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Old 05-10-2009, 08:06 AM
 
Location: NJ/SC
4,286 posts, read 12,946,607 times
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Has anyone been diagnosed with Fibromyalgia and found out it was really Lupus? I was recently diagnosed with Fibromyalgia but even though the Lyrica is helping with some of the pain, I feel like something else is wrong. Also, since being diagnosed it seems every other person I meet has the same thing. I drove my dr. crazy by questioning him because I didn't believe that's what I had. He feels 100% that's it but I haven't spoken with him about Lupus yet. The only reason I'm thinking Lupus is because I was telling someone else I know that has Fibromyalgia and they didn't have half the symptoms and problems I have had and then mentioned Lupus. I did some research on it and I have most symptoms, plus for the last week I have redness under my eyes and now it's spread to my eyelid. I'm so upset, this just keeps getting worse...when one pain goes away another pops up, when one problem stops, another begins. Is this just life after 40, am I falling apart or do I have Fibromyalsia and should just shut up and listen to the dr.?
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Old 05-10-2009, 09:03 AM
 
Location: NoVa
18,435 posts, read 27,978,666 times
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Wondering what your symptoms are, Rapture.
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Old 05-10-2009, 10:55 AM
 
Location: NJ/SC
4,286 posts, read 12,946,607 times
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Quote:
Originally Posted by Pikantari View Post
Wondering what your symptoms are, Rapture.
Oh my gosh, so many things that I feel embarrassed. Here's the short version...

I've had severe back pain that started ten years ago and I had to go to emergency twice. Nothing helped, except cortisone shots in my back. It still acts up and when it does I have to lie in bed until it goes away. This was the beginning (if it's all related).

Three years ago I woke up and couldn't lift my right arm because of pain in my side and my right arm. My hand was swollen and I couldn't open it. My arm and hand were also numb. This spread to my shoulder and eventually my neck. I also had very swolled lymph notes. I was in the hospital twice, had all kinds of tests, on morphine (which did nothing) and they couldn't figure it out. Four dr's later, they "thought" I had RSD but not sure and suggested no treatment. After several weeks of this, I finially went to physical therapy. I was in a lot of pain and couldn't do anything with my right side. She said she thought it was postural because I work at a computer all day and gave me therapy until my insurance wouldn't pay anymore. I was able to lift my arm half way and open my hand but still couldn't use it as normal. About six months later I was back to normal use but still in pain but only the neck and shoulder, which to this day hasn't gone away. I also have numbness most of the time in my right hand and arm.
Other things: occasional pain in left leg, headaches, tired a lot.

About three months ago it got worse. The pain was at a 10+ and my headaches were causing me to be in bed 1 to 3 times a week. One day I woke up with a major headache that lasted three weeks and I was having sharp pain shooting through my head w/ blackouts for a few seconds. This scared me so I went to a new neurologist. After many, many tests, he said I have Fibromyalgia and gave me Lyrica. Since then the pain has not been too bad and my headaches are less.

Other symptoms;
weight gain
bruising very easily
leg cramps that cause me to jump out of bed
very tired - have to nap almost daily and I had insomnia my whole life
dizzy when I stand up sometimes
have had redness under my left eye for about a week and now today it's under my right eye

I'm 44 and feel like 100. I eat fairly healthy and get exercise, don't smoke and drink in moderation. The good news is I keep my sense of humor somehow and don't get depressed. : )

Last edited by Global Friend; 05-10-2009 at 11:06 AM..
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Old 05-10-2009, 05:46 PM
 
332 posts, read 1,265,277 times
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Your symptoms could be a result of multiple illnesses ranging from lupus to Lyme disease to a persistent viral infection. Unfortunately, the diagnosis of autoimmune conditions can take years.

My advisement is to mediate the factors you can control which is how you feel, what you eat, and how you care for your body. Start with the basics of rest, relaxation, good nutrition, and as much movement as your body allows.

The last thing you want is more medications before you have a firm diagnosis. Trust me, my mom is on 20 plus pills a day after 30 years of differing diagnoses.... and still very, very disabled most days.

