I have had severe pain in my hand/feet joints, knees, base of neck. Swelling in my hands/feet, a rash on my calves and forearms (like dermatitis, yet no change in soap/detergents, etc.), temperature ranging from 97.6-100.9 daily for many months now, daily nausea and diarreah, increased migraine activity and mental fogginess and eye problems (loss of focus/dry)as well as unprovoked anxiety. Have had blood tests and all come back within normal parameters. Symptoms are getting worse over time. I am miserable and can't live life like this. I am a teacher and highly depended upon. Stress is a major factor in my life. Job quality is being lost due to these problems. What tests should I be asking for? What diseases can I suggest? I used to live up north (Cape Cod, MA) and now live in South (FL). I have been told I have FM, but these latest symptoms (pain especially) are totally different and excrutiating. Can anyone help me?
To my understanding, fibromyalgia does not affect the joints. Also, the swelling and fever you have, I don't believe could be related to the fibro. It sounds like you could have lupus or now have CFS (chronic fatigue syndrome), along with fibro. Rashes can appear with fibro, but not CFS. Also, dermatitis is common in patients who have lupus. Sometimes people diagnosed with fibro will get CFS and CFS patients' get fibro sympdromes. I do know that 65% of people diagnosed with CFS have joint pain and 85% of people with CFS have a fever or sensation of a fever.
I would schedule an appointment with your physician ASAP and ask him to rule out lupus and other autoimmune conditions. He should order a bunch of labwork, including an ANA test. It sounds like they probably did this in the first place, but now you have more symptoms).
To check a list of symptoms for CFS, go to google.com and type in "CFS symptoms" + "Dr. David Bell". For a list of lupus symptoms, visit the Lupus Foundation of America website.
Please let your physician know how these symptoms are affecting your daily life and especially with work. If worse comes to worse, they can put you on short term disability or the FMLA (Family Medical Leave Act).
I can relate to how you believe because I have CFS and have so many symptoms. Your story sounds all too familiar. I'm currently on the Marshall Protocol as a treatment and possible cure for my condition. It is fairly new and still listed as a research protocol, but has helped numerous people with CFS, lyme disease and other inflammatory diseases.
I don't know how long ago your physician did labwork on you, but if it was before the joint pain, he/she should run another lupus panel on you, as well as other labs to rule out Sjogrens & another RF. Also, many times a test for lyme disease will be a false negative, so many physicians have to repeat the test again if their patient still has symptoms. That is very important.
Here are the usual labs to R/O lupus:
Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood
Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions
Complement proteins C3 and C4 test to examine specific levels
There is a new lab test to diagnose CFS, but it hasn't been approved yet by the FDA. The website address is http://www.redlabsusa.com
Thank you so much for the input... It helps to have some suggestions. I did go to the Doctor, and he just looked at me. I could see an appologetic look in his eye, like, "Gee, I really would like to help you, but I haven't got a clue". I asked for any test for anything he thinks it might be, and mentioned Lyme disease as well. I had a rheumatoid factor, lyme titre, ESR, and a comprehensive pannel drawn. I don't care how painful the test, I just want someone to say: "It's this"... and help me ease the symptoms. I am slowly loosing my life to this "whatever it is". I appreciate your thoughts and quick response!
I agree with the previous post that you should be tested for Lupus, and other autoimmune problems. Fibro does not affect the joints, but I had a Dr. suggest it to me too about 5 years ago. I turned out to have an autoimmune disorder classified as Mixed Connective Tissue Disease. It has characteristics of Lupus ad Scleroderma. Ther are medications that will help you feel better, and slow the disease progression if you do fall into an autoimmune category. Whatever you do, don't let them tell you it's Fibro, because the rash and joint pain just don't fit.
Had all the blood tests... came back normal. Pain and fever and rash went away... for a while. Pain just returned today. I'm so miserable. I don't know what to do. They keep saying I'm normal... this can't be normal! What should I demand to have tested? Anything but blood tests that can be done?
