Hello everyone. My Rheumy retired after me being his patient for just about 30 years. I have not seen a Rheumy in almost a year but our replacement will be on board in a few weeks now. We all waited, hoping that our doctor would come back after being sick, but that did not happen. :(
I have such health issues with my Lupus, Sjogrens, Raynauds...APS and a LONG LIST Of other things including just the worst back of all times!
For starters so I don't go on and on...these are my TWO biggest problems, (I think)
My doctor's office is now owned by the hospital so they are a corporation. If you live in NH that is what you get. After hours? NO doctor! You get the ER, and a "hospitalist" to tend to you. Good Luck there! I think we might all agree that you need a doctor that knows his or her stuff when it comes to these kind of sicknesses. IT just scares me so much.
My body thermostat is broken as I say. About 5 years ago I stopped sweating completely under my arms. I have such dry eyes, mouth, and other places I need not mention. I was tested and came back positive for Sjogrens. I was too afraid to take one of the meds that was to make me sweat or increase body moisture because of "certain types of cancer" being a possible side effect. When my house gets around 72 degrees I feel AWFUL!!!!!!!!!!!!! ON GOES THE AC and fans and I could crawl out of my skin. This is not menopause as I have that covered and us ladies do know the difference.
OMG>.what do you do? Is there help for me? Will I overheat and just drop as I feel sometimes when I wake in the middle of the night SO, SO, SO hot....that I almost pass out. Do you dress really lightly in anticipation of overheating under the blankets and how do I get ANY ER doctor to "Get it?" They make sure you are NOT critical in "their opinion" and out the door you go. I was just there with horrible chest pains. After making sure it was not a heart attack, or so they don't think so, out I went feeling afraid..........
Any help for me? Are ALL states having their doctors owned by hospitals now? I almost would move if I could for GREAT care. I just feel so afraid. I live alone.....and I don't get a lot of company....I have GREAT friends, but sadly they are older and not in the best of health themselves.
Thanks you all SO much for listening. OH I just started back on my plaquenil, do you think this could help my Sjogrens symptoms????????????????? (fingers crossed). I stopped it due to a bit of dizziness but I no longer have a car, so I am not on the road, and if it will help overall, I will work around that issue as long as it does not get worse.
Have a wonderful day!!
EllaBlue
EllaBlue, Welcome to the forum. You may find like I do, that it provides a connection to other people. It is a safe place to vent when you feel the need. This forum seem to provide support for me when I can not find it myself.
I very gradually work the temperature up in the spring and down in the fall. One degree every other day.
This is my standard welcome I hope that you find it useful.
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Hi Joe!!! Thank you SO very much!!!! I will, for sure, take a look at everything you posted for me later today as I have someone stopping by soon and I want to take my time checking things out.
It really helps SO much to have others understand, care and offer support.
Again thank you!
I hope you have a good day.
I appreciate your reply so very much!!
EllaBlue
Welcome, EllaBlue! Sorry you needed to find us, but I know you'll be very satisfied with the responses. Or, your money back! :)
You might want to sit in front of a fan all the time; that helps a lot. Also, I have a fan right next to my bed that I keep on all night long, even in the winter as my temperature jumps around.
I hope that helps make you more comfortable!
Sharon
Hi, and welcome Ella.
I am so opposite to you , I am freezing most of the time, its supposed to be Summer here in the UK, but most days I am still wrapped up in woollies and tights etc'. If I sit to watch evening TV, that seems to be the time I am most cold, uless I put on the CH, but I still have a fleecy blanket over me.
Its a pain as this even interferes with socializing, as I worry so just what enviroment I am going to be in, mostly I refuse invites out, soial life declined! So I do sympathize and wish I could say there is something that can help, but I can't. Would add to the advice, and recommend you sip cold water through out your day, to stop any de- hydrating. Hugs Dolly, x
Come visit me, Dolly. We are over 100 most of the time in July.
Isn't it unusually chilly there this summer, though? Sharon
Wow ! Sharon, I'm on my way,
Yes here in the UK it is unusually cold this Summer, I have never known one like it. We will all be suffering from low Vit D seeing so little of the sunshine. I feel sorry for all the people of different countries who are here in the UK for the Olympic Games.
