bebe127

Yes, and I agree with all the above. For the last two days, my chest has been more painful than usual (I have this daily) and my left arm hurts as well, kinda a muscle ache, tingly, numbing feeling, hard to explain. Sometimes it goes up my neck (carotid area) and sometimes wraps around under my arm and into my back. One EP I had actually told me this has nothing to do with my heart or POTS. I've gotten remarks ranging from, "You're too young to have heart problems" to "Maybe it's the underwire in your bra" to "Maybe you pulled a muscle."

Responses in my head when I heard the above remarks, "You're an idiot!", "It might be the underwire, however the only time I wear a bra is when I leave the house, which is like, never." , and "It might be a pulled muscle if I exercised or if there is any way, shape or form the possibility of pulling a muscle whilst laying in bed or on the couch."

No one has seemed to be able to figure it out. The last heart testing I had done was at the initial onset of my symptoms over 4 years ago. All testing said my heart was fine, even on my treadmill stress test, the results showed that I have above average exercise capacity. Go figure. I think it's about time I go in again (to a new EP) and ask for full heart testing, just to see where I'm at now.

I do know it is a scary feeling. Like most posters ^^ I wouldn't know if I was really in danger or not at this point. I would encourage you though to seek professional help if this is something new and concerning.

Feel better,

Bebe

Hanice,

So sorry to hear that no real answers were revealed, but still glad in a way, if that makes any sense. Navigating this illness is like navigating a mine field. I've had trouble finding dr.s in my area as well, but do have a few names. We live in the same area and you can pm me if you'd like the names and numbers. I haven't had a chance to see any of these dr.s, they were suggested by either my insurance or a friend who has a daughter with dys. Since now I'm dealing with my hubby's troubles and my daughter's to boot (still need to contact her cardio), my situation has been put on the back burner for now.

PM me if you want to chat.

Keep on keeping on

Bebe

I wake with this sensation in the mornings at times. It has never happened at any other time, it actually feels as though it wakes me in the mornings. At first, it scared me pretty bad, I didn't know what was going on. I would check my vitals and they would be fine, I would take my pulse and it was fine. Never have figured out what it is. Now, I'm fairly used to it and just ignore it most days (not that I condone ignoring things, if you are concerned, you should of course discuss it with your dr.).

Alex,

I was actually taught this by a therapist as a relaxation method. I must admit that it did help with relaxation, and I use it from time to time, but as inconsistency is the only thing I'm consistent with, I haven't made this a habit. She also taught me a breathing method where you place your middle finger on your forehead and breath in for 5 seconds through your nose, then touch your chin and exhale for 5 seconds, continue doing this until you relax. I'm pretty sure that's what you do as this was a few years ago and it's hard for me to remember. In the book, The Phobia and Anxiety Workbook by Bourne, there are lots of breathing/relaxation techniques.

Update on the hubs,

He's going on 6 weeks now with little to no change and some days it gets worse. He missed a total of two weeks from work, totally unheard of for my husband. I don't even think he's missed a total of 10 days in the 20+ years he's worked for this company. This is the first week he has been back to work. This am he told me that the pressure was at its worst, he feels like his head is a barometer. The weather has been really stormy and yucky the last few weeks here. I feel so bad for him. It's not like with me where I can go lay down and get some type of respite from feeling crappy, there doesn't seem like there is anything that he can do to get relief.

He went to the dr. (ENT) who gave him a bunch of testing. Every thing checked out fine. His hearing is great, doesn't have ringing in ears, signals are getting to the brain via the vestibular nerve, etc. He told my husband that he still thinks it's viral and that it just has to run its course. Could take days, weeks, or months. He doesn't want to prescribe anything because he said it's important that my husband's brain learn to compensate on its own. That, I agree with. My husband isn't really having trouble with dizziness anyway, and he doesn't want to take pills just to take them. The dr. did suggest that my husband try Benadryl, but we couldn't find any that is non drowsy and he can't be on that and go to work at the same time. My husband has tried taking my son's allergy meds for a few days, but he says he doesn't really see a difference. Maybe he should try OTC sinus medication? At the last visit to the ENT, the dr. told him he'd see him back in six weeks and if things haven't improved, he'll send him for a different MRI. I surely hope for my husband's sake that this thing will dwindle and go away quickly for him.

