I am a 35 year old mother of two boys was once active, now it is taking all of my might to even get up t go too work. It all started when I was sick with an upper resp infection which I had to go to the emergency room; the docters stated that I had bronchitis and prescribed an antibotic also I was having severe pain in the lower rib section which I thought was from the cold and lumps in the same area. They did not mention nothing about the pain under my ribs and they stated that I had fatty tumors (lyphomas). Well that was the beginning of now a never ending series of doctor visits and pain. Now I am hurting from my head to my toes, everything hurt and I am very fatigue, feel like I am in a fog and I am starting to have temp memory loss. Friday I was in so much pain I had to call my doctor to precsribe me something stronger than naproysn; so he called in a order of methylpredlisone 5mg, which immediately helped but now after taking it for a week it is not helping as it did earlier. I have a dr appt tomorrow, a gastronalosist appt on the 27th (cat scan) and 29th (endoscopy). My primary doctor did several test on me and have not came up with anything as of yet. I did find out that I had mono sometime in my teenage life and epstien barr virus, he did see a little trace of protein in my urine and I am anemic. I do have hypertension which I am on a diurectic for. I just found out that I have high cholesterol but I am not overwieght. I need some help, I feel like an old 90 year old woman. I am in constant pain and fatigue..I am I the only one going through this? I have been researching and I have some of the symptoms of lupus. Now I am getting them cold sores in my mouth.
I can certalinly sympathize. I am a 42 year old female with Lupus (SLE), diagnosed almost 11 years ago. My situation sounded simular to yours prior to being diagnosed. It was a long up hill battle trying to find out what was wrong with me. Lupus has a bad habit of imitating other conditions and doctors tend to go with those other conditions first or, like in my case, tell you it is all in your head for many years. You need to see a rheumotologist. This doctor will treat your pain which is most likely being caused by inflammation. There are blood tests which can help in the diagnoses of Lupus but they are not dependable and many have lupus although they do not have an elevated ANA or a high normal Sed rate. When I had had enough of no one listening to me and having to go from specialist to specialist I first prayed for strength and then got to work. I began a journel. I went back as far as I could remember to my childhood and recorded everything I could remember such as illnesses, and allergic reactions etc. I took it to my doctor (new to me at the time) and gave it to him and said I refused to believe it was in my head or that I had fifteen different conditions, there had to be one culprit ! I was sent to a rheumotologist and after a couple of months had a diagnoses. Being diagnosed is of course just the beginning. You have to be diligent. Autoimmune conditions are not death sentences, whether it be Lupus or MS etc. but it is a life change for you and your loved ones. You must research all specialist before you see them and educate yourself as much as possible. Begin with always getting a copy of all lab work and tests done. Keep a file which you can travel with from doctor to doctor. Also research all medication you are given. Know what the side effects are and on the same token think about whether or not the chance of side effects is worth you having a quality of life. If you read all the side effects and let them scare you off - you will never take anything, including an asprine. Even before a diagnoses of any kind, it helps to join a support group, in your case one for chronic pain. Never, ever give up, always forge ahead. Learn and respect your limitations. I know with little ones it is not easy, my girls were young when I was at my worst before being diagnosed. Good luck and God Bless.
I have had lupus since 2000 and could barely do anything I had no energy and everytime I would ask the dr. they said there was nothing then I discovered on my own that biotin that you can get at walmart or local drug stores . It's 1000mcgs spring valley brand gives you energy and it's safe to use. At first I took a whole pill and I was up all night long .It gave me extreeme insomnia. So then I bought a pill splitter cut the pill into 4 pieces and take a 4th a day in the morning. It is like a miracle pill. It is also helpful with hair skin and nails. I have not had any side effects and I seem to have a side effect to everything I take. I also found that accupunture has helped me too.
thanks for responding, I went to my dr appt and he is dumbfounded on what is going on with me. he stated since I responded well to the methylpredlisone it sounds like I have lupus or sclerderma. I researched what sclerderma and the symptoms does not sound like what I am experiencing. He stated that now he want me to see a rhuemy, also he ordered some more blood work to tet my ana and sed rate again, which I went saturday at the lab. I am sooo tired of hurting, my life has dramactically change in a blink of an eye. I am in constant pain, he precribed me prednisone 10 mg taking 2 a day so I guess that is 20 mg day. Now on top of me getting test from the gastronologist my doc has ordered test to get a chest sonagram and a stomach sonagram that is May 5th. I hope when I go to the rhuemy I will get a diagnoses.