When I read your symtoms, I thought to myself, "I don't remember writing this? When did I write this?" I actually thought it had been written by ME! My doctor also shrugs his shoulders and all my tests come back normal. I have "spells" where I can hardly leave my bed, and then I have great days where nothing at all is wrong, although those seem more infrequent. I am 50 years old and I don't know what's going on. I certainly don't remember being bitten by a tick. Have you gotten any closer to finding answers to your problems?
i said the same thing as mrswilliams. i live on the treasure coast of florida and am an elementary school teacher. we just got through a MRSA scare at our school, where the custodians were supposed to come and clean the classrooms and desks thoroughly, but they didn't. the risk manager said it's virtually impossible for a teacher to get MRSA from a kid (two of mine were diagnosed iwth it). Of course, this is the same guy who said there was no mold in my classroom after the hurricanes in 2004, but OMG, after they did the remediation (improperly) they discovered green and black mold everywhere. but, they said, this is florida. anyway, i am so sick this week, sicker than usual, and it's the same stuff that everyone else is talking about, except last year a dermatologist i went to see snorted that what i had was nothing more than folliculitis. but my whole body is covered with cystic pimply things that start out as hard bumps, but end up festering and i feel the illness pervading my body as the bumps on my body change. i cannot stand it anymore. all i do is cry and sleep when i am not teaching. so tomorrow i am going to the urgent care clinic because i can barely hold my head up.
thanks for letting me vent.
I don't know why doctors treat us all like we are stupid. I also felt like I was reading a message written by me (except for the rash and skin problems). I have been in two separate car accidents in which someone who was not paying attention plowed into the back of my car, ultimately damaging my back. The first one was four years ago, the second was just last year on Dec. 17th. Since then, I have seen more doctors than I care to and been told that I JUST have a herniated disk that is probably pinching a nerve. I deal with excruciating pain every second of my life and sometimes it even wakes me up. Now I battle with depression and anxiety because of this and just recently, new issues have developed. A large knot has appeared on the side of my wrist and the doctor THINKS it may be a cyst, but claims that it is strange because it is on the bone, so I am waiting (two weeks now) for a referral to a bone specialist so that I can have that checked out/removed. Also, now my hands, wrists, and knuckles hurt and burn, along with my knees, and ankles. This, along with my already existing pain in my lower back, hips, upper back, right shoulder, and neck, is driving me crazy. I feel that something else may be going on, but I keep getting "this is all related to your chronic pain problem." I am not a hypochondriac, but sometimes I feel that the doctors look at me like I am. I have much better things I could do with my time and money than spend it on doctors' appointments and medication. I am also a teacher, also in Florida (weird isn't it?), and I have to force myself on everyday, despite the excruciating pain I deal with. I hate that others are feeling the way I do, but I am relieved to hear that I am not crazy and others feel this way too.
I felt the same way as one of the other readers that I dont remember writing this I suffer the exact EXACT same things INCLUDING the skin I have been seen by doctor after doctor and I too was told folliculitis and I was told at one point scabies.... none of the meds work.... I could go on and on and on with what I have been thru trying to find an answer .... my temp has been 99.9 for so long now they think that is my normal temp.... but it wasn't until I got sick.... YEARS ago.... like 10 years ago.... now even more strange things are happening like my bones are breaking ...my wrist was just diagnosed with Kienbock.... although I never have injuried it and I dont fit any of the other reasons.... my heel hurts so bad now I can hardly get out of bed... these last things the wrist and heel just started over the last few months.... my blood test are starting to come back strange too high RA factor... but RA test comes back normal.... another test comes back possible Gout but further testing shows nothing.... I am now gaining weight... like 75 pounds in a few months.... crazy... crazy.... I have given up on finding an answer and just try and get through my days.... I don't see any doctors now unless of course as resently I had to go because I can no longer bend my wrist! Maybe 39 year old people just feel this way.... hum...
