I am a 28 year old female and have been having a range of symptoms for years. Symptoms: Fatigue, joint pain throughout body (hand might be repetitive stress injury), muscle pain, headaches, weakness, diarrhea (sometimes constipation), abdominal pain: lower, middle, upper but varies (had gallbladder out last year, originally thought it was pain from incisions), edema (leg), lack of concentration, bad memory, brain fog (more difficulty thinking), tingling/numbness in hands and feet (varies, several times per day),weight gain (50 lbs since college, overweight to begin with), obesity (especially abdominal, but also in arms/legs), buffalo hump (?), sinus problems, burning in throat (acid reflux?), stabbing pain in chest/back, entire neck filling swollen/stiff, swollen lymph nodes in neck, dry skin, teeth grinding (worn away molars even with mouth guard), anxiety, irritability (used to be even tempered), depression (?), stressed, always warm, red face, sweating a lot, visible blue veins (always had because of pale skin, but worse now, I look like a medical vein chart), muscle twitching, muscle cramping, shortness of breath after 0.5 mile walk uphill to car or up stairs (I do this every day), racing heart (very infrequent), very irregular periods before being put on birth control pill 10 years ago, some hair on face, hoarseness (was really bad last year and has improved), dark circles under eyes (puffiness too?), dizziness (occasional), tinnitus, occasional blocked ears (hearing goes out), poor balance, floating spots on eyes, had recurrent mononucleosis last year.
I had blood tests recently and everything was normal except my Alkaline Phosphatase was slightly high (124 U/L), triglycerides high, and cholesterol borderline high (maybe didn’t fast long enough). TSH was normal (2.66 mIU/L) but did not measure T4 or T3 or thyroid peroxidase (only thing abnormal when my husband was diagnosed with Hashimoto’s Thyroiditis). The doctor did not measure any other hormones. Kidney and liver enzymes normal, blood counts normal, carbon dioxide normal (22 mmol/L), calcium normal (9.6 mg/dL), glucose normal (87).
My guesses would be Cushing’s Syndrome (high cortisol), hypothyroidism, gallstone blocking bile duct (would think it would be sooner after surgery), Lyme disease, fibromyalgia. Tests for Lupus (ANA), arthritis (rheumatoid factor), and anemia (iron and hemocrit) were negative/normal.
I would prefer not to get a fibromyalgia diagnosis (a non-diagnosis), because the only treatment seems to be anti-depressants. I went through this with the gallbladder. I had intense abdominal pain and diarrhea for 3 years and the doctors said it was IBS and even suggested anti-depressants. Only when it collapsed and I couldn’t function anymore did they consider testing for anything else.
To further explain:
Right now I have fatigue and joint and muscle pain (for years, getting worse), especially in my hand (may be repetitive stress injury and/or carpal tunnel) but all over general stiffness. The top of my hips in my back is very tender and sensitive to any touch, always stiff shoulders and neck, also stiff knees and feet/ankles. Often have headaches (probably tension or sinus), my lymph nodes in neck are swollen, and today my entire neck feels swollen and I had burning in the front of my throat. Sometimes my chest/ upper back feels like someone is stabbing me in the middle or slightly to right side of chest/back (sometimes my breasts are sore). Recently I have pain in my back near the kidneys. I have edema (swelling) in my left foot/lower leg (it tends to swell with standing after what was likely a spider bite at age 11, but it is not going down completely recently, even with compression/elevation) and I feel swollen overall but cannot see it. I take Excedrin (helps the fatigue some) and ibuprofen, which help the pain but it never completely goes away. I also take oral contraceptives, claritan D, flonase and a multi-vitamin.
I had a sore throat 3 weeks ago, improved with 5 days antibiotic, 2 days later I had a sinus infection (I am prone to them) and was put on 10 days antibiotics which seemed to cure the sinus infection (still have some headaches). I swear my "kidney" pain seemed to go away with the antibiotics. 1 year ago I had recurrent Mononucleosis (EBV) after taking antibiotics for 1 month to get rid of a sore throat and sinus infection. About 9 months ago I had laproscopic surgery to remove a collapsed gallbladder. Before this, I had intermittent (became constant) moderate to severe abdominal pain for 3 years and diarrhea (sometimes constipation right before). This was diagnosed as irritable bowel syndrome (IBS), despite having stabbing, burning, aching pain (like something in me was dying) and usually not cramping except with period. Maybe the collapsed gallbladder weakened my immune system and caused the mono to come back? It got to the point where I could barely walk around and barely ate anything. Even still, I did not loose weight until several weeks after surgery (bloating?), but I have since gained it backed because my diet is not as limited. I thought my abdominal pain would go away after I healed from surgery, but I still have twinges and stabbing/ aching pains in upper abdomen (on right, middle and left), and middle and lower abdomen on right side.
