summer

I have learned not to make assumptions about people's lives, or health based on how they look, or how they appear to be functioning. I have to admit that this was a lesson I was already learning because my son has autism, and I have had so many people give me nasty looks because of difficult behaviors in the grocery store or at church. He is a beautiful "normal" looking child. My own illness has reinforced this lesson for me. Things are not always as they appear. I never look at people anymore and wish I had what they had, because I know now that I have no idea what their life is really like, or the difficulties they face. I really try to enjoy the good things in my life, and there are many. Summer

Hi Rene, I've tried both. The clonidine really dropped my BP, but my BP was low to start with. It was perscribed for me before I was properly diagnosed. It was not the drug for me. I've also tried D-Ribose (Corvalen is the same). It is pure sugar. Apparently, according to a recent study, it helped 2/3 of the participants diagnosed with CFS/FM to improve energy levels. I found when I took it, it made me tachycardic. I was not surprised, because anything that is high in carbs will do this to me. It was like eating a chocolate bar for me. So, that one was not for me either. It shouldn't hurt to try it though, as it is only sugar, not a drug. Good luck, Rene. It is difficult to know what to try when we are so sensitive to new meds. Summer

Nina, That's fantastic! I've always wondered how you guys found all the good stuff! Thanks a lot for letting me know how to use that. I'll have no more excuse for not being up to speed on new research now. Summer

Thank you sooo much for posting this. I have been talking recently with my doctors about this but haven't been able to find anything very current! Can't get much more current than that! .....Got to go and email that link to someone now.... How do you find all the really current research? MANY thanks!! Summer

You are very courageous to have spoken up about what has happened to you. I am so glad you were respected during the interview. We all see so many doctors here. I appreciate your reminder to go with your gut feeling if something doesn't seem right. I hope you are able to use the counseling that is being offered to you. I'm sure it will be important for you to be able to talk about this, probably many times, in order to deal with it. I will pray for you and the other woman involved. Are you able to get any sleep yet? So sorry you are going through this. Summer

Yes, definitely. I can develop either "coat hanger pain" or migraine from standing too long.

I can sooo relate to your difficulty in explaining this to doctors, employers, etc. I really encourage you to stand your ground, and not be pushed back before you are ready. Nursing is physically and cognitively demanding. I am presently trying to work 2 hours at a time, doing mostly non-nursing duties, and I am finding this really difficult. I am doing "sit-down" work, but the concentration required really takes a toll on me. Some of my co-workers who see that I am doing some work, have all kinds of suggestions of things I could do like transcribing orders, reviewing medication profiles, double checking med sheets at the beginning of the month. I really am not able to do these things and it is so hard and embarassing to try to explain this. It adds to the stress, which of course, is even more tiring. I am becoming more and more convinced that I am not going to be able to return to this type of work - even sitting. There is so much pressure to return with nursing shortages, etc. My co-workers also do not understand how it makes me feel to be there doing non-nursing tasks while they talk about how they are working short staffed that day, or how they are not able to get vacation time because of staffing issues. I feel a lot of guilt when they talk about these things around me. They do not hesitate to ask when I think I will be back to full duties. As hard as it was to be off work, I am finding it even harder to be back, and not able to do what I was trained to do. Take your time, hold your ground, and get better if you can. If not, don't go back unless they offer you something that you are sure will not compromise your health. So sorry you are going though this too - you totally have my empathy. I really hope you are starting to feel better. I also would be flushed, probably for the rest of the day, after a stressful appointment, and I have certainly had some where I did not feel like I did a very good job of explaining myself. Adrenaline hangover!!! I know exactly the feeling you are talking about. Take good care!! Summer

