| T O P I C R E V I E W |
| naturemaiden |
Posted - Aug 15 2015 : 5:13:42 PM
Hi everyone,
I was diagnosed with SLE lupus about a year ago. After spending years with recurring pain in which tests would always come back negative I had become frustrated. After numerous visits to different doctors one referred me to a rheumatologist. after much blood work and a positive ana and ena tests and ruling out other things, the dr felt it was sle lupus. after researching and learning about it after the fact, the pains and fatigue started to make sense. today I am finally starting to feel slightly better and suffering since last thursday. I felt so terrible yesterday I could hardly walk from the weakness, the shooting pains down my legs and into my knees. my hands hurt a lot and the dr says there is swelling. in a way I think im still in denial not believing its really lupus but the signs sure are pointing that way. when I look back throughout the years of episodes I've had of extreme fatigue that would come on, the general feeling of awfulness, sharp shooting pains, I suppose I have to accept it. it seems the flares are often as last week it lasted two days. when outside I cant work for long periods of time or I get extremely drained, so I do things in stages. I dont get the rash that they say sunlight can cause. its frustrating because ive always been active, such as in the healthcare field and then into horticulture. being outside is what I love. I dont know how to deal with this. yesterday I was so cold in my house I wore a long winter sweater. a couple of hours later I was warm. my hands hurt bad in the winter and my body cant tolerate cold, I will get spasms in my back if im in the cold too long. before I was ever diagnosed with lupus I was told it was fibromyalgia which I did not accept. the pain is mainly in my hands. hips, down my legs and knees. I even saw a cardiologist because I thought something was wrong with my heart, which is fine. I feel as if I was hit by a truck. I refused the meds the dr wanted to give me because of the side effects I read about, so I take nothing except for a couple of ibuprofen when I need it which sometimes help. sometimes I get the most horrible pain in my hip joints that it stops me in my tracks. it feels like a grinding, and it ends as quickly as it starts. my eyes have always been very sensitive to light even on cloudy days. about a year or so ago I developed the dry eye issue and now use lubricating eye drops everyday. yesterday I was so nauseas I barely kept my food down. ive noticed im starting to become forgetful. I also noticed that my hair seems to be falling out. i missed my last checkup because I felt it was pointless, but now with the frequency of the flares I feel I need to see the dr. sorry for the long post, but this is starting to depress me and I need some guidance. I just turned 46, and im scared. I use to jump off the back of my pickup truck, haul 40lb bags of mulch and now sometimes I can barely stand.
I wanted to know if anyone else has been diagnosed with SLE lupus, their symptoms and how they cope. thanks,
Connie
http://www.naturemaiden.com/ Handcrafted Soap & Candles
http://saratoga-rose.blogspot.com/ My published books & other writing.
http://modern-day-laura.blogspot.com/ Filled with everything I love!
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| 11 L A T E S T R E P L I E S (Newest First) |
| naturemaiden |
Posted - Aug 17 2015 : 05:31:46 AM
Kem, I try LOL
http://www.naturemaiden.com/ Handcrafted Soap & Candles
http://saratoga-rose.blogspot.com/ My published books & other writing.
http://modern-day-laura.blogspot.com/ Filled with everything I love!