I really feel for you. You have so much going on. I do think it sounds like more than one thing happening. Here are a few thoughts and suggestions:
1) Investigate lyme disease. Take a look at the lyme disease forum here. It is often missed.
2) Fibromyalgia is different for each person and every person reacts differently to medications. I have Lupus and fibromyalgia and am actually doing pretty well. I have found the right mix of supplements (fish oil, C0Q10, D3, Selenium, magnesium, calcium, D-Ribose) for me and am taking Remeron for depression (once the depression was under control I could manage much better) and Lyrica which I started at a very low dose and increased gradually as needed. Unless you have very prominent tender points don't let anyone diagnose you with it until they have ruled out other things. Be aware that fibromyalgia often happens in conjunction with other auto-immune diseases.
3) Keep going back for more testing. Lupus and RA can take a while before they show up positively in your blood. Ensure you are being seen by a Rheumatologist. They are the best at diagnosing and treating.
4) More investigation into your thyroid is needed. I would suggest you might want to look into getting the book "The Hormone Diet". I am just reading this and am amazed at how the symptoms, the lists of tests to have and how certain drugs and supplements plus diet and exercise can help many different kinds of issues.
5) You should look into whether you might have an ovarian cyst and/or PCOS. When I had my ovarian cysts my whole body went wonky.
6) Some of your abdominal pain may be from adhesions. A massage therapist skilled in myofascial release can help or else ball rolling can help to release them. If you go to the ovarian cyst forum and then to the health pages attached to it there is a posting on dealing with adhesions and ball rolling.
Thanks for your help. I have noticed that massages from my husband help (as long as he doesn't rub my hip bone!), although usually by the next day or two it hurts again. And I just get frustrated with the doctors because they can be rather dismissive (even if they act nice) and will only run a few tests when it wouldn't be that difficult to look at everything. Or they act like it's all in my head. So I stop even mentioning the minor to moderate symptoms that are annoying by themselves but really add up to severely hurt my quality of life.
Then my husband goes in to the doctor for the first time in years with a few vague complaints (none very serious, he only went because I pushed him). He gets referred to an endocrinologist and they run tons of tests (especially for all the hormones). So he gets at least some answer immediately (auto-immune thyroid disease) and they want to run more tests to look at other hormone deficiencies. On the other hand, I suppose he looked like a textbook case of Cushing's disease, although the tests were negative for excess cortisol (they said maybe it's cyclical Cushing's?). Sorry to ramble. I just wish I had his doctors instead of the ones I'm stuck with under my insurance.
you sound a lot like me. finally i went gluten and soy free. Even though my tests for celiac disease were negative, my gastroenterologist finally diagnosed me with celiac based on the vast improvement I made on a gluten and soy free diet. He does not put much faith in the celiac blood test and says that they are not a very accurate diagnostic tool. Most doctors don't realize how severe celiac disease can be when undiagnosed for a long time. I know from experience that it can cause many of the symptoms you listed. It takes adherence to a strict diet, but the improvements do come. After 28 years of undiagnosed celiac and strange progressive symptoms and illnesses, I'm still recovering. But I've been gluten and soy free for 1 year and 2 months and feeling better every day. It can't hurt for you to try (and it's free with no negative side effects!).
As an obese person I know in my heart that most of my health problems stem from my weight. I suffer from incredible joint paint (also have degenerative disc disease and a bone spur on my spine), headaches, diarrhea, constipation, cramping, chronic yeast infections, edema (most likely from too much salt in all the processed foods I eat). I know it's so very frustrating when you go to the doctor and they dismiss you because you're overweight, but they do it for a reason. Get the weight off, get into shape and then address whatever ailments you have left over. It's your only hope.
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