Good luck. Take care of yourself as best you are able... stay well.
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Old 05-10-2009, 10:39 PM
 
Location: SC
9,035 posts, read 13,648,279 times
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Conventional Medicne has very little for Auto-Immune conditions. At best they can only help you deal with symptoms. I would look for a good naturopathically trained doctor -- an N.D. to help. They, unlike conventionally trained doctors, go to medical school to study how to detect CAUSES of disease and also study how to strenthen or fix your immune system to restore your health. They do all of this with diet and natural medicines without side effects. I just happened to have found a paper written by a Naturopath who has Lupus http://www.sunskywellness.com/pdf/treatment-lupus.pdf Having had a Naturopath for 20 years myself, it sounds like this Naturopath is still learning and could probably benefit from seeing my naturopath who has been curing "incurable" diseases for 30 years. www.holistichealthline.com You can certainly contact them. They have patients all over the world that they do phone consultations with which is what I do now that I've moved away from New England. I know they have had great success with Lupus patients.
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Old 05-11-2009, 03:48 AM
 
82 posts, read 236,756 times
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Default Hi Rapture

I have had Fibromyalgia for about 35 years. The sleep problem, weight gain, headaches, tiredness all go with Fibromyalgia. I also have a myriad of problems, Fibromyalgia is a syndrome because it is not just pain and being tired, it is a lot of things.

One morning in mid September 2008, I woke up with pain in my left arm and shoulder. I have been told that it was Frozen Shoulder by an orthopedist, arthritis of the neck and fibromyalgia by my primary. I had physical therapy and my mobility of my arm has improved but not the pain.
Please post on the forum, if you ever find out what it is and are able to get rid of pain. I have been taking pain medicine for so long and am afriad that it will stop working, also, I have been waking up with severe pain in the middle of the night since September. I did have x-rays of the shoulder and neck and there are problems with the discs in my neck and my neck has lost its natural curve. Also another dx could be impingemnt syndrome. Have you had an MRI? I want one to rule out other dxs. Will be asking for that.

I want to let you know that you are not alone. I feel for you because I am in the same boat and know your misery.

Bird Lover
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Old 05-11-2009, 06:29 AM
 
Location: NJ/SC
4,286 posts, read 12,946,607 times
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Thanks everyone. I'll check into some of the suggestions here. Bird Lover, I have had an MRI, X-Rays, Cat Scan, Blood Tests (although, not sure all what they tested for), Urine Test, EEG and Lyme Disease Test. The Dr. says he's 100% sure it's Fibromyalgia but right after I started taking Lyrica I had some new problems. One is the red under my eyes which is not a sign of Fibromyalgia but could be a sign of Lupus and every morning I wake up with horrible pain if I try to lift my arms. I can't even put my hair up in a clip to brush my teeth w/o help. Today was so bad I almost fell to the floor when the pain hit me because I tried to clip my hair. It feels like someone has a Tazer gun on me. The Lyrica has helped with my neck and shoulder pain A LOT but now I have this other thing going on.

I called the Dr. on friday and he said there is a new drug out for Fibromyalgia, so I'm going by there today to pick up a three week sample. I'll let you know what happens. I asked about the new arm pain and he said it's the Fibromyalgia and feels very strongly about it.

InformationPlease - thank you. I know what you're saying about all the drugs, I have a drawer full of them. I don't even take the pain killers because they don't work. Morphine didn't work in the hospital and at home Oxycodone, Vicodin plus probably about six others never worked once for my pain. If anything they just make me tired. The only pills I take are vitamins, Lyrica, Advil and some different pills when I get a bad headache. Thank you for the well wishes and good advice.

emilybh, thanks. I will look into what you suggested. I'm open to trying Holistic treatments. Anything to get rid of this pain!
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Old 05-11-2009, 08:01 AM
 
Location: Texas
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I have Lupus and your symptoms don't really sound a lot like Lupus, frankly. The things that make a doc suspect Lupus are rather distinctive -- such as a red rash in the shape of a butterfly on your cheeks and the bridge of your nose, weight LOSS (not gain), sensitivity to sunlight that causes a discoid rash and illness, joint pain that does not produce damage (particularly in certain joints), and some major organ issues caused by inflammation (kidneys especially, heart and CNS). Lupus is an autoimmune connective tissue disease.

There are specific blood tests they can do (a Lupus panel) but there's no one specific test or two that tells you definitively whether you have it but, according to the diagnostic criteria, the blood work does have to show certain results. If your doc hasn't ordered a Lupus panel or if the results are all negative, you most likely don't have it. Lupus isn't very common. It takes a while to diagnose through a combination of lab work and symptoms/progression.