For months I have pain in joints especially wrists, hands and, ankles. I also feel sick feverish, my hands turn blue and fingernail purple in the cold,and I was dizzy for 4 days. I have allergic reactions from changing soap. I just hurt everywhere! I got a lot of blood tests that all come out negative. I see a rhuematologist in April. What could this be? I also suffer from abdominal and intestinal adhesions, asthma, allergies and intersititial cystitis. It seems like I always have something wrong with me.
SIck fors months rash, fever weak,starts out with sore throat and stiff neck all blood test back negative for Lupus and RA IT was STILL"S diasease Check it out found it by accident going crazy on the internet knowing I had something bad. Yes and bad bad joint pain
go to www.stillsdisease.org I saw the picture of the girl with the rash on her chest and it looked just like me. The story sounded like me it might be?.
ITs not in your head. MY Remotholigist said I tiped him off I told him about this and he said yes he agreed this was it and I was the only other case he has seen in his 12 years of pracice.I brought in pictures of my rash after a shower and fever and told him about the sore throat and stiff neck and i did havea higher set rate. Steroids are the only nasty med that helps but boy they make you moody and chubby but it so helps with pain and heart rate slows down and fevers
.only about 1in 100,000 get this auto disease
Hope I Heped some one out there lost like me im not better but now I adlease know what I am up against.
Well I am another woman of 50 who could have written many of these post I have read here. I had symptoms like you and was told it "could"be fibro, CFS, Lupus, etc. I kept getting sicker. Finally I ended up in the hospital after going to the doctor several times to only be told it was in my head, part of menopause, etc. Well come to find out I had a rare heart disease called Prinzmetal. It is SO unknown, unstudied and passed over, especially in women our age. My husband had some heart symptoms and he was IMMEDIATELY taken seriously and sent to the hospital for testing. He is the same age as me!
As far as the rash which has been on my ankles for quite some time, I happen to be watching a show on tv where they were cleaning out a couples house and found black mold in the basement. Two of the team got this terrible rash on their ankles and it spread and they had to have a special team come in who was in special gear. I have found black mold in my basement after it flooded.
Not sure what else to say except don't let doctors tell you that it is all in your head, tell them that you have written a will and stated in there each time you have gone to see him and made your family aware of your symptoms and lack of help, just in case you should die, you want your family to sue the doctor. lol
Just checking here did the doc do thyroid tests? and did you check these not just acept that the doc said ok?? I ask becos there are new limits for "normal" thyroid levels tsh should be under 3 not 5 now. A lot of your symptoms could be due to hypothyroid- check it out. By way the thyroid forum here is excellent and has helped me no end.
Love Manxie ( Ali xx)
I had all the same symptoms. My neck hurt, wrists,ankles,knees and even my spine. My hands and feet were swollen. I thought I had the flu until I woke up with a sunburn all over.Then I felt as if someone poisoned me. So I got a blood test and was positive for lyme. I never saw a tick,felt a tick or had a bullseye rash. They say the people who have lyme never did see a tick or a rash. The nymph tick is a size of a pin head . They can be beige to transparent. IT is very SCARY. Get another blood test for lyme. Even if it comes back neg do it again in 4 months. Good luck !!
I also was diagnosed with Lyme, much to my doctors surprise. I did have a tick bite. I got a sunburn rash, fever, severe headaches, migraines....the whole 9 yards. I really have felt like at times I could die. I have had Lyme for a year now. I have recurring episodes of illness, but the headache never leaves. I am on amitriptline to help the severity of the headaches. I get about 6-8 migraines monthly. I live in Arkansas, and doctors here will not generally acknowledge Lyme as being here. What treatment did your dr. give you? I have had 2-20 days of doxycline. It helps, but doesnt cure. I would like to know more about treatment in our area.
