair in the past year. I have tinnitus, burning skin, mild joint pain, weakness in muscles and muscle loss. I have chronic fatigue, body can’t regulate temperature, cold all the time and I feel like I have the flu all the time. I have been going to doctors for the past two years, but they have only diagnosed me with sicca. I have low thyroid, currently taking Armour thyroid medication for over 10 years. My GP sent me to a Rheumatologist a year ago, did many test, but did not find anything wrong. My Rheumatologist sent me to ENT to do a lip biopsy, but never had it done due to complications of procedure. I just went back to see GP, she ran blood test again for Sjogrens, but everything came back normal. I have also gone to Cardiologist for chest pressure and shortness of breath, he wants to send me to a Pulmonologist to do pulmonary test. I have never had anxiety until all this started happening. I can’t sleep and I am now so depressed I don’t know what to do anymore. I lost my Job 15 months ago, but now too tired to work or Volunteer. I really need someone to talk to . My cousin who is my best friend does not understand, my husband knows there is something wrong, but just tells me to keep going back to the doctor. My daughter gets frustrated with me because I’m too tired to do anything. I’m scared and feel all alone.
0 likes, 26 replies
beverly39559 dianne12100
Posted
Dianne......I too am sorry you are going through this. I was diagnosed with Sjogrens about 7 years ago. Finally found a neurologist in Phoenix who is understanding and sees me about every 3 months now that I’m somewhat stabilized. My biggest issue besides an extremely dry mouth and throat is small fiber neuropathy and fatigue. The neuropathy is mainly in my feet and ankles which causes a weak tired feeling most of the time.
I’ve written on this site that I try walking a couple miles a day and exercise with a stability ball. (I’ve taken 5 years of classes so I know which exercises are right for me). I have a few friends I can talk to but they don’t really understand the pain and fatigue we go through. Having a site like this has been good for me. My husband is supportive but he doesn’t want to hear me complaining so I try not to. I’m wondering if I should ask my neurologist about Placquinal since a couple people have said it’s helped their neuropathy. I’m now on Azathioprine for neuropathy. It’s been stable for about 4 years but lately seems to be getting worse which is the pits.
If anyone has any other suggestions about treatment for neuropathy I’d be anxious to hear anything on the subject. Also anything about treatment with diet or supplements.
Thanks and hope you’re all having a good Monday. 😊
margaret22116 beverly39559
Posted
maggie98748 dianne12100
Posted
Hello Dianne. I am so sorry you are going through this too. Feeling very unwell without a diagnosis and, therefore, no help is exhausting, frustrating and incredibly difficult to deal with. Our family and friends just don't know what to say or do. I was told by a doctor that I must be patient because they have to keep testing to rule things out before they come to an accurate diagnosis when things are not clear. So in a way your husband is right, keep going back to the doctor. Write down all of your symptoms, every one, the time of day they happen, if eating makes a difference, how much you can do before you become exhausted or in too much pain to continue etc. Give the doctor time to read it without speaking and just wait to see if it helps him or her think of something new.
I have several diseases, one took eight years to be diagnosed and treated and another over ten years which I am in the process of final investigations for. Many of the symptoms are similar to sjogrens and I was very surprised when tests for that came back negative so it was back to the doctor with my extensive list.
Although it takes a lot of patience and it is a very worrying time you will get to the bottom of what is ailing you but you do have to be proactive. Not being able to put a name to it yet makes it difficult for people to be supportive which adds to your distress I know so be kind to yourself and don't worry about what people think, they just don't understand what you are going through. You will get there.
All the best. Maggie
dianne12100 maggie98748
Posted
It would be nice to have a name for all my symptoms just so people may have a better understanding. I guess with no diagnosis I keep thinking that this will go away and my life will get back to the way it was. In denial, I don’t want an autoimmune.
Dianne
aitarg35939 dianne12100
Posted
Hi Dianne
Like so many things that afflict mostly or only women, SS is pretty invisible to those around us. One thing that can help is to take a spouse/child/friend to an in-person support group meeting. Since you are in the States, contact the Sjogren's Syndrome Foundation. Ask if there are any groups who meet near you. I'm in Central Texas & our group meets on a quarterly basis. In some places they meet monthly. Of course lots of places don't have a meeting, especially small towns.
I suggest contacting them now before they break for the semester -- they're part of Johns Hopkins in Baltimore. I don't know if they have a physician locator; I've never found such a button but their pages aren't designed for smartphones so it's easy to miss something.
You're not alone. We're always here.
dianne12100 aitarg35939
Posted
I thank everyone on this group for being so helpful and caring.
Dianne
aitarg35939 dianne12100
Posted
That's too bad. Hoping not to jinx it, I refrained from mentioning that even San Antonio doesn't have one. They're half a million bigger than Austin in population and only a bit bigger than San Diego.
Call anyway. Ask if anyone in the Dan Diego area has asked about starting a group, because that's how they happen. My group isn't in Austin but in a bedroom community just north of us. Sad to say, this group is the only one from here to Mexico, a vast area covering 3+ million folks.
You could always run a spot in Craig's list, looking for folks with Sicca &/or Sjogren's.
shaq26875 dianne12100
Posted
Hi Dianne ..I was diagnosed with SS through blood test in 2015....after 3 months of plaquenil I went cold turkey and took myself off all meds (also have GERD and minimal Barrett's). Everything was fine for 15 months (I continued with exercise every morning 5 days a work) Fast forward to June 2017.....progressive excruciating swollen painful joints and muscle pains to the extent that needed help for daily personal routine, neuropathy in fingers and feet, cramps in toes etc etc. ..I was forced to return to rheumatologist in June.....so back on plaquenil.... now neuropathy almost gone, can do my normal personal routines by myself. Still cant lift/ carry shopping bags or even a handbag for more than a few minutes and cant look down to read for more than a few minutes at a time without stiff painful neck and heavy head (still afraid to restart exercise regime) BUT life is soo much better now than 6 months ago. Even extreme fatigue has gone. Rheumatologist told me that only reduce plaquenil to 1 tab a day when all symptoms have gone for a year...and then stop after another year when no symptoms return. Plaquenil has improved my quality of life but I don't know when I will be able to stop.