I was first diagnosed with Rheumatoid Arthritis and treated for that. Some of the Lupus tests were coming back positive but my rheumatologist still thought (and hoped) that RA was the culprit. However, I started having kidney and heart problems and NONE of the joint deterioration that is characteristic of RA. And the RA treatment I was receiving was making me worse -- as it did, the Lupus test results worsened.

With me, different docs disagree as to whether I have Lupus AND fibromyalgia or it's all Lupus. Some say the muscle issues are separate and some say that since Lupus causes inflammation and edema in my cartilage, tendons, etc. that this is obviously going to affect the muscles, too. I tend to go along with the second theory.

The other thing you might want to have checked is your thyroid. Hypothyroidism causes weight gain and fatigue. It could be at play, along with fibromyalgia.
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Old 05-11-2009, 08:17 AM
 
Location: Texas
8,062 posts, read 15,669,631 times
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Quote:
Originally Posted by emilybh View Post
Conventional Medicne has very little for Auto-Immune conditions. At best they can only help you deal with symptoms. I would look for a good naturopathically trained doctor -- an N.D. to help. They, unlike conventionally trained doctors, go to medical school to study how to detect CAUSES of disease and also study how to strenthen or fix your immune system to restore your health. They do all of this with diet and natural medicines without side effects. I just happened to have found a paper written by a Naturopath who has Lupus http://www.sunskywellness.com/pdf/treatment-lupus.pdf Having had a Naturopath for 20 years myself, it sounds like this Naturopath is still learning and could probably benefit from seeing my naturopath who has been curing "incurable" diseases for 30 years. www.holistichealthline.com You can certainly contact them. They have patients all over the world that they do phone consultations with which is what I do now that I've moved away from New England. I know they have had great success with Lupus patients.
My rheumatologist is ALSO certified in holistic healing. He actually compounds his own vitamin and mineral supplements for his patients and uses diet and exercise to help his patients improve. He's tried me on SamE, DHEA, and a gluten-free diet.

BUT, he will be the first to tell you that holistic remedies do precious little for Systemic Lupus Erythematosus patients. Natural remedies do nothing to fix a defective gene and THAT is what causes Lupus and RA. They call Lupus "the great imitator" because it mimicks quite a few other diseases. I would suggest that anyone who's improved greatly via holistic remedies didn't really have Lupus, in the first place, or they had the skin variety and not the systemic version.

The sentence I put in bold is what concerns me. SLE patients like myself do NOT need our immune systems "strengthened." It is the OPPOSITE. Our immune systems are TOO strong and aggressive, and they cannot differentiate between what they should be attacking (like bacteria) and our organs themselves. My immune system ATTACKS my cartilage, connective tissue, and organs so I have to take strong IMMUNO-SUPPRESSANTS. I haven't had a common cold or bacterial infection for several YEARS because of my over-active immune system. That would be great if my immune system knew when to stop and didn't go after my heart and kidneys, too.

The foremost expert in Lupus is in London, at St. Thomas Hospital -- a fellow by the name of Dr. Wallace. He's written the book on Lupus and he is a medical doctor, not a holistic healer.
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Old 05-11-2009, 05:01 PM
 
Location: NJ/SC
4,286 posts, read 12,946,607 times
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Thank you teatime - I just picked up Savella, which my dr. told me to take with Lyrica for a few weeks to see if that helps. I really don't want to take more pills but may not have a choice. The reason I was thinking Lupus is because when the woman mentioned it to me I did some research and I have every symptom mnetioned on the site except the butterfly rash. Like I siad I've had a redness under my eyes that looks like a rash for over a week now. I also don't know about organ issues because I haven't had any tests for that. There are a few other symptoms I have that I didn't mention on here because I felt uncomfortable posting them but they are all symptoms of Lupus. Of course I hope I don't have it, I'm just trying to figure this all out. The other thing that you mentioned about not getting sick for years, that's me too and I thought that was strange. Every year passes by and I never get a cold, it's been probably six or seven years when everyone around me is sick. Anyway, I have an appointment for a physical in a couple weeks and I'm going to speak with my dr. about this and also Celiac Disease because when I read about that there are also similarities.

Today was one of the worse - I couldn't lift my left arm the entire day and spent most of the day with a headache in bed. I'll start the new medication tonight and keep posting in case it helps and then maybe can help someone else.
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