Leg cramps and hot flushes
Posted , 11 users are following.
Hi I have the usual symptoms of dry eyes and mouth etc but wondered if anyone has leg cramps and hot flushes or not related at all. Thanks
0 likes, 27 replies
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Notes on Leg cramps and hot flushes
jennifer09136 amanda81171
Posted
Hi Amanda,
I don't, and am not aware that either are particularly associated. But SS has a huge spectrum of symptoms and every SS person has a different cohort of issues so others may have a different experience. It often depends on eaxh person's co-exisiting diagnoses - some also have other auto-immune conditions like Lupus or rheumatoid athritis which can change the picture for each person.
mandy95 amanda81171
Posted
Yes I also use to get them. Last week at the RA Appt Dr told me that I also have Fibromyalgia and that around 50% of Sjorgrens people do.
Regards
Mandy
kristyk amanda81171
Posted
Hi Amanda, I have Sjogrens and Fibromyalgia and Lupus. I suffer from leg cramping that is so bad it keeps me up at night and sometimes I can hardly walk. My rheumy suggested compression hose for circulation. I tried and when I'm home and my legs hurt so badly I wear them because they do help a little. I also had a arterial dopler test done to make sure blood is flowing from my legs back up to my heart. I. was fine. We all suffer from so many different issues. I'm not sure if this is what your dealing with but you never know right? I hope this helps a little. By the way no one has figured out why my legs hurt so badly at times. Most likely its the Fibro the docs say. Ibdo take pain meds or muscle relaxers when it gets bad.
God bless you and good luck
Kristyk
margaret22116 amanda81171
Posted
Yes I have that too. I don't have Sjogren's but Behcet's whoch is similar. These symptoms are very common with vasculitis.
katalin59838 amanda81171
Posted
john75639 amanda81171
Posted
One way to determine if you have a kidney disorder is to check your urine. If soap suds are in the toilet, or bubbles, check with your doctor immediately. Urine should not have any bubbles when you pee. Bubbles means you are producing protein or proteinuria in your urine and your kidneys are not working correctly.
morelia100 amanda81171
Posted
I have Sjogrens and when I was first diagnosed, I suffered from leg cramps (charlie horses) at night mostly. I also woke up in the middle of the night for over 30 years because I would become overheated. Never knew this was a symptom just thought it was normal for me. I'm glad to report that I have no more cramping,and for the first time in my life, starting about two years ago, I sleep through the night without waking up. I don't have any one thing I can attribute it to, but I can tell you that upon being diagnosed, I did change my diet soon after, added moderate exercise, meditation when I could, tried to control my stress and reduce my exposure to as many chemicals as possible (including medications which can be hard on your liver). As you may know, if there is damage to any organs it may be necessary for a person to stay on medications, but you can determine that with help of the doctor. I still have mild dry eyes from time to time and mild dry mouth, but I'm not perfect with my diet or exercise. When my symptoms start to emerge (such as sore joints), in try to be better with my diet and lay off mostly sugar and wheat and dairy. Usually that helps. I have also noticed a correlation to my hormones but haven't figured that one out yet. Hope some of this info helps.
amanda81171 morelia100
Posted
katalin59838 amanda81171
Posted
I have a tear plug put in every 6 months , and it's helping with the dryness .
morelia100 amanda81171
Posted
I was diagnosed with Sjogren's through a blood test given to me by a Dermatologist — the diagnosis made sense, since I seemed to have all the classic signs. In the beginning I also had RA -- but that has been in remission for about 2 years too. I did not take any medications aside from progesterone to help regulate my hormones. I have also used vitamin supplements which were recommended to me by the naturopath I have been seeing -- I am currently taking vitamin D, Vitamin B complex, Ferronyl iron, DHEA and BCQ. I have my blood tested every 3 to 4 months to see how my levels are. I use a natural solution for eye drops called similsan (sp?) for my eyes. For my mouth, I just make sure I keep it super clean, floss and brushing daily. I use a "natural" mouthwash sometimes when my mouth is dry and that seems to do the trick. I use an organic toothpaste that doesn't have any flouride in it as I discovered it was actually irritating the lining of the inside of my cheeks. I also read that chewing gum gets your stomach to secrete acids because it thinks food is coming -- so now if I chew gum it's usually around meal times. But I know that there are not many better options. I did find an organic ginger gum that had very little sugar, if any, and that seemed to work just as well. Another item that helped me with dry mouth was coconut oil. Tasting a little lemon or lime just to get the saliva going. But now my mouth is only mildly problematic and generally only at night. You can see how complicated this can be -- there is no one or right answer for everyone. You just need to keep trying to find what works for you. I feel for you. I wish I could be of more help. I hope that you find the answers you are looking for with your consultant.
amanda81171 morelia100
Posted
aitarg35939 amanda81171
Posted
Hi Amanda
Magnesium supplements help many folks avoid charley charley horses - leg cramps. I don't suffer much from those tho I still get the occasional leg aches. Had times of those growing up tho no one else in my huge family had them.
I suffer greatly from dry mouth and eyes. I take evoxac/civemeline & i use non-medicated moisturizing eye drops at least twice daily. Regular toothpaste dries my mouth more so I use special dry mouth paste & rinse. The latter is important for 2 reasons: water rinse reduces the moisturizing effect of the toothpaste, and the rinse extends the beneficial effect of the paste & rinse especially if you wait 30 mins before eating or drinking anything.
