Health Issues that su** (long)

[Crankin]

OK, I have resisted writing about this here, because generally, I don't like to share this stuff on line. But, I have been having issues all summer and now it is October. It started with what I thought was a sinus infection, got treated and then my stomach was acting up. Started getting tingling in my feet and my bp was up. After several unfruitful visits to my primary care dr. where I saw the PA, I went to a neurologist. I had the full work up, the exam, tons of blood work, an MRI of the head and neck and an EMG. Everything was negative. At first everyone thought I had MS, but that didn't show up. Over the years I have had many weird medical things, all of which seem to come and go. I also had a time in my twenties when i had panic attacks and generally, i do not react well to thoughts that there might be something wrong with me. Since I started cycling (7 years) I have noticed that sometimes, in the beginning of a ride, I get a weird burning feeling from my left groin, up my back and I just don't feel that great. It usually goes away after I have warmed up. This started getting really bad, too. And, my whole adult life I have had weird muscle pains and aches on my left side, around the shoulder, neck, arm on that side too. It usually gets noticeable when i am sick. So after I came back from my trip to the Berkshires, where I did some very challenging riding, this all got worse. I have weird pains in my head, almost headache like, but not a headache. I have pain in my teeth, my left foot, buttock, and my calf. At times I feel like I am sick with a sinus infection, but now I don't have that. I also have a ringing in my left ear that comes and goes, but is very annoying. So in the course of trying to figure this out, I went to an ENT, who discovered I had 2 nodules on my thyroid. I got an ultra sound, which confirmed them. So now I go to an endocrinologist on the 18th. My thyroid levels are normal, but I am extremely freaked out. The endo will determine if I need an ultra sound biopsy. From what i read and what the ENT told me, only 5% of these nodules are cancer. OK, now the other part is that my primary care doc also sent me to a rheumotologist. I am being evaluated for Lupus, which might explain some of the weird things I've had over the years, but the Lupus tests the neuro gave me were negative. I also had a bone scan and an MRI of the lumbar region. I know the bone scan was fine. BTW, both the ENT and the rheumo. are cyclists and are very understanding. At this point, I can barely eat and my bp is up. My husbnd is ready to pack me in; I am very emotional and I can't stop thinking of all of the bad possibilities. Oh yes, when I was in the ER last week, they saw a "spot" on my ovary, so I had an ultra sound. That turned out to be nothing worrisome.
Retirement isn't supposed to be like this. I have not ridden very much lately. Sunday we did lead a ride, which had a lot of climbing, but we were going slowly, so it didn't aggravate anything, but I still had a lot of the symptoms. I guess I am just looking for support; the 2 above doctors told me to keep riding, that it will help, but I am so upset and feeling bad that I am scared to go out alone most of the time.
Any thoughts?

[DeniseGoldberg]

Robyn -
Wow, that really sucks. Hopefully the docs will be able to figure out what's going on soon.

In the meantime, and for whatever it's worth, I'm sending good healing (and mystery solving) wishes to you.

--- Denise

[spokewench]

Fibromyalgia - is what is coming to my mind, the phantom pains, etc. I know a couple of ladies that have this; it is a hard diagnosis and something you want to be careful with being diagnosed with since it can ruin your ability to get healthcare paid for. Of course, I'm not doctor or anything of the sort, but some of your symptoms sound familiar to how some of these ladies described their problems.

Anyone else on TE have fibromyalgia that might be able to help with websites or something?

[DebW]

Geez, not the retirement you had planned on. :( Sorry to hear about all the physical issues. Hope you get answers soon. Meanwhile, if you ever need a riding partner, or just a good listener, call me.

[indigoiis]

Have you been tested for Lyme Disease?

[ehirsch83]

Robyn,
I am so sorry you are having to go through all of this!
If you want anyone to talk to or ask questions to about the thyroid issue, feel free to PM me. I had thyroid cancer a couple years ago and had a complete thyroidectamy. So feel free to ask any questions about biopsy or anything else.

I hope they figure out what is causing everything else! and hopefully those nodules are just that, nodules.

[LBTC]

Robyn, that's a lot to deal with, and I'm sorry you waited so long to share it! This forum is the best place for support like this - I've been benefiting from it for over a year now!