Yes, I have all these symptoms as well. 1. Do you seem to pool or have you been told you pool in your hands and feet, stomach or everywhere? I have a small amount of pooling in my feet and hands when standing, but I believe most of my pooling is probably in my stomach. 2. Do you suffer from cold feet and hands similar to raynauds syndrome? Yes, I have raynaud's and my hands and feet are freezing all the time. 3. Do nurses have trouble finding a vein when trying to needle you? No, I have thin skin and my veins are easily visable. My anticubital veins are large, but easily blown. 4. Is anxiety or a hyperadrenergic presentation one of your problems with POTS? Yes, a hyperadrenergic presentation, I would say. 5. are your symptoms worse in the mornings? Early mornings are bad, then bad from early afternoon on. 6. Do your symptoms wax and wane or are they constant? Wax and wane, but never gone. 7. Was the onset of your POTS abrupt, sudden or mild then sudden? Mild symptoms always (mild-moderate as a young adult), but suddenly disabled after a virus at 40.

I have raynaud's as well. I have always had very cold hands and feet, but this past winter I began having episodes where my fingers or toes would turn completely white and numb. I looked up chillblains and wonder if I get these too. I get small red bumps, mostly on my knuckles which are very itchy. They can get quite red and inflammed, but have never become open sores. I would describe them as more itchy than painful. Could this be chillblains? I've always wondered what they are.

I don't think I have much swelling in my legs, although maybe a little. Maybe I am an abdomenal pooler. I'm still trying to sort it all out, I guess

I usually feel rotten for about an hour or two after I get up, but I get up early to get 3 kids off to school. Then I have the best part of my day for the rest of the morning. It's usually down hill from noon until I totally hit the couch by 2-3 pm. The next 5 or 6 hours are bad - right over supper time and the time I should be helping with homework, etc. This is really hard, because I feel like it is the time I am needed the most. I often feel a little better by 7 or 8pm and get to enjoy some time with the kids, although it's not usually anything very active. I also have a lot of trouble with sleeping at night, but I have never been inclined to sleep in. Infact, I usually wake way too early. What a messed up schedule.

Thanks for the replies. This is something I've experienced as long as I can remember, and thought everyone did until just recently when my husband told me this does not happen to him. My daughters complain of this as well. Maybe it is subluxation. Very interesting that PT helped. Summer

Hi Jana, I guess you're right that I will just have to try them to find out. It's interesting to me that they did not really help you, and your POTS is low flow. Do you find you have any swelling in your legs? Thanks, Summer

I have been suspecting maybe my POTS might be the low flow type, although I'm not sure. I have noticed that compression stockings do not help much with my symptoms. I have to admit, though, I have not gone all the way to the waist high type. They are expensive and I don't want to put more money into something that won't help. Is it possible that compression might not work for the low flow type of POTS - since everything is constricting anyway? Any thoughts or experience??

I must look better than ever, because everyone who sees me tells me how great I look! -- even though I feel terrible. Actually, I don't believe my appearance has changed. Summer

I have often read the term subluxation here in relation to joints and EDS. I am wondering what subluxation feels like. I often get feelings in some of my joints like they have popped out of place a little. I get it a lot in my ankles. I feel like I have to rotate them around or stand up and walk until they pop back in. Its uncomfortable, but not terribly painful. I can't ignore it, though, and HAVE to get it back in place right away. I also get it in my hips, knees and elbows. Does this sound like subluxation? In which joints do you usually feel it. Thanks, Summer

Tearose, Hope you feel better very soon. Thoughts and prayers for you. Summer

Hi Ernie, Glad to hear you are feeling well enough to be keeping busy. Take care, and pop in when you have time to let us know how you are doing! Summer