Hanice,

I was thinking about this last night after reading the other posts and yours as well. I might've misinterpreted the question. I hide most of my issues from friends and family just because of the reasons I stated above as well as just not having the energy to go into detail with anyone. When it comes to my husband, now that I think of it, I do hide things from him too. I don't do it intentionally, I don't think. I've been going through this for so long, it seems, that I just ignore a lot of stuff until it gets unbearable, then I tell him. I too don't want to over burden my husband with every little ache and pain I have. He is pretty intuitive though, and he knows when things are getting bad for me. At the beginning stages of this, I was calling him home practically daily with anxiety because my body was going haywire and I just needed him by my side. Now, like I said, I'm just kinda used to certain things, so I don't even bother to bring them up.

I'm with Underwater, forums like this have been invaluable to me as I don't know anyone near me with any type of chronic illness, my friends are busy living their lives and I don't have family that lives close. It can be quite lonely at times, but I'm grateful to have this site, so I know I'm not alone.

Keep on keeping on

Be well,

Bebe

Can and do all the time. I wear more masks than all the Broadway shows put together . I get the "but you don't look sick" all the time, even from my doctor. She just told me during a recent visit when I was asking about an ANA test for autoimmune disorders, "I can just look at you and tell that you don't have autoimmune issues." True story!! I don't get out much these days, only when necessary and if I happen to see someone I know while out, it's like they think I'm cured or something. No one except my husband and kids truly know how I struggle daily. My husband knows all and can definitely tell when I'm having a really bad day; I can't hide much from him. I guess too, I hide the way I feel from others because I don't want to be looked at as someone with an illness (even though that's what I am), and I don't want sympathy (even though a little bit of sympathy might be nice now that I think of it). Maybe I'm trying to will myself to get better, or maybe I just don't like to show weakness. Who knows?

IMHO, I think everyone deals with chronic illness differently. I think it's important though to let your husband know how you are feeling, because it is hard enough to go through this ordeal, and one shouldn't have to go it alone.

Be well,

Bebe

Hey Hanice,

Welcome to the site! Hate that you have to be here, but glad you found us!! This site has been a Godsend to me over the last few years. The people are great, so supportive and knowledgeable. I do hope you begin to feel better now that you've been dx. I love the idea of "What makes you feel better". Here are mine:

1. My husband, I refer to him as my Big Handsome. He's my American Express Card; I never leave home without him

2. Trying to stay busy around the house, I don't drive much. I homeschool my two teens and teach in co-ops which keeps me fairly busy.

3. Laying down. I've mastered the art of doing much from bed.

4. Listening to Pandora. I have stations ranging from Christian music to Scottish bagpipes, to Indian music, to Tibetan Monks, to P!nk, well, you get the idea, it's a pretty eclectic list

5. Watching Netflix

6. Laying by the pool with Big Handsome and kids when I feel up to it.

7. Drawing, I'm into freehand drawing whimsical trees with Bible verses at the moment.

8. Scrapbooking

9. Pinteresting with my daughter

10. Blogging

Be well,

Bebe

Thanks Wendy!!

I wake every morning with orange urine. In the am I drink 2 cups of coffee, and a fruit/veg shake, then about 32+oz of water/propel. My urine during this time is usually yellow and cloudy. I urinate throughout the day, never really calculated, but I would guess that I go about once or twice an hour. Later in the afternoon, I have a beer or two (I'm totally not condoning alcohol) and my urine is almost clear. The only time of day it is clear. I only mention this because I find it odd that alcohol is supposed to dehydrate, yet after I drink a couple of beers, it's perfectly light to clear and I don't urinate as much (I don't think). Then later in the evening, I drink about 64+ oz. of water between late afternoon and bedtime again urinating about once or twice an hour. I don't drink tea or soda.

Ashley,

How horrific! I am so terribly sorry for your loss and pray that you and your family will have a peace that passes all understanding.

Blessings,

Bebe

Soooo, I’m going to try to make this short, ha, ha, ha, as if…

I’d like for someone to help me try to understand what’s going on. I have a question about muscle soreness. I have read a bunch about Fibro/CFS, but still don’t know if that’s what I have or not. Here’s my story…

I get soooo sore from the littlest things it seems. The other day, the left side of my neck was sore to the touch. Of course, my mind jumps directly to my carotid artery as I’m touching/slightly pressing on area of soreness. Then, I realized that the day before I was looking to the right for a bit, kinda straining and then it hit me, I was sore from looking to the right. Now, it’s three days later and the area is still sore to the touch and when I move my head to the right.