Such a pity, I fear its gonna make for a long long winter ahead, Dolly x
Thanks everyone. I am always running low on Vitamin D. I take 50,000 IU to get me back up there but unless I take two a month, I get deficient. I am as white as a porcelein doll:( as with Lupus no sunshine for me. Gosh Dolly, cold? Can I have that for a week pweeeeeeeease :)
I am great about my water. I just have to be. I keep praying.....someday a cure maybe?
We can only hope.
I think I will start a new thread on the "Corporations" owning the doctor offices and see state to state just how common this is. I think it sucks. I do..........It makes zero sense to me, OH except the doctors are far better off because they can work 8-5 and go home. NO more after hours, no more on call. WOW.
Hi EllaBlue - welcome! :D
Oh yes, the broken thermostat . . I know it well! Here's a link to an older thread you might find right up your alley and can relate to: https://sjogrensworld.org/index.php?topic=10128.msg101674#msg101674
I never, ever, go anywhere without my trusty water bottle . . have water bottle, will travel. ;)
It must be difficult for you to cool off if you don't sweat at all. I have no problems with sweating - which seems strange to me, if I can sweat, it seems that my immune system could kick start and get rid of all the dryness. Unfortunately, it doesn't work that way. :(
I hope you find this forum helpful to you on your Sjogren's journey. There is a wealth of information here as we're a worldwide group of fellow Sjogren's patients. Please know, when you come here, WE GET IT! ;)
Bucky
I don't sweat... I pour my water on me... I drink it... I stay in the ac... BUT... I am always cold so i carry a coat with me to stores, restaurants... I get a lot of strange looks... when I take the Pilocarpin I can sweat a little and in fact that is how I realized I was not sweating... lol Too busy to pay attention to myself.
Shame..
Gayle
Welcome Ella Blue
My thermostat stays broken, but my husband gets hotter than me, and he always has a fan on him even when ac is on.
Wish you didn't have a reason to have to be here, but since you do we are glad you are. We are all here for each other.
susanep :)
Welcome! I wish none of us had to be here, but please know that you are not alone. I don't sweat either, even on the hottest days. Sometimes it feels like I'm baking inside my own skin. Sort of like a potato. ;) At that point it's hard not to panic, but the fear just makes everything worse. Sipping water...dressing in layers...sprinkling my skin with cool water...using lots of fans...taking a xanax...relaxing... It all helps a little, but not a lot.
Not sure if I can call it flares, but I do find that my body goes thru cycles. I have the problem chronically but can live with it. Then I will go through a period of time when it is so bad it's almost unbearable. Eventually, it improves back to the chronic stage. Then, like a miracle, I will get a couple days when I feel wonderfully normal! God, what a blessing! And then, I slide back into chronic again, etc. I'm constantly looking for a trigger that causes these good and bad times, but it seems to be just random. Although, stress and lack of sleep will certain make everything worse for me.
As for doctors: I got frustrated with my local rheummy and looked for the nearest university hospital (in my case, Un of Mich). University hospitals have the latest research and don't seems to be caught up in quite so much red tape. You might give it a try.
Good luck, and be kind to yourself.
Dee
Ellablue..
You sound just like me. Ok, are you in menopause by chance? or have some other hormone issues like thyroid? Ive learned over the last 6 years dealing with a complete hysterectomy and instant menopause. It totally screwed up my entire thermostat and vascular system, as well as made all my SJS/Lupus symptoms worse. This past year has been a nightmare..the dizziness, freezing, sweating, neuropathy pains, head pains, migraines, extreme hair loss, the list is a mile long. Anyways, Then it seemed i developed POTS, which can be from Sjogrens, and if your hormones are off, will make POTS symptoms much worse. Doctors told me if you can get your estrogen levels up and somewhat balanced, it really helps. Not sure if your on any hormones. Im trying to tolerate some bio-estrogen cream, but my body just doesnt like it. I have side effects from this as well. If you read alot about menopause and other hormone problems, could be related. I know SS does make everything worse, but to me, this hormone thing is the biggest culprit.