As to the hot flushes, it's funny you should ask. I started taking evening primrose oil caps earlier this year hoping that they'd help me get off the evoxac just for the sake of getting off. After a month I noticed fewer hit flashes. After 2 months I stopped due to a bad side effect - and the hot flashes came back, just in time for Texas summer heat. I consider this highly unfair as I had a total hysterectomy at 27 and went off a minuscule dose of estrogen 8 yrs ago. Hello Universe! Hot flashes aren't supposed to be permanent! Unless of course they're tied to something other than menopause?
Due to dry mouth since childhood I've chewed tons of gum. With the evoxac I only chew it when exercising or out in public. Dry mouth equals stinky mouth so gum cuts way down on the folks jerking away from me as soon as I open my mouth. When I can afford it I chew sort gum which is extra beneficial.
I tried the evening primrose oil because I know someone whose dry mouth/skin/eyes disappeared with it.
amanda81171 aitarg35939
Posted
Thanks so much that has been really helpful. I have to say I have been using evening primrose for ages and doesnt help with hot flushes at all. As everyone says it semms to be trial and error but will try your ideas. Take care.
john75639 amanda81171
Posted
I usually suck on three lemon drops, again it varies from person to person
john75639 amanda81171
Posted
Has anyone checked to see if their hormones are normal. Men have both hormones, male and female. If they are out of whack, hot flashes can occur. When my hormones were at a low range, I got horrible hot flashes.
Sorry to report that I don't have Sjogren's. But have haven't had a test for it.
For dry eyes, I don't use liquid eye drops. I use the gel form, it helps with my dry eyes. For dry mouth, I sometimes use Biotene, that is what it is called in the US. It is an over the counter product, usually where the mouth washes are located. I rinse my mouth and spit it out. I also use the candy lemon drops. Or I drink lemon water. Lemon will help with dry mouth. I don't know if limes will do the same, never tried it. My haemodialysis center recommended lemon drops. I hope this helps.
morelia100 john75639
Posted
My naturopath has made it clear that having a hormonal balance is an important part for recovery. I have also read some theories that elevated levels of female hormones may be a trigger or cause for autoimmune diseases. I have also read in books that often when there are chemicals that do similulate hormones -- it is usually female hormones that are simulated. This means, for example, like the case of plastic bottles which got too hot in the sun, and released chemicals similar to estrogen causing the persons drinking from those bottles to have elevated female hormones. I believe this happened in Puerto Rico to a group of girls who were developing much faster than they should. I personally have noticed my symptoms changing depending on the time of the month and I suspect that it is related to my symptoms, but I haven't been able to pin point it yet. My problem has always been I have had plenty of female hormones but not enough male hormones, which is why I am currently taking progesterone. I'm trying to balance my hormones. So far, it's been helping. I hope what I say doesn't make anyone panic. I think there is no way for any of us to be 100% free of chemicals -- but I am of the opinion, that when it is possible to make a change, I should make it. I believe one of the biggest things that helped me was changing my diet. Also, I agree with the lemon water (although you should remember that citrus has acids that can over time damage the enamel of your teeth). I also like vinegar drinks which although acidic, helps with digestion. I have been eating umeboshi plums (Japanese pickled plum) to help with digestion and homemade pickled foods -- these usually get the saliva flowing as well.
aitarg35939 john75639
Posted
Hi John
I'm in the States too and use Biotene products. Lemon juice is what medicos use to provoke saliva, and when it takes 10 minutes to provoke saliva from one's last remaining glands ,,, Lemon drops worked for me back in the '90s but both before and after, chewing sf gum works better. With lemon drops or any hard candy, it's the sucking action that produces the saliva. With gum it's the chewing except that the spry gum has more benefits for teeth & gum. We're all worried about the dry mouth impact on teeth & gums, you may be also.
Are you on private insurance? Medicare won't pay for hormone testing. I know mine are out of whack.
amanda81171 john75639
Posted
margaret22116 amanda81171
Posted
amanda81171 margaret22116
Posted
john75639 aitarg35939
Posted
I have TMJ, so I don't chew gum. My jaw hurts. I use acupressure to relieve the pain that I saw on utube on my jaw
Normally I eat frozen grapes when they are available.They become like frozen popsicles. Although I am diabetic I suck on regular hard candy because most sugar-free candy can cause diarrhea .
But mainly I suck on frozen ice.It is better than drinking cold water, for example, ice chips. They fit easily into my mouth. Have you tried this
john75639 aitarg35939
Posted
I have medical insurance that allowed preexisting medical problems before OBamacare in the US. I worked in the Federal Government and our heath insurance is under the FEHB. So my hormone deficiency was discovered back in 1982. I have had at least 10 different blood tests back in 2014 to find out why I had low platelets, but all of the blood work came back as normal per the hematologist. So I was lucky to have great health insurance, even when I retired. The way it works in retirement is-- I have the same benefits that non retirees have, those federal employees who are still working. Those who are still working, their health insurance is deducted every 2 weeks, while mine is deducted once a month from my retirement check. I have 47 chromosomes, so I am a xxy male, so I have many autoimmune disorders. I have listed them on this website under xxy male, am I unique. I try to be honest regarding my health problems because not all xxy's have the same medicalevel conditions that I have. I am surprised that Medicare won't pay for your testing. I will have to check my Medicare booklet to check on it.