Hi everyone.
Just joined the group, and I'm not in a very good place right now. I've been struggling with a wide variety of symptoms for years, from fatigue so great I can't move, to severely painful dry eyes, joint pain, muscle spasms and weakness, low grade fevers and stomach pain. Have had so much going on, that I don't remember everything... which is why I've been keeping a list. I also have some short term memory issues, but so far I've been able to compensate for them. I can't remember when things started, the past year or 2 have been really bad.
I'm having a really hard time finding a good dr who can figure out what's going on with me. It took me almost a year to talk my PCP into sending me to a rheumatologist, and the rheumatologist was really bad. She glanced over my blood work, completely disregarded my symptoms list, and seemed to have made up her mind before I saw her that I have fibromyalgia or CFS. Don't have fibro... don't have any of the tender points and the pain I have is more joint than muscle. Very frustrated with drs in general, especially since I cannot find any good ones here!
My naturopath (who's the 1st person that mentioned Sjogren's as a possibility) is very supportive... problem is she's 7 hours away, so I can only work with her over the phone. My eye dr is also very supportive... she did the dye test for eye dryness and sure enough I only had a tiny bit of moisture by my tear ducts. Very thankful she gave me a trial of Restasis, which is helping! Am having a really rough time adjusting to my new glasses, though. I am very discouraged by my experience with this rheumatologist, and I'm not very happy with my PCP either.
All the blood work the rheumatologist did, plus chest xray, came back normal, though I have no idea how it could possibly be normal, with how severe my symptoms are. I'm also extremely unhappy with how this rheumatologist gave me my test results... she called my cell phone and left the results by voicemail!
I'm only 28, and its quite depressing seeing normal, healthy people my age... not being able to do things other people my age do. I eat healthy (organic, local as much as possible, vegetarian), too. I feel like I'm missing out on so much. My symptoms are a big part of why I had to quit nursing school after 3.5 years. Despite everything (and because I'm also extremely stubborn... most days I function on sheer determination and will power), I am working on finishing school (BA in biology) though its taking too long for my taste. Plus I also am in charge of managing the animals on our farm (ponies, alpacas, ducks, geese), which I enjoy but I've had to delegate a lot to other people. Had to give up trimming toenails, since I've lost so much strength in my hands.
Unsure of how to proceed next with my PCP... refer me to another rheumatologist or go the neurologist route next? Find a new PCP? My gut feeling is I have something autoimmune or neurological going on. Really wish my naturopath lived closer to me.
Anyone have any suggestions on good drs in Maine?
You are fighting a good fight. don't give up. If at all possible, keep going with your schooling. I know it may be hard but don't look at the long range of things. Just take it one day at a time.
You don't sound like you are happy with your doctors, so I would be looking for doctors that are somewhat helpful. They can be difficult to find at times but don't give up.
I wish you all the best.
First, let me welcome you to the forum. I was about your age when an auto accident left me paralyzed on my left side. As the doctors were trying to figure it out, the fibro kicked in. The fibromyalgia brought with it severe depression.
First I would like you to read spoon theory to help you with understanding and managing your energy levels.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Second, you may benefit from reading my post on "Pain Management" on this forum.
Being a full time student was a challenge for me when I went back to school for a degree in computers. I ended up finding a school that allowed me to take a little longer and use some of my credits from other schools so I could get my degree. You may want to look into part time options to finish your degree.
Depression is a real bugger. With out hope for a positive future it can be a real problem. "Feeling Good" by David Burns has a lot of exercises that you can do to improve your mental health. It is a good read and the techniques helped me for many years. When I could no longer control my depression with CBT, I sought professional help. That may be another route you could choose.
Hi arina83 - welcome!
We have many members who have all the "symptoms" of Sjogren's, but their bloodwork is sero-negative. The key is to find doctors who will treat you based on your symptoms and who doesn't dismiss you because your bloodwork says otherwise.
If you would put a post on the Discussion Board with the heading: Any Maine members?, perhaps you could find other members who live there and can give you doctor recommendations.
It would be difficult to travel 7 hours to see a doctor - however, several of our members DO travel quite a distance to see their doctors.