I have been dealing with muscle pain, major muscle cramps (toes, feet, calves, legs, rib cage, between shoulder blades, neck, lower back, hips), joint pain, inability to sleep, brain fog, inability to concentrate, heel pain, fatique, headaches, I get sinusitis frequently. I have some muscle atrophy in my right arm (recent, last 3-4 weeks), I have acid reflux (for years) and IBS (diagnosed 20 years ago). My skin sometimes feels as though the lightest touch is going to send me straight up the wall. I tire easily, I have shortness of breath after minor exertion amd I feel like crying most of the time. (The crying is a biggie for me because I am not a crying kinda gal). I have neck pain and pain between my shoulder blades that has been going on for years. I had a spinal fusion 9/11/2000 and was told that should take care of my neck problems. It did not. I have hardly any range of motion in my neck.
I also have a stressful job, a mountain of bills, an alcoholic husband that has the emotional maturity of a 12 year old. Between the two of us we have 4 kids and 5 grankids with a sixth on the way. I love the babies but I can barely pick up even the little ones.
My husband alternates between denial and "You need to see another doctor". I am taking him to my next appointment. I think he thinks I am wanting to blame a lot of things on Lupus that shouldn't be. Either that or he just flat out doesn't believe I have it. I think a lot of his reaction is due to fear on his part that I will become totally disabled and that we will lose everything we have worked so hard for.
Most days I get around ok, but here lately getting out of bed seems like totally unreasonable expectation. And then driving through Houston traffic 25 miles each way on the Gulf Freeway seems totally impossible. But I get out of bed, I drive the freeway, I do my job, (somedays I do it better that others.) I come home and look at my messy house and plop my big butt down in the closest chair and try not to cry. I get up, cook dinner, wash clothes, watch a movie and it's off to bed. I don't feel like hanging out with family or friends unless they come to the house. I can hardly ever get myself out on the weekends unless hubby insists. I am just so tired and so stressed. I am usually not a crybaby, but I feel like one now.
I guess this was less of a question and more of a plea for undersanding and support. I don't feel much support right now and I could really use someone to lean on.
I was in the military when I was diagnosed with Lupus the first time. It took them 3 more years to officially decide. In that time, I think I saw every kind of doctor, from shrinks to ortho, and none of them could figure out what my problem was. Meanwhile, the military peeps kept telling me it must all be in my head and what a weak, manipulative, bad person I was to go on pretending I had all these problems. I definitely know what it's like not to be believed, and it *****.
I had a doctor tell me one time that I had the body of a 76 year old. I was 22, supposedly in the "prime of life", so that really hurt. Now I'm in college and have friends who take many more classes than me, they work full time, and go partying at night. Many times they expect me to do the same. I just can't. I used to try to do everything like a normal person, and it made me feel even worse. I've had to realize I don't have the luxury to be... normal. I can't go out and run 5 miles a day like I used to; can't pull all nighters; I can't even be independent and live by myself; I can't even open a danged can of peaches 'cause my stupid hand won't close around the can opener! (sorry, ranting). Anyways, for somebody who joined the military to become self-sufficient, this was hard to accept.
It was only after I found friends with problems like mine that I finally started feeling like I wasn't stupid, weak, lazy or crazy. I have friends with Fibro and MS and we compare notes all the time. That also gave me the strength to tell people off who don't believe me. :) (I hate it when it's the doctors who don't believe you - who go off the blood tests and not how you feel.... silly doctors. And why is it that the doctors never understand that they're partly to blame for how we feel - all those danged tests they put us through, they sure don't make us feel any better! sorry, 'nother rant)
So, anyways, I just wanted to put some encouragement and understanding out there. Lupus (and Fibro, IBS, ulcers from the drugs, gerd, etc) *****. Here's a mental hug and an imaginary fruit smoothy (my replacement for chocolate). :-)
I completely know what it's like. I was diagnosed with Lupus 2 years after my second child and 4 years after my first. I was going to the OBGYN to see why I was feeling so crumby, but also asking if I was cleared for a 3rd. No more babies for me.
I can hardly take care of these precious children, much less enjoy them. I count down the hours until nap and bedtime. Isn't that sad? There is absolutely NO WAY that I could ever have a full-time job outside the home. Does anyone know if my insurance will pay for someone to help me? I've been on an assortment of drugs and nothing seems to help. Does it ever get better?
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