Scared...

I am having a horrible week. The heat is making things so much worse. I can't stay awake or think straight anymore. I keep falling asleep at 5:30PM for some reason and waking up around midnight still feeling like I haven't slept. My ankles, toes, fingers, wrists, elbows, shoulders are KILLING ME.

I found out that my grandma was dxed with rheumatoid arthritis at 26 even though she tested negative for Rheumatoid Factor and her ESR was normal. My mother and aunt with dxed with juvenile arthritis in their teens however the doctor changed their dx to chondromalacia patella afterwards. My aunt has been on disability with VERY similar symptoms as me for many years. nausea, pain, fevers, blood pressure issues...she was also dxed with dysautonomia. No known cause.

A couple times recently I overslept and was late for work. I look like crap when I get to work. I have no energy. It even hurts my hands to type this. I'm scared. I don't know what is happening...I'm 24 years old. I've been having periods of time like this that come and go since I turned 15 or 16. I remember my knees going from skinny to really swollen looking around that time...

I don't think I can offer anything that will make you feel better and I don't know your story - but you are under the care of one or more physicians and have told them of all of your symptoms, right?

Are they running any tests on you right now? Have you had testing already done?

If you feel like you're not being taken seriously, maybe it's time to request a second opinion.

I had a severely herniated disc in my back when I was around 23 but the pain was in my leg and it was excrutiating. I was in tears from the pain multiple times a day and I slept the same hours you're describing from the pain and depression. Doctor kept giving me muscle relaxers and Vicodin insisting that because of my age, it had to be "just a pulled muscle." Second opinion doctor ordered x-rays and a scan right away and the correct problem was identified.

Good luck to you - I hope you get some answers soon.

I know how u feel, I sometimes feel as if I haven't slept at all even after a full nights sleep. I have put it down to stress and the low platelets. If your feeling worried, you should talk to your doctor or if u have already maybe seek a second opinion, the fact your stressing over it is not gonna help at all, so you should probably seek medical advise

It sounds like you need an appointment with a Rheumatologist. They should know the right tests to run.

Having symptoms like that isn't fun - been there. But you should know that if you are diagnosed with something, there are treatments available that can make you feel better. Try to get a referral to a good Rheumatologist and go from there.

RA was one of today's 'topics' on the aol homepage. There is more info there, like a new test to help with diagnosis, and treatments: www.aolhealth.com/health-concern/rheumatoid-arthritis or try Mayo Clinic's site.

Rheumatoid arthritis is a chronic (long-lasting) inflammatory disease that causes pain, stiffness, warmth, redness and swelling in joints. Over time, the affected joints may become misshapen, misaligned and damaged. Tissue lining the joint can become thick, and may wear away surrounding ligaments, cartilage and bone as it spreads. Rheumatoid arthritis usually occurs in a symmetrical pattern, meaning that if one knee or hand has it, the other usually does, too.

The cause of rheumatoid arthritis is unknown, although it appears to be an autoimmune disease. When the body's immune system does not operate as it should, white blood cells that normally attack bacteria or viruses attack healthy tissue instead — in this case, the synovium, or joint tissue. As the synovial membrane (the thin layer of cells lining the joint) becomes inflamed, enzymes are released. Over time, these enzymes and certain immune cells damage the cartilage, bone, tendons and ligaments near the joint.

Some research suggests that a virus triggers this faulty immune response. However, there is not yet convincing evidence that a single virus is the cause in all patients. At the same time, it appears that some people are more likely to get the disease because of their genetics.

Rheumatoid arthritis, the most disabling form of arthritis, generally affects more than one joint at a time. Commonly affected joints include those in the hands, wrists, feet, ankles, elbows, shoulders, hips, knees and neck. Rheumatoid arthritis can result in loose, deformed joints, loss of mobility and diminished strength. It also can cause painless lumps the size of a pea or acorn, called rheumatoid nodules. These develop under the skin, especially around the elbow or beneath the toes.

Generally, the pain of rheumatoid arthritis is described as a dull ache, similar to that of a headache or toothache. Pain is typically worse in the morning. It is not rare to have 30 minutes to an hour or more of morning stiffness. On days when the disease is more active, you may experience fatigue, loss of appetite, low-grade fever, sweats and difficulty sleeping.

Because rheumatoid arthritis is a systemic disease (meaning it can affect the entire body), you also may have inflammation in other areas, including the heart, lungs or eyes. Symptoms vary between people and even in one person over time. People with mild forms of the disease are bothered by pain and stiffness, but they may not experience any joint damage. For other people, damage occurs early, requiring aggressive medical and surgical treatment. People with rheumatoid arthritis may notice worsening and improvement for no apparent reason. Although this disease most often afflicts people between the ages of 20 and 50, it may affect children and the elderly. Of the 2 million people with rheumatoid arthritis in the United States, at least 75 percent are women.


I really hope you don't have this already. It seems many of the autoimmune diseases are difficult to diagnose. My Mom's MS diagnosis took years! Ann, Caitlin's (23) Mom

Hey there everyone. Thanks for the responses. It's mostly my wrists, fingers, and knees but my toes have been hurting a little too. Yesterday it hurt to hold my phone in my hand for more than a few minutes. It gets better and then worse but the knee problems started when I was about 16. I've been walking with a limp since then and that's when the exhaustion started. It's definitely a deep aching sensation but also trembling. I've dropped cups on the floor because my hands go weak.