I hope you find this site helpful to you on your Sjogren's journey. Just know, when you come here, "we get it". We know about the frustration of finding good doctors, about trying to function as "normal" people when we feel anything but normal. Just take it day by day and also look for the things you CAN do - albeit, somewhat different from what you have done in the past.
We also have live chats several nights during the week where we spend an hour together talking about whatever is on our minds . . . whether it's about Sjogren's, the weather, pets, food, our families, etc.
Bucky
Welcome arina,
My heart goes out to you, angel.
The reality is that there is a huge unknown universe of things that go wrong with us, in various combinations.
Doctors learn some general information about the human body, and then concentrate on the universe of things that are known. Specific symptoms, with specific diagnostic tests and specific medications and treatments. They are comfortable in their known universe. They get paid for dealing with that known universe. Many insurance companies want doctors to deal with only two symptoms in one visit! Try that one!
The known universe is a very small part of the entire universe of things that can go wrong.
The means that most doctors will have a very difficult time dealing with those of us who don't 'fit the known patterns'.
There are good doctors who pay close attention to what you are experiencing and then will be willing to try some of the solutions (drugs and treatments) that might help.
Surely a good doctor will treat:
dry eyes
dry mouth
pain
fatigue related to the depression caused by pain
The problem is finding things that help, but don't have terrible side effects.
This is a search that most of us have carried on for years, arina. It doesn't seem fair that we have to be our own advocates when we feel so terrible. But if you keep talking here and asking questions you will learn how to care for yourself.
Medical schools and medical centers often provide the best possible medical expertise.
Maine has a medical school of osteopathic medicine.
http://www.une.edu/com/dean/upload/comoverviewbrochure.pdf
Tufts Medical School also runs a program in Maine with a Medical Center in Portland.
http://www.mmc.org/mmc_body.cfm?id=794
Over the years, especially recently, I have seen my problems multiply, but I've also begun to find some answers to WHY I have my problems. AND many of the answers are not the ones I thought they would be.
So I am developing a bit of humility (much needed) about my ability to self diagnose.
Also, it often takes several years for blood work to show the auto immune diseases that have caused problems.
Many people here have waited 10 or 20 years or MORE before they had blood work that confirmed their diagnosis.
Do keep trying to find help, but also find ways to help yourself.
A humidifier next to your bed will help your eyes and mouth at night.
There are OTC products that also help.
Ask questions, share problems and concerns.
Keep us posted.
Hugs
Elaine
Thank you all for the welcome and support.
First thing I did when I started reading posts here was figure out what spoon theory is. Is it normal to not know how many spoons you have, from one moment to the next? Thought I had about 14 when I woke up this morning, but after showering, getting dressed, walking to the barn to feed my ponies, and then walking back down to the house, I was at about 4. Spent the rest of the day not doing much physical, and I don't feel quite so wiped out today.
I try to manage my energy levels as best I can, but there are some situations here which mean that sometimes I have to do things that I don't have the energy to deal with. Both my ponies have health issues, and I'm the one with the most knowledge in their care... so its very important for their health that I see them every day and control their feeding. Plus, even when I'm physically exhausted, visiting them helps me feel better emotionally. Then there's birthing season with the alpacas (thankfully over for this year). I'm the only one who knows how to deal with things if there's an problem, and I have the most knowledge for neonatal care. So even when I'm so exhausted I'd otherwise be in bed, there are situations where I need to drag my butt out to the barn. Have had several instances where if I hadn't acted quickly, even though I was exhausted at the time, the baby wouldn't have lived. I try my best to care for myself, but I will always put the health of my animals first in critical situations.
I'm also very aware of the importance of exercise, which is why I try to make the walk out to my ponies and back once a day. I made it through 3.5 years of nursing school, until I had to quit due to problems with the school I was at and my own pain from being on my feet so much.
I am definitely going to persist in getting my degree. Its just very frustrating sometimes.... feeling like I can mentally handle more of a course load, but knowing that I can't physically handle it.
I have been seeing a therapist for the past year, and having that outlet for my frustration is very helpful. I've actually found equine facilitated experiential learning much more helpful than talking with a therapist. Attended an amazing workshop this summer. My favorite author in the field is Linda Kohanov.