http://www.thriftyfarmgirl.com/ Vintage Sewing Machine Parts
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| Cozynana |
Posted - Aug 17 2015 : 04:31:45 AM
Connie, funny thing, I just looked at your thriftyfarmgirl.com pages. And you have a live feed banner. It has a report that a person from Phillipsburg Ks looked at your page minutes ago. Too cool, that is about 60 miles from where I live. You get around girl!!!!!!! Good for you. |
| Cozynana |
Posted - Aug 17 2015 : 04:28:51 AM
I don't know if I understand your question about occurring more than once a month. I can tell you many Lymies have worse symptoms around the full moon, crazy as that sounds. Know it is true, because when I was really sick I dreaded the full moon because I would be much sicker. Once you have Lyme it really doesn't ever go away. It can go into remission, but can rear its ugly head in the future with a vengeance. And a person can be re-infected by new tick bites, or contract other new co-infections with new tick bites. It is scary, minimalized to the depth and scope of the severity of complications due to Lyme disease. As you know if you have Lyme at your house it is nothing to mess around with. How do your family members cope with it? What kind of treatment are they doing? |
| naturemaiden |
Posted - Aug 16 2015 : 11:03:07 AM
Thanks for the info Kem, I am going to look into it. Sometimes doctors miss the simplest things. My younger son was having chronic throat infections for over 2 years. Kept taking him to the dr. Cultures were always negative. Antibiotics did nothing. One day I thought to myself that he should see an ENT Doctor to see if his tonsils should come out. Sure enough he needed his tonsils out and has never had another throat infection! Not even once did the primary doctors office ever suggest I take my son to an ENT. We put too much trust in doctors and their diagnoses. I believe the lymes is worth at least looking into again to rule out for sure.
Not even for myself after nearly 10 years of symptoms has any doctor sent me to a specialist. It took a 2nd opinion from a neurosurgeon to send me to a rheumatologist. (my original neurosurgoen did my discectomy for a herniated disc in my neck). You see I also have 3 herniated discs in my lumbar area and was convinced my symptoms were from the discs. I had went back to my original neurosurgeon twice complaining of pain and he insisted it was fibromyalgia which made me angry, because I didn't believe it.
I wondered, would either lymes or lupus symptoms occur more than once a month? Wouldn't you have to be re-infected with another tick bite to get lymes again?
http://www.naturemaiden.com/ Handcrafted Soap & Candles
http://saratoga-rose.blogspot.com/ My published books & other writing.
http://modern-day-laura.blogspot.com/ Filled with everything I love!
http://www.thriftyfarmgirl.com/ Vintage Sewing Machine Parts
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| Cozynana |
Posted - Aug 16 2015 : 10:58:14 AM
You could have lupus and Lyme. The thing with Lyme is that you have multiple conditions/diseases. I am really suspicious when you tell me other family members have it. I would ONLY do the Igenex test from California. I went to Mayo for 10 days and they missed my Lyme. I also would only go to a LLMD to get tested. I hope you can get some help regardless what you have. Lyme is miserable. I have had it for decades, diagnosed in 2013 and still fighting symptoms. wishing you the best. |
| naturemaiden |
Posted - Aug 16 2015 : 07:39:41 AM
Hi Kem,
I though maybe it was lymes too but the test was negative. I wondered that myself, especially having always been on outdoors person I wondered if it was possible that I was misdiagnosed. I think the test is only effective when you have symptoms. My older son has lymes and he had the bulls eye rash, i've never seen it on myself although i hear it doesnt guarantee anything. my ana test was positive which indicates lupus but not 100% guarantee. I think the next time i'm hit hard with symptoms i will immediately go to the doctor and have the lymes re-checked to be sure. my husband had lymes too and even developed bells palsy for a while, but i think you get achy. my pains are mainly in the joints, though even today i had pain running down my legs- not sure if that makes a difference. when i was real sick last thursday and friday i felt almost like flu symptoms like i had been hit by a truck, and i felt like this for 2 days a week or so ago and then ago a couple of days ago it hit again. i am going to keep a detailed record moving forward. i wouldnt be surprised if it were lymes or another tick born disease.
http://www.naturemaiden.com/ Handcrafted Soap & Candles
http://saratoga-rose.blogspot.com/ My published books & other writing.
http://modern-day-laura.blogspot.com/ Filled with everything I love!
http://www.thriftyfarmgirl.com/ Vintage Sewing Machine Parts
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| Cozynana |
Posted - Aug 16 2015 : 07:12:47 AM
Connie, Have you ever been checked for Lyme disease? The symptoms you described are also Lyme symptoms. Also, Lyme is huge in the New England States. You have some really good doctors up in that area that treat Lyme. What if you are misdiagnosed? |
| naturemaiden |
Posted - Aug 16 2015 : 07:09:12 AM
Cindy,
the side effects of the meds scare me, so i just tough it out. Depression is hard, i've dealt with it in the past and i've taken meds for it that made me numb, so i went off them. Years ago I tried several different meds which accomplished nothing really. I don't take anything anymore. It seems i want to do it on my own somehow. Luckily depression is not an issue for me anymore, and hopefully it won't be again.
