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Posted 10/25/2013 6:36 PM (GMT 0)
Hello everyone.

I have been a member of healing well for several months I think, but not very active. I was searching for answers about MS because initially the doctors thought I had MS but all of the test results were pretty much okay.

I was recently referred to a rheumatologist. Whenever a doctor asks if it hurts to touch certain points in my body, I've said no - but this doctor knew all the right spots to push - and it HURT! I kept saying "ouch" and every time I said that he'd respond with "you have fibro".

As I've been doing some online research about it I can't believe how many of the symptoms I have - it feels very validating to me but at the same time unsettling. Does this condition typically get worse over time? I'm 47 years old, but I've had so many of the symptoms for just about as long as I can remember - just took a long time to get diagnosed. I've learned to just live with the symptoms - some days it's easier and some days its harder, but sometimes it seems like it is getting worse. I also have a lot of intestinal problems, so I attributed my overall not feeling well to that - now I've learned intestinal problems are yet another symptom of fibro.
Posted 10/25/2013 7:24 PM (GMT 0)
Hi, Grandma Kay, and welcome! Yes, fibro shares many of the same symptoms as MS, lupus, Lyme disease and other things. It's taken many of us a long time for a correct diagnosis. At least you don't have to keep searching now.

Fibromyalgia is not an inflammatory illness and it isn't progressive. We will have days better than other days and we do have flares but the good news it the flares do go away and fibro does no damage to our bodies....like arthritis can. A few years ago I was getting progressively worse back pain. At first I blamed it on fibro but then knew fibro isn't progressive so I went to a rheumatologist. It turned out to be another problem...along with fibro. I was given proper treatment and am doing good now.

IBS happens to some people with fibro but not all. Be checked out, though, if you haven't already. I don't have IBS but I do have Crohn's disease and some have ulcerative colitis, celiac, and some have no intestinal problems. It's good to know what you are dealing with in this area, too.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links would be Symptoms and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibro 101 is very informative so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 10/25/2013 7:56 PM (GMT 0)
Welcome to the fibro family, GrandmaKay!!!

Yep, fibro is one of things that share a lot of symptoms with lots of other conditions. So many of us have fibro with other things that getting a diagnosis can take some time.

This time of year is hard on fibromites...the weather changes can bring on flares, so you can feel more symptomatic than usual. Taking one day at a time and keeping a positive attitude really helps.

I'm glad you have joined us...the gang here is friendly and caring.

Hugs, Robin
Posted 10/26/2013 1:39 AM (GMT 0)
Thank you for the warm welcome! I'm glad to know that this is not a progressive disease - thank you Sherrine for that clarification. I have tested negative for celiac, but am definitely sensitive to gluten so I have eliminated that from my diet. I have severe diverticular disease throughout my entire colon and they are suspicious that there might be some colitis as well just because of my symptoms and a recent CT scan showed some inflammation, but it wasn't clear if that was from another diverticulitis flare up or what - they just treated me with antibiotics. They are recommending surgery, but I have been resistant to that.

Yesterday I felt like I couldn't get warm no matter what I did. I sat in a chair with a wool sweater on, a fleece blanket, fuzzy gloves and a heating pad most of the day just to keep from shivering - but I didn't have a fever. Today I have been better, but just feeling kind of "flu-ish".

I can't wash vegetables because my hands can't handle the cold water - its very painful. I don't know if that's a typical fibro symptom or not, but it seems like it could be based on what I've read about cold or heat sensitivity. I think I have both, but mostly cold. I'm not looking forward to winter!

Anyway, thanks again for the welcome. I look forward to getting to know everyone here.
Posted 10/26/2013 1:51 AM (GMT 0)
Keep a food journal and this will help you know if any other foods are affecting you. I'm sure they told you foods to avoid with diverticulosis. Fibro isn't an inflammatory illness so this is caused by something different. We do have great forums on HealingWell where you can get info on digestive problems. That could help you too.

We have several members with Sjogren's Syndrome. They have very cold hands, dry eyes, etc. you might look into that. We have a Sjogren's forum on HealingWell also.

You could wash your veggies with warm water. That sure wouldn't hurt them. After all, they grew in the sun. smilewinkgrin

Sherrine
Posted 10/26/2013 2:06 AM (GMT 0)
If your hands turn pale, blue or blotchy red it could be Raynauds syndrome. My mother has it and I'm waiting to see if my rheumy agrees that I have it too.
Posted 10/26/2013 3:32 AM (GMT 0)
Thank you again! The rheumatologist that I saw mentioned the possibility of Sjogren's Syndrome and said the only way to know if I had it was to do a lip biopsy. He also said that there was no treatment for it, so the only reason I would have it done was just so I would know if I had it or not. I declined.

Joy, my my hands do get very red but I think it's from very dry skin that happens with the cold weather. That is also painful, but it only happens in the winter time.

I will do some research into both of these though. Thanks!
Posted 10/26/2013 7:28 AM (GMT 0)
Welcome grandmakay- you found a great place to learn how to manage your fibro. I am like you I can wear layers of clothes and still be cold. Have you asked your rheumatologist about raynauds? Since you mention about your hands hurting under cold water or temperatures. Several of us fibromites have it. Not really much you can do to help it either, except prevention.

I know for myself I have improved since I started this forum. It has taken time to perfect a treatment for me. I still have pain, but better manage now. I don't work, so I can rest when I need to. Not working has made a big difference in my health. I hope can learn as much as I have. I hope to see you around.
Posted 10/26/2013 11:35 AM (GMT 0)
Kay, I think most of us have sensitive skin. I even have to cut tags out of clothing and I wear the softest of materials. My hands are sensitive, too. Right now I have mild chemical burns from using bleach with Spic and Span to wipe down patio furniture. Dummy me didn't put on rubber gloves. But I do use Curel hand lotion and that soothes them and heals the skin. See if that helps. I use Curel several times a day.

Sherrine
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