The oddest part are the fevers I get. One time it soared to almost 104 for no reason. I took Advil and it just vanished and never came back. It seems the hotter and more humid it gets the worse this gets. It's 86 degress in my apartment right now because we aren't allowed AC. Fans do nothing at all.

I saw the rheumatologist. She did a body exam and although it was painful she said my joints dont appear to be swollen said since my blood tests were normal for the most part she thinks its fibronylagia and not RA or Lupus. She doesnt want to do any testing. She gave me a Rx for cymbalta and that was that. I don't want to take it honestly.

I told my grandma who has RA and she said to just wait and see how my aunts testing comes back next month because we have very similar problems.

Sorry - but I find that totally unacceptable. I had the exact same thing happen to me with the first Rheumatologist that I saw. He did a physical and told me I had no joint swelling, so I must be fine. He dismissed me without further testing.

I knew something was wrong, so I talked to my Hematologist. He referred me to another Rheumatologist who monitored me and helped with symptoms. About two years later, I met the criteria for Lupus. By that time, I had very painful joints..hips, elbows and shoulders. I could barely bend my arms, but never any swelling.

In my opinion, that is not a good Rheumotologist that you saw. A patient with ITP and physical complaints should be lab tested and monitored. Don't give up.

I tried Cymbalta once. What dose did she give you?

30mg. What should I tell her? Should I call my PCP?

I told her my grandmas tests were normal and she had RA. She didn't know what to think of that and she told me she doesn't know how to explain my fevers...Does fibromyalgia cause flu-like symptoms that come in waves? Including fevers? I told her my wrists, fingers, toes, ankles hurt...she said "Well it sounds very wide spread". She told me to grab her hand and I couldn't do it hard. She said "That's it?". I told her it was painful to squeeze anymore. I told her I have weakness in my hands a lot and it's just shocking to me that she didn't want to do any bloodwork at all. Nothing. Especially since I'm one of the only ones in my family who isn't hypothyroid and everyone in my family seems to have joint problems and have since their late teens/early 20s. I asked her about thryoid antibodies since my TSH, T3, and T4 were okay. She said it wasn't necessary to test for them if the TSH is okay. Whatever...I'm so tired of missing work to hear things like this. I missed 2 hours of work driving to see her. I told her I have ITP and she said "Oh okay" as if it meant something but am I correct when I say that fibro and ITP are not linked? Fibro isn't even an autoimmune disease right? I told her I've been diagnosed with Aspergers, ITP, Dysautonomia...the list goes on. Fibromyalgia does not explain any of those...but she seemed content with her dx...

She probably thinks I'm a nutcase.

You're not a nut case. You had a doctor who doesn't truly understand autoimmune disorders. Many times, symptoms occur before labs can confirm anything. I'm not saying you do have or will ever have Lupus or RA or MCTD, etc., but I am saying that you have several symptoms that should not be blown off.

My story: I was diagnosed with ITP in 1998. I felt fine other than the fatigue that came with ITP and of course, the bruises and such. I continued to feel fine until I had a bad reaction to a drug in 2004. At that time, I began to have weird symptoms and and believe the reaction I had triggered Lupus which I had obviously been predisposed to. The first weird thing was that I began to feel flu-like for a few days once or twice a month. It went on and on for months. I also started to feel extreme fatigue and horrible brain fog, then started having muscle pain and stiffness. After about a year, I went to see the Rheumatologist that blew me off. I told him I had ITP; that's an important fact because it can be one of the Lupus criteria. As I said, he blew me off.

When I spoke to my Hematologist, he did an ANA which came back 1:320 - moderately elevated. He sent me to the second Rheumatologist who did more testing. I had some labs come back which are indicative of Lupus, but still not enough to meet the criteria. Slowly though, I saw labs beginning to change and was eventually diagnosed.

After a lot of reading and research, I've realized that some autoimmune disorders develop very slowly and symptoms can come first. Any doctor who tells you that you are fine and does not recognize that fact is not the best Rheumatologist. I've read some real horror stories about people who were diagnosed only after serious kidney damage has been done. That shouldn't happen.

I don't know about fibromyalgia - I'm on the fence about that. I have those same symptoms, but I feel that it is due to Lupus myalgia (muscle inflammation). Fibro can be a diagnosis that is given when a doctor is unsure about what is happening. It's a catch-all diagnosis and may not be accurate.

I don't know how you'll do with 30 mg's of Cymbalta. I took 60 one day and was nearly comatose; completely unable to function. I never took it again.

My advice: seek a second opinion. At least get someone to run the right labs and monitor you at least twice a year for a few years. I'm on my fourth Rheumatologist. My second and favorite one moved away. I fired my third for being very insensitive. So far, I like my fourth because she listens and agrees with me about most things. Don't give up.

My family is so tired of hearing me see doctors. Maybe I'll secretly get the second opinon. To her credit my pcp had already done my RF which was neg, ANA which was neg, and ESR which was 3. Those are the tests they did.

She said that my symptoms qualified as fibromyalgia AMONG other things and that my tests were fine except for a couple tests...So vague?? I dont get it.

I faxed a letter to the rheumatologist saying I will take cymbalta after she actually rules out RA and Lupus and she agreed to do all the antibody tests. I had told her I get rashes in the sun on my chest and my arms and my neck and I get fevers joint pain flu like symptoms abdominal pain, blood and bilirubin in my urine but no UTI, lymph nodes swelling all the time I told her about the ITP...and she came up with fibro..but the pamphlet doesnt seem to match my symptoms. I don't know about her...but I'm giving her a second chance to prove her case.