Hi Chrissy, Sorry to hear your mom is not feeling well. Does your mom have symptoms of orthostatic intolerance as well (lightheadedness, fatigue etc. that are worsened when standing)? According to Dr. Satish Raj at Vanderbilt University, orthostatic tachycardia alone is not diagnostic of POTS. The tachycardia is also accompanied by symptoms of OI for at least six months. "POTS is defined (Table 1) as the presence of symptoms of orthostatic intolerance for at least 6 months accompanied by a heart rate increase of at least 30 beats/min within 5-30 minutes of assuming an upright posture. This should occur in the absence of orthostatic hypotension (a fall in blood pressure >20/10 mmHg). The syndrome must occur in the absence of prolonged bed rest, medications that impair autonomic regulation (such as vasodilators, diuretics, antidepressants or anxiolytic agents), or any other chronic debilitating disorders that might cause tachycardia (such as dehydration, anemia or hyperthyroidism). It is important to recognize that this syndrome is typically disabling. Hence, the mere observation of orthostatic tachycardia is not, by itself, sufficient to make the diagnosis of POTS." You mentioned that your Mom has risk factors for heart disease. Is she on medications for any of these (ie. high BP)? Some meds can cause similar symptoms to POTS as well. That might be worth looking into. Summer

Hi Steph, Welcome! Glad you found us. There are a lot of helpful members and lots of good info on this forum. Sounds like you have gotten the "run around" from docs for a while too. Most of us have been through that, and it is a good to get a diagnosis so you can finally begin proper treatment as well as gathering info to help you better understand what's making you feel this way. I have been on Florinef for almost a year now. The information I have says it takes 1-2 weeks for it have it's full effect. For this reason, the dose should not be changed more often than that. I have found it works well for me, but it works only in combination with salt, so it is important to get enough. From what I gather on this board the amount needed seems to vary from person to person. My ANS doctor suggested that I add 2 gms daily to what I was already taking. I always used a lot of salt anyway, because I craved it. I really don't know about B12 because I have not used it. My blood level is in the normal range. To tell you the truth, I have not had great success with compression garments, but I believe many here have. Glad to hear you are still able to attend class for the most part. Sounds like you have also found an exercise program that is working for you. That is great. We're looking forward to "seeing" you around! Summer

Thank you, Janie, for taking the time to post this. It is very helpful to me. It sounds like you experience a lot of discomfort with SFN. I'm sorry to hear that you feel these sensations in so many parts of your body. I find it terribly uncomfortable at times, but mostly in my legs. I do get tingling in my hands as well, but no pain. I'm glad your hubby is so understanding ! At this point, I'd rather tolerate it (so far, I still can) than add any more meds. But it's good to know there are options if it becomes worse. You specifically mentioned that it would not show up on an EMG. What about nerve conduction studies? - would that be diagnostic (I don't think they are the same, but correct me if I'm wrong). Interesting that yours began on your shins...hmm.... and yes, now that you mention it, it's not just heat that makes it worse. It's also stress and activity. Thanks again. You've been a big help. Summer

I have quite a bit of numbness/tingling/pain in the front of my left shin. It can also include a sunburn-like feeling on the skin over that area - very sensitive. When it's at it's worst it goes down onto the top of my foot. Occassionally, I have a little bit of the same on the right side, but never as bad. Hot weather or a bath make it worse. It also seems worse when I get into bed at night. Could this be small fiber neuropathy or does that only happen in the feet? Does heat make SFN worse? I'm not sure if this is worth pursuing with my doctor. If there is nothing that can be done about it, I'm not really anxious to do any more testing. Does this sound like small fiber neuropathy? Thanks, Summer

Yes. Broken Shell's answer is very good! I also have a pattern and have wondered... When I get over my early morning "feeling really bad" period, I have the best part of my day (energy-wise) from about 9-12. I do what I can during this part of the day (with breaks) until I feel really fatigued again any where from 1-3, depending on the day. At that point, I end up spending most of the rest of my day doing nothing... lying down. By about 7 or 8 pm, I actually feel a lot better because I have rested or been off my feet for 5 or 6 hours. I tend not to do much in the evening, just try to enjoy some quiet hours with my family. I always figure this long, neccessary break in the afternoon improves the way I feel in the evening. Does this make sense?

I agree. I think too as people with an "invisible" disability we understand better than most that we can not always tell to look at people exactly what they go through in their lives, and what suffering they may endure.

Sorry guys. I wrote "nausea" and then "gi symptoms (including nausea)" Is there anyway to fix it? Oh... and I admit, I voted "brain fog". Summer