Yesterday, I was in the pool and had my hands gripping the coping and my feet up on the wall, just hanging out, not straining or doing anything, just trying to enjoy the sun and the cool water. Today, I wake up and my shoulders are so sore as well as the insides of my thighs.

I do get arthritis type pain in my joints from past injuries, but don’t have any swelling that I can notice. I just don’t understand why I can do the slightest thing and the next morning I wake up and literally have to hobble to the restroom like I’m 80. I just don’t get it.

I must tell you that I can be rather lazy; however before getting sick 4+ years ago, I was quite active. It can’t possibly because I’m out of shape or can it? I’m only 43, 5’9”, and weigh 145lbs. and I still have muscle tone. I guess I just can’t imagine a normal person (not that I'm "normal" by any stretch of the imagination) getting so sore after doing so little.

So, my question is to those that have Fibro/CFS. Could I have this? I’ve read the Mayo articles on it, but I just don’t know. What type of pain do you experience? Is it all the time? Does it wax and wane? The pain I feel is not excruciating, it’s tolerable, just annoying and nonstop. I can’t even clean the tub without feeling the effects for days. It just makes me feel like I don’t want to do anything physical for fear of being sore for days after.

Any insight would be appreciated. Feel free to even tell me that I’m a baby and to buck up, maybe that’s what I need to do anyway!

Much appreciated,

Bebe

Wonderful news!! So great to hear that you are doing well. Can't wait to hear more about your experience

Keep it up!!

Bebe

Freaked,

I am so sorry you are going through this. I too have been where you are. It is so hard not to dwell on every thing our body is doing and/or not doing, whatever the case may be. Prior to being dx I never gave my heart, vitals etc. a second thought. I'm in my 4th year with this and things have gotten somewhat better for me. I am on meds. although they do as they are intended, I still feel poorly most days. I don't understand and the dr.s don't understand, and what's worse, they don't try to for the most part. They take my original dx. of "probably POTS" and go with that. I've had no other testing done and my recent visit to the GP was a bust. I know how frustrating it can be.

Things do get better though. I'm not sure if it is partly the meds., my thinking is different, I've come to some sort of acceptance or what. I too am so sick and tired of being sick and tired. At the beginning, I felt utterly useless and helpless. I've gone through the gamut of emotions, and still go through some to this day. Honestly, if it hadn't been for my faith, my husband and this forum, I don't know where I'd be today. I too have been told it's not "life threatening" but still wonder at times why no one can figure out the 5 W's concerning my health. At the beginning, I was homebound, and dare I say, close to agoraphobic. Now, I do get out more and I even drive when necessary. Like some of the other's have said, it helped me to have a sort of mantra, "I can do this", "What's the worst that can happen." "911 is just a dial away." When I'd get in the car, I'd have my kids read prayers to me from "Praying Through the Psalms" book. I would be shaky, sweating, and ready to have a meltdown, but just by hearing them read the prayers, I was reassured and was able to get to where I was going. When I got there I would feel so accomplished. I made it! I would tell myself.

Just like MomtoG said, "I do think the mind is pretty powerful and while I do not think positive thinking will cure POTS by any means, I do think it is a part of the coping and healing process." I personally rely heavily on my faith. I try to focus on what I can do and not what I can't, although it still bothers me that I can't do those things I once loved.

I feel that anytime someone is faced with a chronic disorder, there is a grieving process of sorts that many of us go through. I found the book: http://www.amazon.com/Coping-Chronic-Illness-Migraines-Fibromyalgia/dp/0736927069/ref=sr_1_1?ie=UTF8&qid=1373116056&sr=8-1&keywords=coping+with+chronic+illness to be quite helpful.

Everyone is different and responds differently. I know you mentioned OCD, of which I do have the tendency as well. It is hard for me to not be in control. I abhor it, but it is what it is and like it or not, it's my life now. I must dwell on what I can control and that is how I react and respond to all of this. I have good days and bad days, I have pity parties at times, but I think it's important to try to pick myself up and carry on the best that I can.

I do so hope that you can find your own way of dealing with all this and that you get relief soon. Feel free to pm me any time. Ranting is important in my book. As Shrek always said, "Better out than in." Of course, his reference was gas related, but I think it works for this situation as well

Be well,

Bebe

PTL!! Good for you, keep trusting

WOW, that's all for now...WOW!