I want you to know, as much as it feels like it, you are not alone! There are lots of us who have mysterious symptoms that defy diganosis. You can make it through this!

For me, the doctors were unable to help. They felt they had a diagnosis of Crohn's disease, but decided I was not sick enough (!) to put me on the terribly toxic drugs they use to control the disease. I'm very glad about this now, as I am much healthier now, and definitely on the road to wellness.

Besides the fabulous support I found here, and with my family and friends, there are three things that have helped me a lot: 3 fabulous alternative health care practitioners: acupuncture, integrated massage therapy (cranio-sacral, etc), and Bioenergetics testing; being kinder to myself by resting when I need to and continuing to do gentle exercise (yoga stretching every morning) as I can manage it; and a restrictive diet (primarily just gluten-free and dairy-free, but also really restricted on sugars and anything packaged).

I really think acupuncture would be a great place for you to try next. I've been constantly surprised at which meridians are where and how they are connected. Perhaps there is an imbalance along a meridian that goes along teeth, buttocks, calf and foot. Of course, it doesn't hurt (it's usually only uncomfortable) to go through the standard medical tests, especially if you can rule out some scary things, and you can take that info to whichever health care people you see will see.

If you want more info, PM me.

In the meantime, you are surrounded by gentle fluttering butterflies, you can feel the whisper of their wings at your temples, on your nose, along your fingers and all of you. Their shimmering blues relax and calm you, their gentle greens bring healing to your whole being, their bright yellows bring you sudden joy. Allow these butterflies to help pull you from your scared thoughts and into a gentler happier place. They are always there, but you'll feel better when you notice them!

Hugs,
~T~

[Crankin]

Thanks, everyone. Yes, I was tested for Lyme disease and I don't have it. It seemed a logical thing, since I spend a good part of the year walking in the woods. Right now I am mostly freaked out about the thyroid thing because although this is almost always benign, I have a couple of signs it might not be. Right now, i am envisioning the worst. Emily, I will PM you. My primary care doc is a big believer in massage, so she has mentioned that, too. I am going to try and go to the health club and do yoga, since I just unfroze my membership from the summer. If I can keep my stomach healthy and eat, that will help me the most until I get some handle on what is actually wrong with me. And, we had to cancel our long awaited vacation, which is really upsetting me.
Thanks, everyone for the quick replies.

[mimitabby]

did you get my email Robyn?

[Tuckervill]

Robyn, I'm just glad you shared with us. Things like this are easier when you don't go it alone. The wealth of information here should be helpful.

I'm sending out the positive healing vibes. Try to do other things besides worry. Worry is counterproductive.

Karen

[KnottedYet]

I am thinking good thoughts for you.

I'm also thinking that a lot of your symptoms sound a lot like many of mine. Is it possible you have celiac disease? (the best test seems to be going without wheat/oats/barley/rye and monitoring symptom response) Celiacs can get crazy gut and neuro symptoms that don't make sense. Because celiacs don't absorb nutrients right they can have nutrient related problems. Vitamin B12 is a huge problem for celiacs, we don't absorb it well. Lack of B12 can really mess with your neuro system, too. (beyond what the disease does directly)

Celiac is an autoimmune disease that gets worse with stress, you can go years without problems, it comes and goes, and you can have sensitivities to dairy and a few other foods. (I have to watch dairy and alcohol and sometimes soy, they can cause me trouble!)

Just re-read your post, and it is striking how similar our symptoms are.

(I also got to do the "is it MS? is it Lupus? is it Thyroid?" dance.)

[Crankin]

Mimi, I did just read your email. Thanks. I will look at that information when I know more about the thyroid situation. That is real.
Knotted, I have thought about Celiac. I am going to the GI doc on Friday. And this does seem to get worse with alchohol and right now the thought of anything whole wheat makes me ill. I am an autoimmune nightmare; all kinds of these diseases run in my family. I have a colonoscopy sceduled for 11/7 and that is freaking me out, too.
Oy.

