Babettegall

Deucy - My doctor put me on Lyrica a short while ago, but no such relief. There was relief for the burning sensation in my feet, but not the rest of the deep down pain I have 24/7. Yes, it was what I was referring too, when I mentioned the neuro pain meds. I'll have to bring up the cymbalta to my doctor and see if it's worth trying. I found that the Lyrica made me dizzy, so he pulled me off it. Thanks for throwing that out there, as it never hurts to try alternative meds in order to find one that works. Funny how meds work for some, and not for all........

Hey Dizz....... I can really relate to the pain you are going through. I have been battling with severe pain in my legs, hips, back, neck for the past year when my symptoms went haywire on me. Unfortunately, my doctor just writes it off to fibromyalgia, and hands me my vicodin prescription with refills. It's getting to the point, where my body has worked up a tolerance to taking 10/1000 mg every 3 to 4 hours of vicodin, and the pain still persists. This has been such a great source of frustration since, the pain and lack of being able to properly sleep and get comfortable makes me so cranky! I'm seriously considering looking at ordering oxycontin over the internet, to see if that will help any. I've tried the neuro pain killers, which helped with some of the burning sensations I had in my feet, but the bone crushing pain throughout my body wasn't touched or relieved. If you are able to get some relief, please let me know, as I'm also desperate for a reduction in pain. The only time I'm able to get any rest is when I take an extra vicodin and lay down and sleep out of pure exhaustion! I didn't find stuffing pillows beneficial for me, but maybe they will benefit you some. Hope you find some comfort soon!

Hi, I wish the system wasn't so difficult to try to get approved for benefits, but if it weren't, no one would work, right?! I am currently recieving long term disability, and waiting a reply on my SSDI application. The LTD company is actually providing me with an attorney should I be denied SSDI benefits. I'm not looking forward to all the proceedings and potential court dates, but know that it's something I will have to do, if the SSDI isn't approved. I hope everything goes smoothly for you, and that the decision to get you approved isn't too far away! Good luck

Michelle, I wish I could say that I didn't know what you were talking about, but then I'd be lying! It's such a weird feeling to try to describe to others who don't have a clue as to what I'm trying to say...........I've been having more and more episodes lately where I'm having this strangeness happen too........... it's probably time to tell my doctor, isn't it? You're not alone on this one, dear! Just wish someone would respond to your post with what's going on physically and what the doctor did about it (if anything can be done). I'll be sure to check back and look for updates, or provide my own when I next see my doctor (in January sometime). Hang in there........ Babs

That's great news!!!!!!!

Ernie, I'm also very sorry that you are having to mourn the loss of the life you once lived. Tomorrow is another day, and you won't have to focus on the dreaded anniversary for another 364 days! Okay, I realize that my words aren't comforting you.......... but, my most sincere heart felt "I'm sorry" and "hugs" are sent your way. Babs

Jacquie, Although I've noticed "lumps" in my neck periodically, I don't have any lumps in my mouth. I think it's when I'm fighting some sort of a "bug" or something. What you described sounds sort of scarry to me. Hope your appointment proves that it's nothing to be concerned about! Take care, Babs

Oh Tessa, I'm really very sorry to hear about your recent cardio experience. Thank goodness you didn't have a heartatache or blocked artery, who knows how this clown would have treated you! Probably would have told you to take an aspirin and get on with life! Either way, it's an unfortunate ordeal to have to go through. I really think they have no idea what it's like to try to muster the energy to go to the darn appointment in the first place, let alone be jerked around when you get there. All we want is some comfort and reassurance that our doctors are going to work WITH us to get the many symptoms in check as possible. One would think we were asking them to turn water into wine! As the rest of the responders have stated............ seek another cardiologist. Then, be sure to pass along the name of the "good" one you do find! Hope the next appointment goes better than the first one. Lastly, did you ask your pcp if you should change beta-blockers, when it's obvious this doctor didn't take everything into considreation? I'd be very, very skeptical of changing meds that have helped you........ but, that's just my opinion.............and just like rear ends, everyone has one! Hugs, Babs

Wow, I never thought about when I take my florinef, as the doctor never said one way or another. I take my dose first thing when I wake up (which varies day to day). I'll try to remember to ask my doc next week, if taking the meds at the same time each day will make a difference. Then, I'll try to remember to share the info!

Strange symptom dear......... hope you've quenched your thirst by now! I've gotten the same way a time or 100 in the past, but never sure what caused it. I simply increased the fluids, found a comfy spot by the bathroom to hang out, and let it all pass (literally and figuratively speaking). Hope you don't have to endure much more of this! Hugs, Babs

Wow, I'm surprised by how many responded in great detail about the darn leg pain (or various pains in gerneral). My head is pretty mixed up right now from reading all the responses, so I can't really go back and pin point who said what, and who's points I'm trying to respond too..........but, I have to chime in. In a very sad way (you all know what I mean), it's good to know that I'm not alone in this. The pain has been the most unbearable pain I've experienced. I'm so thankful that I haven't had any jaw or tooth pain, but I have had facial muscle pain before. I see my doc again next week, and am hoping to try something other than the Lyrica and vicodin he's prescribed for me. The Lyrica is helping with the burning sensation in my legs/feet, but not touching the deep, aching, sharp, stabbing, pain in my legs. I'm not looking forward to the doctor and office staff looking at me like I'm some sort of pain med junkie either. Please, oh please, just help me get comfortable.!!!!!! If they only understood what it's like to live like this day in and day out. Let's also remember that this is only ONE of the unpleasant symptoms I/we are dealing with. I have never been tested or dx'd with rynauds (sp?) before. Sounds absolutely awful! But, I can tell you that when I deal with anything from the freezer, refrigerator, or even cold water, my entire arms ache.......does that make sense? I'm also finding it more and more difficult to have anything touch my skin on my legs/feet when the pain is at its worst. Just having my legs touch each other sends the pain off the scale! Sorry for throwing my own little "pitty party" while trying to respond to this post, as that wasn't my intention. Maybe through all our sharing we will find that there is something connected to all this pain, and find a way to ward off or lessen the intensity of the pain. I dunno, just hoping, I guess. Thanks for listening......... Babs

Ah, welcome home! Take it easy now!

Hi Dizzydaze and welcome! Hmm?? I'm going to try to do my best to answer your questions regarding the "dizziness" associated with MY pots. The symptoms can vary from person to person, so you might get a wide variety of responses from others. Let's see.......for me, my dizziness can come about when I stand, however, it has also come out of no where when I'm sitting and or laying down. There are episodes (when the dizziness is a primary symptom) when I don't get dizzy when I stand, but after standing maybe 5 minutes, it comes on really bad. For me, the dizziness is hard to describe. It's not necessarily where the room is spinning, but more of my head spins (inside) and then I get a rush of other symptoms (syncope = fainting). For me, I find that the stress/noise/extra stimulus from being at the mall, grocery store or simply out in public can make my symptoms worse. There really aren't any positions that I'm free from the symptoms. I hope that this helps you in your getting answers, and it will be interesting to see how others respond. Good luck to you and please feel free to ask as many questions as you want...........we are all here for each other! Hugs, Babs

Sue, I hope Kelly gets better real soon! Hugs to the both of you!

Hey there Jacquie! I completely understand about not being on and posting as much lately, due to being symptomatic, as I've been the same lately! Keep us posted on how everything goes at Boston Clinic, okay? I'm sure the sleep study will be an interesting deal too! Maybe between the sleep study and seeing all the docs at the Boston Clinic, you will be able to find out what's causing all the troubling symptoms you mentioned. Hope all goes well........ Babs