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.
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:
-weight loss
-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
-vomitting
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...)
-mouth soars
-fissures and fistulas
-and rashes.
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:
-genital soars
-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.
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!!!!
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.
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 hope this has helped someone.
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)