[ginny]

Um... have you been tested for Lyme disease? You live on the Eastern Seaboard. There are instances (not all that rare) of lyme arthritis and even neuro borreliosis (Borrelia burgdorferi is the bacteria that causes lyme disease). I'm not a physician, but I am a research scientist, and I can tell you what you probably already know, it sounds like there's a problem with your nerves. That's why they looked at MS. There are a number of things that can cause problems with the demylenation of nerves - MS is one of those things. Some are autoimmune, some are caused by disease causing organisms (a very rare viruse HTLV-1 can cause symptoms nearly indistinguishable from MS), and they are nearly always very tough to track down. Good luck! Keep after it. Do your own research and suggest things to your doctors. You know yourself better than doctors, and they sometimes tend to blow people off... if you are sick, you know it better than anyone. I'm sorry you are going through this.

[latelatebloomer]

just a couple thoughts....

I tested negative for Lyme disease but had it anyway, my doctor said that false negatives were not unusual, and since I spend a lot of time in deer territory, I did the antibiotic treatment, and the neuro symptoms disappeared.

I agree with LBTC that you might want to look into acupuncture. If you could find the right practitioner for you, they can do a whole lot to de-stress your system, calm your mind, get you back into a balance that will allow your body to heal itself. It almost always knows how, you know? - if we can get out of the way and give it a chance. My husband and I both had serious problems for which "standard medicine" was useless. We worked with a chiropractor who specializes in using nutrition to help people with serious diseases and an acupuncturist who worked on us weekly for awhile. It was expensive, but we are both REALLY well now, way beyond what we thought possible for ourselves. So don't despair and don't give up.

sending healing thoughts your way. sharing was the right thing to do! ;)

[silver]

I'm so sorry that you are going through this. Please share here whenever you need to.

My MIL has celiac. There is a blood test they can do to confirm but I think that you need to be eating gluten for the results to be useful. She nearly died before they figured out what it was. First GI doctor totally missed it. Put her through all kinds of tests. Would have been so much easier if he had just tested for this first.

I have the benign thyroid nodule. Went through the tests after being told that it could be cancer. The primary doctor sent me for the ultrasound and then the radioactive thing (not a medical term :rolleyes: ) The endo did a needle biopsy in her office and confirmed that it was benign. She said that I hadn't needed the other tests.

[Crankin]

I really don't think I have Lyme Disease. I've had some of these weird things for over 20 years; I lived in AZ when it started.
I am not adverse to alternative medicine, but in this case, that will not help if I have thyroid cancer. I have tried chiro and found it to be most unsuccessful. I would rather investigate PT or accupuncture if I go that route.
Silver, they would not put me through the "radioative" thing first, I would have the needle biopsy. I already had the regular ultra sound, which confirmed what the dr. felt. I am nervous because one of the nodules is solid and I think it is causing the pain in my ear (not common but can happen).

[emily_in_nc]

Robyn,

I have nothing new or useful to add, just wanted to lend my support and caring. The community here is wonderfully supportive, so I am really glad that you divulged your situation. Please do keep us updated, and know that we're all pulling for your improved health and for a benign diagnosis.

Warm thoughts,
Emily

[Triskeliongirl]

I know you are freaked out at the possiblity of thyroid cancer, but benign thyroid nodules are relatively common, and you know that the probablity is that yours are indeed benign. So operate on that assumption until proven otherwise. I know its easier to say than do, but I think the best thing is to not worry about it until your doc tells you there is something to worry about. That is why we get screened. Without screens, lots of nasty stuff goes undetected, but when screens turn up stuff that could be scary, we need to hang tough until the real test results are in. Thanks for sharing, and warm wishes go out your way to hope you and your docs get to the bottom on your problems.

[salsabike]

Fibromyalgia - is what is coming to my mind, the phantom pains, etc. I know a couple of ladies that have this; it is a hard diagnosis and something you want to be careful with being diagnosed with since it can ruin your ability to get healthcare paid for. Of course, I'm not doctor or anything of the sort, but some of your symptoms sound familiar to how some of these ladies described their problems.

Anyone else on TE have fibromyalgia that might be able to help with websites or something?

EXACTLY what I was thinking, and it's because it sounds so completely like what I went through years ago before my fibromyalgia was diagnosed. In the process of many scary years, I thought I had MS. I've been tested for lupus three times (don't have it). I've had tingling and odd muscle twitches and headaches. I had these symptoms and others (visual symptoms, for example) for many years before I got diagnosed. Thyroid nodules are really common and usually aren't cancerous.

My advice is: find a well-trained, young rheumatologist and ask about whether this could be fibromyalgia. I have never had any trouble getting health care coverage, by the way.