Oh my! I have the exact symptoms! I can't get anyone to take me serious! I've had tons of infections in a short period of time, I've had migraine type headaches, ended up in the ER on several occassions. The last time I ended up in the ER I swore I was never going back. I waited 5 hours to be seen only to be told there's nothing wrong with me! The pain is especially bad in the early dawn/morning hours. I dread night time because I know that's when the pain gets worse. I've had thyroid tests, lupus, lyme, etc. I've had so many blood tests I have tracks on my arms!!!!!!
I'm so desperate for help! I have a bumpy rash across my mid back and a straight line red rash on my left leg. The pain is on the right side of my back, I've been told I have dextroscoliosis, but no one will offer any help for it! I have an appt with a rheumatologist in July, but I need help now. It's amazing how a doctor expects to get paid huge bucks but will send you home with no solution!!!!
This sounds like a possible autoimmune disease. Two spring to mind and both are difficult to diagnose: Crohn's disease and Behcet's syndrome.
I have been diagnosed with Crohn's but Behcet's seems like it fits more closely the symptoms.
Crohn's is always found in the digestive system but is not limited to that area of the body. The most common symptoms are:
-diarrhea (with or without blood, often occuring at night and 2 to 5 times or more per day)
-low grade fever (also frequently at night)
-abdominal pain and cramping
However, Crohn's can also cause:
-swelling in the tissue of the eye (uveitis)
-swelling and pain in joints (often combined with RA but you may also have spondyloarthropathy which would result in negative RA and still be associated with Crohn's. RA generally appears in hands and feet first, spondyloarthropathy symptoms often occur in the neck (cervical area) as well as hands and feet, knees, etc...)
-fissures and fistulas
Crohn's tends to flare up alternating with remission but sometimes the symptoms persist continually. If symptoms progress, they tend to continue to progress and you'll need treatment. It can be quite serious.
Like most autoimmune disorders, steroids help because they help reduce swelling caused by your body defending itself from itself.
If steroids do not sufficiently rein in the disease, TNF inhibitors can do the trick but generally aren't very fun and can be expensive - but less so than results of untreated Crohn's.
Another possibility is Behcet's.
It is another autoimmune disease which is rarer than Crohn's and is found more in the Middle East than elsewhere but still seen in the US.
-Behcet's most common symptom is reoccuring mouth soars (they are identical to canker soars)
other common symptoms:
-skin lesions and/or rash
-uveitis (swelling in eye)
-ulcerations in GI tract (looks like Crohn's early stages) causing diahrrea, bleeding, and pain
-low grade fever
-arthritis - NOT RA though, no permanent damage and short duration
-aneurysms in lungs
-AND, meningosephalytis - swelling of the covering of the brain and spine which affects mood and behavior, coordination, fever, stiff neck, dimentia, and headache.
Both diseases are treated similarly. Behcet's sounds quite a bit more serious - it is inflammation of the blood vessels primarily. Crohn's does NOT cause brain problems.
Both of these diseases are diagnosed differentially - in other words, by eliminating other possible diagnoses. For instance, the absence of RA factor in your blood test immediately eliminates Rheumatoid Arthritis. There are a couple of genetic blood tests that can help narrow the liklihood of Crohn's but not definitively diagnose it. Same with Behcet's.
Endoscopy and colonoscopy are used to look for lesions and collect biopsy samples. Biopsies of legions are used to eliminate cancer causes and to look for granulomatous inflammation specifically but still does not definitively identify Crohn's.
Behcet's probably was never even considered for you and if you're still around and suffering, I suggest you mention it.
Reading all these comments, gives me the feeling I am the right place.
For 2 years now I have been fighting pain with no real answer from my doctors. I have had all test and guesses I can handle as many of you have said. While helping my daughter through what I thought was a cold I became ill with a red rash over my body and was very tired. It took 3 weeks from the time the symptoms started to find out why from a dermatologist and my doctor that I had had scarlet fever. From that time until now I have dealt with pain in my joints, my hands and feet. I keep going to the doctors for help knowing it is not in my head, they can not give me a strong direction I fight everyday to keep moving but my feet are so sore and hard to walk on. I am on my 3 pair of foot inserts to help the problem and have done physio as well as message but still no relief. I search the web with hope that someone can help and could direct me to a doctor that deals with these kinds of problems. This is the closest I have found to at least people talking about this.
