Quote:
Originally Posted by Robyn Maislin
Too soon to come to conclusions, especially big ones.
Like someone said (and I agreed) on your previous thread you (we all) will take a bit of time to adjust to Big Life Changes.
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Quote:
Originally Posted by Robyn Maislin
Too soon to come to conclusions, especially big ones.
Like someone said (and I agreed) on your previous thread you (we all) will take a bit of time to adjust to Big Life Changes.
Yup, I agree with Margo. I don't know you so can't be a good judge of anything specific, but want to remind you that your symptoms are quite real and some level of anxiety in response to real symptoms is actually kind of reasonable. Of course it'll help if you have some anxiety-management strategies, but it will also help for you to get a real diagnosis.
Not to overdo the possibility of fibromyalgia, but the Mayo Clinic link below gives a good description. Note that it is considered a centrally mediated syndrome that includes a wide range of heightened body responses like irritable bowel syndrome, irritable bladder, sleep disruption, etc. And the average time to diagnosis is five years, I saw on another website. Sheesh.
Guess I'm just trying to say...it's not your fault or your flaw that you're having real symptoms. Use the best strategies for coping with the stress that you can find, but don't fault yourself for being distressed about it.
http://www.mayoclinic.com/health/fib...079/DSECTION=2
Just chiming back in here. Things are not going that well. I rode on Friday, which was OK, and I walked yesterday, but I am having new and distressing symptoms that are specific to Lupus. On Friday I called the Rheumo. doc; they told me to come in Tuesday. I doubt the test results are back yet. My husband called his employee assistance place and made me talk to a counselor. They didn't tell me anything I didn't know, but they are setting me up to see someone. She told me I was doing a "worst case scenario," well, duh, that's how I usually deal with things and at this point, nothing is happening to prove me wrong.
This whole thing is really getting to me.
Just giving you some support here - I too am of the worst case senario school, so you have my sympathy. Every time I have a medical test I am sure I have the disease and don't stop worrying untill I have an answer. Here you are not getting any answers after so many tests - ugh.
I think you are smart to insist that the Dr. see you - sometimes they don't get how hard it is to wait for medical results -- it makes me totally crazy.
There is an excellent Mamography practice here in NYC that gives you your results right away - they don't take insurance. I can't tell you how many women I know, including me, go there and pay extra, just because we find waiting for test results barbaric.
Hang in there - talking to someone is an excellent idea to help you deal wih this too.
Aw, Robyn, I'm sorry you're having such a hard time. Maybe you should ask for something for the anxiety? Just a little something to tide you over? Anxiety is not helpful, you know?
I'm sending out good vibes to you.
Karen
Hi everyone,
So, after a mostly crappy weekend, I went back to the rheumo today. The blood work showed that I definitely do not have Lupus. OK, so why am I having all of this stuff? I must say that this doc is really good and thorough. There seems to be 2 things going on; first my MRI showed that I have 2 bulging discs (don't remember which ones) and the bone scan showed some mild degenerative arthritis, sort of normal for someone my age and activity level. Then, he asked if anyone in my family had colitis and a lightbulb went on. He said one of the autoimmune tests showed positive (barely) for some genetic marker that runs in families. In most people, usually women, it presents as colitis, but it also can show as rheumitism, and this is what I have. My aunt has really bad colitis (the one i don't get along with) and her daughter has it mildly. My mom died of some weird liver disease that was autoimmune based, so obviously I am glad my dad's genes cancelled some of the effects of this gene!
So, for now, the plan is to 1) stretch and add the pool to my health club membership becuse he wants me to either swim slow breast stroke or do deep water workouts and 2) take an Advil and a Tylenol 3-4 times a day. I go back to see him next Monday and we will re evaluate the plan. He said I can keep cycling, but try not to get hurt. Since he's a cyclist , I told him that I am a very cautious rider, but I will try to go a little more slowly until the end of the season. It's going to rain the whole rest of the week, so I won't be doing any outdoor riding until at least Saturday, but I might go to spin.
Yesterday I went to see a therapist from my husband's employee assistance program. She was really good and gave me some links to download stress reducing exercises and she showed me some other breathing things to help me calm down. I am going back to see her on Friday, just to follow up.
Thank you everyone, for being so supportive. My worst fear was that i would have something that would interfere with my riding and all of the other sports I do! I think I might have to tone down some of the level of intensity of everything at times, but so far, no one is saying stop.
OK, now I have to get ready to go celebrate my son's 25th birthday. Now that makes me feel old!
Robyn
Robyn-
Congrats on finally getting answers!! That does sound like (mostly) good news, which should be manageable for you!!
CA
Robyn, that is some great news! You can ride! And the mystery is beginning to be solved!
Breathing is good, too.
I'm still sending lots of calming and healing butterflies to you, I hope you're feeling them. :o
Hugs and happy butterflies,
~T~
That all sounds pretty manageable. Do you feel a sense of relief? I know sometimes relief can be overshadowed by 'now what?', so I hope you can take it as a challenge to find a healthy path, and not a burden.
I wish patience and grace for you while you explore and learn about your condition. I'm so happy you get to ride!
Karen
I do feel a sense of relief, although I do understand what you mean about the "now what.?" As long as it's not fatal, I can deal with it. I think the worst thing about thinking that you might have something that could compromise your quality of life or end your life too soon is feeling that you have no future to look forward to; I mean I started thinking that I might not get to see my kids get married! I realized how much I live in the future, always planning stuff to look forward to.
I just signed up to do a ride in central MA on Sunday. It's in a very hilly area, but the pace won't be fast, so it should be perfect leaf peeping weather.
This sounds good and I like the "stress-reduction" add-on. This is key I reckon in Life in General. (Not that I am a paragon but at least I *know* and these days catch myself before I do become "a danger to self or others")
Keep us informed
Well, I don't feel much better but today i have tried to follow the doctor's orders. I'm taking the Tylenol and Advil, which just masks some of the pain, really. I went to a Basic Pilates class, which was depressing to be in, with all of the "old people" and then I swam for 15 minutes. I just downloaded the stress reduction tape to my I Pod, too. Also went for an x ray of my sacroilieac.
The counselor asked me what I would do if it turned out not to be Lupus; I could see where she was going-- like what would I worry about next? She's right. I am trying not to let my mind go nuts over every little pain, but some of this still doesn't make sense to me. But, I am much calmer and I see him again on Monday. Last night we had a really good birthday dinner with my older son.
Hopefully, some of this will die down eventually.
Robyn, I think you and I are very much alike in something. Our minds and imaginations can be very powerful allies - and our very worst enemies. I can torture myself beyond belief over health issues - or other issues for that matter. I am so glad you are getting answers to your health questions, and I really support you in finding techniques and people to help you manage and lessen your anxiety. It will make your life so much easier to bear, and will have a hugely positive impact on your health. I am really glad you used the forum for help, and try other things, too. Visualization, journaling, a way to find trust in your body's abilility to heal, maybe even some herbal or homeopathic support like Rescue Remedy? all best, and hugs, Lynda Gene