PM me if you want. I can't tell you how familiar this all sounds, although I realize that doesn't automatically mean it's the same thing. I am doing very well, by the way, so please know that you will not always be this scared. And feel free to ask my spouse sometime how insanely anxious I got the first time I was tested for lupus.

[Crankin]

Again, thank you, everyone, for the incredible support. I had a really bad night. I can't fall asleep and then when I do, it's for about 2 hours. Then I wake up and the whole cycle starts again. I managed to sleep until 7:15, so I probably got 5 hours? My husband is working from home most of the next 2 weeks, since this is when we were supposed to be away. He doesn't know what to do with me. We are both very pragmatic people, but in this case, I seem to have lost all perspective. Anyway, after an hour of crying, I called the endocrinologist back and told the receptionist what was going on. They are seeing me tomorrow (I think when I said i can't eat, sleep, and my blood pressure is up helped). At least the whole process will go forward sooner.
Intellectually I know most of these things are benign, but my neck is hurting and the ringing in my ear is making me believe it is connected to the thyroid thing. I keep assuming all of my other pains are a big scary cancer all running together. I know it's stupid and not likely, but the thoughts are there.
In answer to the other points, I know about fibromalaygia (sp?) and will definitely bring it up with the rheumo. He is fairly young (40s), Harvard trained and practices in Boston one day a week, so he is hooked into all of the medical research community here. He listened well. I have excellent medical insurance, don't need referrals, so there's no problem there.
My husband got the name of a therapist for me, but I really don't want to start there. My other concern is that Steve will be going away Oct. 27-Nov. 3 to Japan and Korea and I am freaked out about being alone with this issue. All of my friends work, except for one who is really crazy and over reacts to everything. She doesn't know about this.
I will keep you posted.

[Triskeliongirl]

Hi Robyn. So sorry you are going through this. Hopefully getting in sooner rather than later with the endo. will help. I agree, I think having the facts now is all that can stop your imagination from going wild. Do you have any family members that could come and stay with you while Steve is away? While sometimes its hard to ask for help, sometimes that is the best thing to do. -eileen

[Crankin]

Well, not really. I mean my son lives and works in the city, and does stay here once in awhile, but it would be a hellish commute for him. He is coming over tonight and I will ask him. My other son is in the military. My only other relative here is my aunt who I am not on good terms with. She is a negative super conservative, hateful person who never got over the fact that her husband died when she was 50. She focuses on health problems and would try to take over, as she did when my mom was sick.My cousins (her children) are useless. One is a gun toting Jewish redneck and the other is Orthodox and won't even come into my house. My female cousin is OK, but she's young and not particularly effective with things. My dad and brother live in San Diego. I have lived most of my adult life with friends as my family.
Well, I am getting off the computer for awhile!

[margo49]

Nothing hellovan intelligent to offer but thoughts.

And to suggest that you try not to worry yourself into a tail-spin. Easy to say but you have a brilliant mind that I reckon you could get it to convince your brain's "worrying" circuits that it's in everybody's best interests that they should stay quiet for a while!
You have family, friends, TE and a string of good doctors. If there is something to find it will be found. In the meantime several terrible things have been crossed of the "possibles" list.
And remember : at any given moment chances are that nothing terrible is actually happening to you. So if you live in the moment and say this to yourself (the above) when you start to "think thoughts" you can calm yourself remarkably effectively.
I also recommend nice music (like those Nature Sounds ones) and nice pleasant art or pictures.

btw, I love your description of your extended family!

[Tuckervill]

Ditto what Margo said. What you need is distraction. Do something to change your state of mind, and what's best is usually something physical. Can you take a walk or get you and dh in the car and go out somewhere that you won't have to interact with a lot of people? (Or maybe where you DO.)

Maybe there's a nice calm place you can walk around with your husband--a botanic garden or something? That way you can still sort your thoughts, but have more opportunity to focus on something else? Even if you don't feel like it, give it a try, knowing ahead of time that you can leave if you really can't handle it.

I often use this idea with my children, kind of a 3-way communication. They tell me more about their thoughts and feelings when we're doing something else that doesn't require too much attention, like a hike down a nature trail. I suppose there's something mind clearing about it.

How about some stream-of-consciousness journaling? Pour it all out on the page.