Gursie
I cannot tell you how wonderful it is to have SO many amazing folks care!!!!!!!!!!! Thanks you all from the bottom of my heart.
I had a totaly hyst. some 20 years ago, (kept one ovary) I was quite young and have been on hormones since. FINALLY the Climara Patch (Estrogen, Estradiol only) straightened that out. I tried every hormone out there. I was taking another kind, but it came off the market. I believe it was the Esgic Patch and they had problems with the adhesive. For me, the patch which I change once a week gives a steady dose around the clock so my hormones are not up down, up down. The estradiol pill was a NIGHtMARE for me... I mean Good Lord what a journey this has been. I do agree our hormones are critical to it all. And since the hyst. I would agree that my body temperature has never been the same.., even with my hormones probably as good as they could be now...
My thyroid is fine, although each time they test my Glucose it is a "wee" high but no-one ever says a word about it. There is another test...maybe AAPT or APPT...(gotta look at my records) that is off as well....
I get up each morning and if at all humid when I come out in the living room the ac has to go right on. Then I get TOO cold and turn it down some. Up down, up down.......I could only wish for central air but that is not going to be where I live. Anyway......I go to bed, set the ac, and then sometimes I get TOO cold, but if I set it lower I wake HOT as all heck. This is a rough one. And I cannot really enjoy going many places sadly. I love people, but it gets to be too difficult. I am sure you all understand. Outside cookouts are out of the question for me:(
I am learning everyone's name, so may I say a thank you to each one of you for all of this information, support and kindness. What a difference it makes in your day when others really DO GET IT:)
((Hugs)) to all...
Ella
Ella....so, are you still on the estrogen patch then? Our hormones can vary at anytime, esp estrogen. I was fine for a few years using the same cream, then, I felt dramatically ill and found out my estrogen levels dropped from 50 to 15, using the same cream, dosage, etc.
Everyone woman has their own comfortable estrogen level as well. Do you have hot flashes at all? just curious? I have same symptoms and this has become debilitating, esp with the POTS. Have you read about POTS? maybe this is something you have as well? common with Sjogrens.
gursie
Here in Colorado the temperature can go up or down as much as 50 degrees in 24 hours, although it does not do that every day. We dress in layers. Lots and lots of layers. Start with long underwear and work our way up to a down coat, depending on the season. Now I get too hot more, but before menopause, I was usually suddenly cold after eating, and would put on my jacket or even outer coat, which was always on my chair, never in the coatroom. Actually, the hotter it was outside, the heavier the sweater I would carry when I worked or spent a lot of time in air conditioning.
So, if it got really cold (before menopause) in the winter start with pantyhose, long underwear, a couple of pairs of socks, pants of heavy weight, turtleneck, blouse, blazer, sweater, outer coat...
Remove as necessary!
Sadly, in the hot, hot summer, there are only so many layers that one may legally remove in public...
Sharon
Hi there Ella Blue-
You sound just like most of us. I am cold and hot and do the thing with the thermostat. Some days, I've had the heat and A/C on at different times. My hubby does not appreciate this and I don't blame him. If we go somewhere like out to eat, I take a sweater or sweatshirt because it's usually chilly. I live in Michigan, but we've had temps in the 90's and 100's all summer. Tomorrow is to be 97@.
Especially in times of much temp fluctuation, I will wear something like shorts and tank top made of cotton to bed, and then maybe put a pair of long sleeved/legs pajamas or even a flannel nightgown over them. I usually get too hot in the middle of the night (hubby is his own heater) and will end up taking the top layer off. This way, I don't have to get out of bed and look for other things to wear.
If you are taking hormones and still hot.......why are you taking them? This was not really clear to me but it's late and I probably didn't read it very well. If you are still roasting, why take hormones when there is still some controversy about them? I have to throw a hint here-that is that I am a breast cancer survivor of 5 years who took the HRT for over 20 years and at 60ish was found to have cancer. I realize some drs don't go by the "rule" and some do. But for sure there is no use of taking anything if it doesn't help you? I had to stop my HRT cold turkey as soon as my biopsy came back. This was shortly after I had the SJS diagnosis and I didn't know which end was up for a long time.