Thanks Magenta, I'll check it out

Thanks for all the replies. It seems as though my health issues will have to be put on the back burner for now. Hubs has what seems to be viral Labyrinthitis and we still don't know what's going on with my daughter concerning her recent cardiac tests.

Not to mention that when I was in the dr. office a few weeks ago to refill a script, I asked her about a simple ANA test and she looked at me and said, "I can just look at you and tell you don't have autoimmune issues." So much for asking about testing. Might have to find a new dr. At this point, I'm just living with it all, trying to do what I can when I can. It's been four plus years now, what's a few more ?

Thanks again,

Bebe

Lynnie,

I'm so sorry you are going through this. I know exactly how you feel. There are lots of threads on here dealing with this issue. I really don't have any new answers for you, other than what you are already doing, but wanted to let you know that you are not alone.

The only answer I've been able to come across has been that since our ANS is out of whack, we can find ourselves in a constant "fight or flight" cycle. I know that for me, medication works for the most part (but of course not for everyone). I have found though, that the littlest things can set me off. I never used to be like this before being dx. I wouldn't say that I am/was a laid back kinda person either, but definitely not as sensitive as I am now. I can be very unnerving and scary.

Keep trying to find whatever method of relaxation works for you. I have also found the following book to be helpful.

http://www.amazon.com/Anxiety-Phobia-Workbook-Edmund-Bourne/dp/1572248912/ref=sr_1_1?s=books&ie=UTF8&qid=1372682023&sr=1-1&keywords=the+anxiety+and+phobia+workbook

Be well,

Bebe

Bananas,

That's exactly the way I feel too It's so frustrating when "on paper" and for the most part visually, we are "fine", but the way we feel is exactly the opposite.

Kat,

Sorry to hear that your going through this. I too am on Metoprolol and have been for 2+ years. Everyone is different and reacts/responds differently to medication. In my experience, unfortunately I have found no miracle pill (I wish ). I find that for myself, my vitals can be absolutely normal, yet I still feel like poop, go figure. I feel exactly as you explained. Some days are better, while others are worse. I wish I had some answers for you. Just know that you are not alone in any of this. I would hazard to guess that there are many on this forum that experience the same thing . Sometimes it's just a matter of listening to your body, knowing your limits and trying to find your "new normal".

Hoping you feel better.

Be well,

Bebe

I would click the "like this" button, but...I can't

Thanks for responding Alicia,

We've looked up Meniere's before (as I have severe ringing in my ears), he doesn't usually although the other day said that he had some ringing, don't think it's continuous though. He does not have nausea with episodes. In the last few days, he says the dizziness is dizziness now as opposed to just being a hazy/foggy type thing, and is more pronounced and continual. This am woke up and said that his chin was numb, he said it was really weird feeling and lasted a few minutes. He's working from home today, I can't tell you the last time he's missed work, it's been years. We go to see an ENT tomorrow and hope to get some answers, although he'll be a new patient, we're just hoping it's not just a consultation, but that the dr. will actually examine him and find out what's going on.

Anyone have any experience with Labrythitis?

About three weeks ago my husband began to feel funky (I know, real technical term ) His description goes something like this as per three weeks ago: dizzy (no vertigo), brain fog, eyes not focusing or tracking right, flushing feeling, general crappiness, feeling pressure behind eyes and ears, feeling as though he's coming down with something-cold-like. He'd just had blood work done and all routine labs came back normal. He went into the GP. She sent him for a carotid US and a brain MRI. All came back fine. She referred him to an ENT and suggested he might have Labrynthitis or Neuritis (both Vestibular disorders). She wants him to be seen ASAP. He has an appt. for this Friday afternoon. This morning he called me and told me he had his first bout of what he says seemed like vertigo (although he's not sure because he's never experienced it before). He said he bent down to get his briefcase and on the way up felt spinning feeling and had to grab hold of the counter as he felt as though he might fall over. He came home a few hours later. He says if he stays still it's not that bad, can't make sudden head movements or bend down and has a headache in the back of his head.

We've read up on the condition. Just wondering if anyone has any experience with any of this.

Thanks for any help you can offer.

Be well,

Bebe

Right there with you Freaked. I'm so sorry you are having to deal with this, and I know how wicked scary it can be. I never go anywhere without the Hubs (aka-my American Express card)

Wishing you all the best.

Be well,

Bebe