Do something else to make the time pass, because that's the goal--allowing the time to pass. Don't think too much about when your husband will be away--it's still a ways off and this can all be over by then.

Still vibing,
Karen

[Crankin]

I did go out with hubby today. We are building a patio and finishing backyard landscaping, so we went to buy some things related to that. Then we went out to lunch. I was afraid I wouldn't be able to eat, but I did. I have been trying to exercise, still, but last week was a wash; all I did was the ride on Sunday, which was really good. Yesterday i walked the 2.5 mile loop of my street, which is a climb. I may go walking today, still, but maybe on a trail. I feel better when I am out there (mentally), but it doesn't do much once I get back.
Margo, my family is weird. Since my mom died, I realy don't have much to do with them. And, when we got home from lunch, I had a message from my aunt. I told her I hadn't called her back because I didn't like the hateful political message she left on my voice mail when she was wishing me Shana Tova a couple of weeks ago (a real contradiction, wouldn't you say?). I gave her a brief run down of what was going on and then said i would call her when i had more info.

[Zen]

Robyn, I have a thyroid ultrasound scheduled for next Wednesday. For some reason i just don't worry about things. That's my personality. If it's ok, then good for me. if not, I'll do what I gotta do.

People deal with things in their own way but try to relax somehow. all that stress and worry only raises your cortisol (and other hormone) levels.

[Velobambina]

Robyn --- Nothing helpful to add in terms of advice. I will, however, say a couple prayers for you and will send lots of good thoughts your way. Try to think positive and realize that you have a lot of folks who care about you.

FWIW, I understand about the family. Same thing happened when my dad died in '05 (my mom's been gone since '01). Although I have three siblings, I'm in very limited contact w/only my younger brother. The other two, forget it. It's sad, but for me, it's for the best.

[Zen]

Although I have three siblings, I'm in very limited contact w/only my younger brother. The other two, forget it. It's sad, but for me, it's for the best.

There are more than a few of us here who are "orphans".

[Crankin]

OK, I just got back from the endo, a very nice woman. I made Steve come with me, for an extra pair of ears. Basically, after reading the report and examining me, she told me the following: 1) 50% of women over 50 have nodules on their thyroid 2) if the nodules are less than 2 cm they are too small to biopsy as they would not be able to get enough tissue (both of mine are smaller). So the plan is to have another ultra sound in 6 months to see if they have changed and if not, then have one once a year.

She did listen to my whole medical saga and I got a stern "you are extremely anxious" and that i should consider meds. I told her that was out of the question that I ride to reduce my stress, so she said to consider yoga. I did a lot of yoga for cyclists at home last winter and spring, which I really liked, but when I went to a class at the health club, I hated it. I am not much for "spiritual" stuff, chanting, etc. I mean i'm not too spiritual even when i go to synagogue. But, I will try again since it is boring to do it alone most of the time, even though I have 3 different dvds.

So, tomorrow I go to the GI doc. I have a few concerns there, will bring up the celieac (sp.) thing and discuss my reduced appetite (which is improving), the fact that I am still losing weight, and some pain in my buttock area (a pain in the a$$?).I am sure I will be hyper focusing on that for the next 24 hours! I already have a colonoscopy scheduled for Nov. After tomorrow, I only have to go back to get all of my results from the rheumo. on the 15th.
Thanks again, everyone for your support. I have come to the conclusion that maybe I shouldn't have stopped working. But, so far I haven't felt good enough to go out and ride the way i had planned to.
We might actually go away for 3 days next week, to make up a little for our cancelled vacation.

[sundial]

Robyn, I hope you can find a relaxing, tranquil and peaceful vacation. I am sorry you are having to battle so much. I am keeping you close in my thoughts and prayers.

[margo49]

I have come to the conclusion that maybe I shouldn't have stopped working.


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.

[salsabike]

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/fibromyalgia/DS00079/DSECTION=2

[Crankin]

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.

[Bklynmom]

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.

[Tuckervill]

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

[Crankin]

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

[Blueberry]

Robyn-

Congrats on finally getting answers!! That does sound like (mostly) good news, which should be manageable for you!!

CA

[LBTC]

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~

[Tuckervill]

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

[Crankin]

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.

[margo49]

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

[Crankin]

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.

[latelatebloomer]

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