HELLO!! and welcome.
I didn't go for quite 20 years, but at about 13 or so I was diagnosed boarder-line lupus and was treated as if I had lupus. It turns out I didn't and have always had pain and other symptoms. Anyway, long story short, I was diagnosed with Fibro in August of 2008. It is definitely relieving in a sense to know at least what you have. I think that is half the battle. We can have a plan of action now, because we know what we are dealing with. I love your positive attitude. It will do more than drugs will ever be able. Oh, real quick, I wanted to also say that I have thinning hair. I havent lost it all, but I can tell that the fibro/drugs haven't done good for it.
As far as the pain in the bones, I actaully had it pretty bad in my right leg last night. I am not sure why and the only way to describe it to my husband was like ants crawling on the inside of my leg, like up and down the bone. it was a numbing feeling from inside out. I do also get random "stabbing like or arthridic" pains in my joints a lot. I honestly think this is just part of fibro.
You mentioned other tests...if you want any feedback or are nervous, there are plenty of us that have problem gone through it and we'll be able to calm the nerves. The people around here are great and supportive.
Welcome! Happy Friday!
I was recently diagnosed with Fibro, so I don't have a great deal of experience with this lovely disease. But I was diagnosed with Crohn's almost two years ago now, and I too lost a lot of hair. My doctor at the time said that it was my body's reaction to everything it had been through. After some research I learned that some of my meds interfered with the absorption of Folic Acid, and that can make your hair fall out. I started on a suppliment, pushed my doctors into prescribing stronger meds to get the Crohn's under control, and my hair stopped falling out. Over a year later, and a lot of my hair has grown back, but it's grown back curly! I haven't had curls since I was a baby. A lot of it also grew back gray. Apparently, it's not unusual for hair that fell out due to poor health or medication to grow back a different texture or color. Highlights cover the gray, and with a good hair cut it looks better, and is easier to style, than ever. My best hair loss advice to you is try not to worry (it may seem like it at times, but it probably won't all fall out) and do a little research on your meds. See if there are any nutrients they might be blocking and then check with your doctor about suppliments. It's funny how in the whole scheme of things, the hair is probably the least important problem we have, but it can be the most distressing!
I also know what you mean about the importance of finding good docs and the relief of finally getting a diagnosis. For the last six months my medical team kept telling me that my extreme fatigue, aches, and joint pain were all caused by the Crohn's. They acknowledged that my current meds weren't taking care of those symptoms, and that there were other treatment options available, including increasing the dosage on my current meds. But they "weren't prepared" to make those changes. Well, I wasn't "prepared" to continue feeling this way, and paying them for the privilege. So I found a new medical team, was immediately diagnosed with Fibro, and started a treatment plan that actually makes a difference. In the last two years I've been through two PCPs, two surgeons, three GIs and two Rheumys. I feel pretty good about my current docs, but I'm getting less and less patient with people who mess around and drag their feet about getting me the help I need. Yes, I know that it takes time to figure out if a treatment is working or not, but in the mean time I'm the one suffering.
I have: Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ
Meds: Ibuprofen 600mg every 4-6 hours, Cyclobenzaprine 10 mg, Simvastatin 20mg, Citaloram 20mg Melatonin 5mg Sublingual, B12 sublingual, B Complex, Folic Acid, Omega 3
Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren
As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11
Hi there Amber,
Welcome!!! You mentioned hair loss and my eyes (ears) perked up. I was thinking of running a thread on that today! I can't go anywhere in my house w/o finding my hair all over the place. I'd blame hubby for it but that guy's hair just keep getting thicker, so its me!! Fortunatly I don't have any bald spots (yet).
This is an awesome group of friends.. we think of eachother as family. I've learned so much since I've been hanging around. Everyone truly cares about us.
I'm always amazed how long many of us go without a dx. I have been battling this syndrome most of my adult life, but didn't get a dx till just a few weeks ago, though I've been basically treated for it years.. I didn't have the official dx till then. I'm on new meds now and they really are helping. I'm not nor ever have been on oxy. Hope I never need it.
Anyway, welcome!! And warm hugs!!