Thanks for helping me to feel I am not alone.
It may be hard to digest, but your symptoms sound simular to sickle cell anemia. Try ruling this out. People of all races can be affected. Although mostly people of African an Asian decent are affected by it.
Just ran across this post...hoping, since its been a couple years since you wrote, that your Doctors figured out what was wrong. A few years ago, went through something eerily similar:
- rash on legs/arms
- major swelling of the legs, ankles& feet (followed by the chunks of peeling skin when the swelling goes down)
- pain in basically every joint
GP couldn't figure it out, after to trips to the ER, referred to Rheumatologist, many tests--- nothing ---- referred to Hepatologist. Seems one test showed elevated liver levels. The Hepatologist ended up being the godsend! He ran the full gamut of blood tests.
Results: An acute case of Hepatitis B. A shocker...apparently a little known fact... it is highly contagious & in about 30+% of the cases the transmission source is unknown. (sidenote: there is a vaccine for Hepatitis A & B & I can't help but wonder why they promote it more activively!)
Thankfully, most people can overcome it & develop anti-bodies. Whew! Lucked out & cleared the virus from my system, but not after almost a 6-8 months of agony.
Apparently, not ALL people have the traditional symptoms of jaundice when the liver is screaming out in pain...it may present symptoms that it make it very difficult to pinpoint.
Although the same symptoms fit perfectly with many, if not all of the other health issues mentioned here. Felt I should share in case it helps just one other person that is still searching & tested negative on everything else.
I am an elementary teacher and recently have become quite ill. Initially I thought I might be coming down with the flu. Pain started in my feet and then the next day, all of my joints were aching and painful. Feet are now swollen and it is extremely painful to walk. Worse in the morning when I am trying to get out of bed. I have red bumps all over my legs and have had recurring headaches. No nausea, but my doctor confirmed that it is NOT the flu. Had a series of blood tests done and most came back negative so there is no infection. I am currently awaiting results for FIFTHS Disease.
Have any of you ever thought that it might be FIFTHS DISEASE...It is ia mild illness that occurs most commonly in children. It is caused by parvovirus B19. About 50 percent of adults have already had fifth disease as children or adolescents, and therefore are immune to the parvovirus. If an adult is not immune, he or she can become infected with fifth disease.
Unlike a child's fifth disease symptoms, adults can develop joint pain or swelling, or both. Usually, joints on both sides of the body are affected. The joints most frequently affected are the hands, wrists, and knees. The joint pain and swelling usually goes away in a week or two, but can last for several months.
Adults can also get a rash with fifth disease, but it is most often absent or does not have the "slapped cheek" look that is seen in children.
Google it- - there is tons of information on Adults who get FIFTHS DISEASE.
Don't give up on finding a solution to your issues. I was diagnosed with Fibromyalgia over 15 years ago. I was recently diagnosed with Scleroderma and have experienced most of what most of you have experienced. joint pains, rashes, especially feet hurting hard to walk on, depression, mental fogginess, sensitivity to cold, hurting so bad until on a scale of 10 I was 100. It took years to get to this diagnosis. I also deal with CREST Syndrome and Sjrogren's. I do know that stress plays a major factor in all of this and will send me into a crisis. Change doctors if you must and don't take anyone making you feeling like you are a hypochondriac.
You may be having an allergic reaction to something. This can cause inflammation in the joints, rashes, swelling of the hands and feet, nausea, headaches, anxiety, dry/itchy eyes, and skin thats warm to the touch. I suggest seeing an allergy specialist to explore options for what may be causing this.
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