Try the cool/warm pajama-nightgown thing. I guess you could go from flannel to naked but I'd never sleep like that. I realize some ppl do. Lucy
Right now, im even wearing calf warmers and I have to wear my fleece lined boots all summer. I also have to have my heating blanket
on all summer, to mostly cover my legs. Sometimes I wake up freezing cold, while other times I feel like Im on fire. I havent been able to take a shower in 2 years, only a sponge type bath because I get so dizzy. I guess this is part of POTS and the raynauds, plus my major hormone issues. As soon as I put my hormone cream on, my body temp changes in a matter of minutes. Either I start sweating, or start freezing? I think its all the hormone flucuations in my body to be honest..been a nightmare to figure out.
Gursie
Hi everyone...well my computer went on a "thing" for a bit. It kept shutting off. My grandson who is very good with it, I THINK may of had the blanket tucked under it and it caused an overheating maybe? You know the ac is just at wow here right now and his legs get cold. Anyway....I have been dying to get back here! grrrr
I don't know what POTS Is? can someone tell me.
The hormones for me seem very much needed. We tried to cut back and I had a lot of hot flashes. My warm/hot/overheating seems totally opposite from a hot flash.
Sometimes if I wake up baking, I can sit that way for an hour. I feel so sick to my stomach, I am SO, SO hot and I won't sweat???
I am so afraid that I will overheat and die. Does anyone understand just what happens? Are we in danger? I would feel better IF I knew that the power was lost and it got really hot that I would not pass out or be in any danger. It is on my mind all of the time. When I hear powerful thunderstorms I get really afraid of losing power and my ac at 97 degrees and humid:(
I take estradiol only. The last study was that it may decrease breast cancer by 3 percent. I heard this on a news report about a month ago. I did hear that estrogen/progestin was a BAD thing. Where I had a hyst. I never took progestin, except years and years ago a doctor tried premarin on me and I was sick on that and never took it again, so it has always been straight estrogen.
I too went through a cancer scare and my heart hurts so much for women that get that news. I remember how frightened I was, and I know how blessed I was to have a benign biopsy. As I am replying here I apologize because I cannot remember the name of the lady here that responded with breast cancer. Thank you SO much for the information. I will bring this up again at my gyno appt. in September. I am so glad (((you))) are okay and here with us.
Thank you all again. Hopefully my computer will behave now! I thought OH GOSH NOT NOW! Not that there is a great time for our computer to act up!!
((HUGS)) to everyone!!
Ella
can you search the POTS info on the web...also, you might need your estrogen tweeked a bit...all the hormone doctors I told me said that
this hot/cold flucuations are part of the hormone issues..I get the same thing with the stomach etc. It seems you maybe having more flucuations than you used to..maybe you need more estrogen? do you know what your levels are? next time you go to the doc, have them check. Did this just start recently? just curious?
gurs
It may be me you are referring to :-*
QuoteI too went through a cancer scare and my heart hurts so much for women that get that news. I remember how frightened I was, and I know how blessed I was to have a benign biopsy. As I am replying here I apologize because I cannot remember the name of the lady here that responded with breast cancer. Thank you SO much for the information. I will bring this up again at my gyno appt. in September. I am so glad (((you))) are okay and here with us.
I understand with hormones, there are a million opinions and they differ greatly. I have no special knowledge except for me. I know i took both est and prog for 20 years, then cancer. Now no hormones of any kind because my cancer was a hormone fed type. My own drs are very divided on whether the HRT causes cancer or not.
Thank you eyeamdry. I like to refer to the person so I am sorry about that. I appreciate your information very much, I really do. My women friends and I have these talks/debates and share information on all kinds of things. I think the amazing thing about women friends (not against men) is that we really get into the knowledge of things, if we can. I am always saying "Did you see???"
I think the jury really is out. I know the progestin was just not good for us or at least the study was stopped because it was that dangerous.
I am SO happy you are here to share your story with other women.
((Hugs)) and thank you again:)