http://www.naturemaiden.com/ Handcrafted Soap & Candles
http://saratoga-rose.blogspot.com/ My published books & other writing.
http://modern-day-laura.blogspot.com/ Filled with everything I love!
http://www.thriftyfarmgirl.com/ Vintage Sewing Machine Parts
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| naturemaiden |
Posted - Aug 16 2015 : 07:04:18 AM
Sara I'm so sorry about your dog, I know how hard that it, I still cry over Ollie and Daisy, I can't believe next month Daisy is gone a year already, and Ollie is gone over 6 months.
I am trying to take it easier but it's hard for me to sit still. I'm feeling little better today so i'm trying to catch up with things here, but I'm not going to obsess and do everything that needs to be done because I know i'll pay for it. I use to care for an MS patient so I have a good idea what your going through. I seem to be off balance too sometimes and I wonder sometimes 'what the heck?'.
http://www.naturemaiden.com/ Handcrafted Soap & Candles
http://saratoga-rose.blogspot.com/ My published books & other writing.
http://modern-day-laura.blogspot.com/ Filled with everything I love!
http://www.thriftyfarmgirl.com/ Vintage Sewing Machine Parts
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| YellowRose |
Posted - Aug 16 2015 : 06:55:33 AM
Connie, so sorry to hear you are having such a hard time. I don't have lupus but I do deal with MS which has some of the same symptoms. Chronic fatigue is my biggest thing; followed by balance issues, optic problems, odd headaches, numbness, and the list goes on.
One thing I do know that stress will bring on symptoms or aggravate them. I have learned to 'baby' take care of myself. If I need peace & quiet I allow myself to have it even if it means not doing something I want or need to do. I fare better when I do what my body needs.
MS depresses the body so in turn it also depresses the brain. Because I know my depression is MS caused I deal with it the same way I handle my body. I give it plenty of rest and to my best to live my life in peace. My doctor told me that since my depression is mild to just deal with it without meds.
For the last week I have been dealing with the lost of my little dog Maggie. She died after a brief illness. I knew it would bring on symptoms and it has, but I have learned how to cope with MS so though it has been hard I am seeing my way through it.
When dealing with any chronic illness we have to strengthen our coping skills and develop new ones. We all deal with things differently so what works for one may not for another, but we can learn from each other.
Sara~~~ FarmGirl Sister #6034 8/25/14
Lord put your arm around my shoulders and your hand over my mouth.
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| prariehawk |
Posted - Aug 15 2015 : 6:50:04 PM
Connie--I'm so sorry you're experiencing this suffering. I don't know much about lupus but I know it's important to take medication to control it. I don't like taking medication to control my depression but I don't like even more what happens if I don't take it. My meds. make me sensitive to heat and sunlight which is frustrating cause, like you, I like to be outdoors. I live for fall and overcast days when I can be outside as long as I want. I also experience fatigue, which one doctor says may be the medicine, but another doctor says is the depression--recently I discovered that my blood pressure sometimes drops to dangerously low levels and I think that's what makes me feel tired. The doctors don't know why my blood pressure gets so low. But it IS very frustrating so I understand how you feel. I don't like taking medication but I tell myself that God allowed us to invent medicines for a reason--and lots of meds. are based on plants so they're not entirely unnatural. I live in an area where there are lots of people who are members of the Christian Science faith and they shun ALL medicines. I know people who were raised as Christian Scientists and they watched their siblings die, and almost died themselves, cause their paretns refused medical intervention. They're no longer members of that faith. I know you need to vent and feel free to do so but please consider what your doctors recommend. Having an illness that limits you in any way is very difficult to accept and your natural reaction is to deny it. I will keep you in my prayers and I pray that you feel better soon.
Cindy
"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit
"In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers
Visit my blog at http://www.farmerinthebelle.blogspot.com/ |
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