What has really helped me when I get depressed is that I am now aware that happens when my frustration and anger about being sick, not being able to figure out why and not being able to do what I want grows a lot. Really like Karla McLaren's "Language of Emotions".
I definitely have hopes for the future... I just get very angry and frustrated I can't pursue them as easily and quickly as I want, because I don't feel well.
I think my current plan is to make an appointment with my ND for friday or next week (spending this week studying for my exam on thursday) to talk with her about her perspective. Also going to make an appointment with my PCP, and bring a family member with me, and politely demand to be referred to another rheumatologist and even a neurologist. If she won't, then I'm going to figure out how to get a new PCP.
I've seen about the chats... just haven't been online when they're going on or I forget (darn short term memory issues!).
Having a really bad day today. Barely slept (tossing and turning from joint pain) and am so tired. Resting until I feel up to doing more studying, which will probably be just watching videos today.
Most of us have no idea how many spoons we have on any given day. We have no idea how fast we use them. That was the point of "Spoon Theory". There are a number of things that you can do to help you manage your spoons. You can find the information on this forum.
Arina,
Let me also welcome you to the forum! ;)
I think you'll find this a warm and welcoming place, with people who understand the find of anger and frustration you feel. We all seem to either be going through that or have "been there, done that."
Your plan to see the PCP and ask (insist on) a referral to another rheumatologist is good. Some of us have found a great PCP who will treat our symptoms, which can be a real lifesaver.
I had a good PCP who was great as long as it was something simple like strep throat or anything "well-known" and easy. When it got to my issues, he was as frustrated as I was as to how to help me. I found a new one who was willing to listen, diagnose me and treat me appropriately. This was a year ago, and it has improved my life quite a bit.
The spoon theory is a great way to explain to others how we run out of "fuel" so quickly. For those of us who analyze (like me) I can't try to figure out from day to day how many "spoons" I have because they always change all day long ;)
I'm sorry you're having such a bad day today. Please know we all understand, there is hope for you to feel better, yes, it is frustrating to not know how or when, but it will happen for you when you get appropriate treatment. Hang in there and know we care. :)
Melinda
Arina:
This is a wonderful place to find support and answers to your questions. It is so frustrating to feel so poorly and not have a diagnosis.
Keep on your doctors until they figure things out.
My heart goes out to you,
Buddybelle
Arina, welcome! We're glad you've found us --- but sorry you had to look.
This is a wonderful place filled with very courageous and compassionate people. Feel free to ask any questions you have -- the collective knowledge on this board is amazing.
My thoughts are with you as you navigate these eel-infested waters!
Hi Arina :)
Welcome to Sjogren's world. Sorry I'm a bit late!
I hope you find the site useful - I know you've already found it to be friendly.
Take care - Scottie :)
Thank you all for the welcomes.
Making some progress. Will be talking to my ND on friday... not ready to talk to my PCP yet since I'm still too upset with her.
Having a better day today... energy is better but my hands are very painful and feeling swollen.
Glad you're feeling a bit better today, arina.
Hang in there and know we care. Keep us posted. :D
Melinda
Welcome Arina and glad you're doing better. Sending positive thoughts your way!
Today was much better. Got my labs faxed to me, and while most were within "normal" limits, my C-reactive protein was lower than the reference range and I have "vertical scarring" in my left lung. So not all "normal & nothing's wrong" like this rheumy thought. Going to do some research about this and bring what I find when I see my PCP next week (and hopefully convince her to send me to a better rheumy).
Had a very nice conversation with my ND this morning. She's confirmed my feelings... that I have Sjogren's and possibly Raynaud's too. Very nice that we've both on the same page.
Next step is seeing my PCP on tuesday and convincing her to refer me to another rheumy, and if she won't I'm finding another PCP.
Quote from: arina83 on October 21, 2011, 02:34:34 PM
Had a very nice conversation with my ND this morning. She's confirmed my feelings... that I have Sjogren's and possibly Raynaud's too. Very nice that we've both on the same page.
Next step is seeing my PCP on tuesday and convincing her to refer me to another rheumy, and if she won't I'm finding another PCP.
Yay!!! You go girl!!
I caant imagine a doctor being wrong,, but glad you held there feet to the fire,,, sorry for the reference to burning feet to those os us with neuropathy