Angelika_23 Posted April 14, 2009 Report Share Posted April 14, 2009 Hello,I am so miserable I don't know what to do. I'm in so much left sided pain it is making me crazy. My chest has been hurting too, and I wake up forcibly with a rapid heart rate. Now I'm afraid to go to sleep. Which doesn't help.The left side of my body, from my face down to my calf, is HURTING. My arms and legs on the left side are darker in color than the right side. I'm having dizzy spells. The list goes on and on. I think I was out of bed maybe an hour today total.No doctor around here seems to be able to help me. I have an appointment at CC at the end of May, and I'm on the cancellation list, but that is so far away and I'm hurting so badly.I know you've all heard this before, and I am grateful for you being here and listening once again.Angela Quote Link to comment Share on other sites More sharing options...
rymac Posted April 14, 2009 Report Share Posted April 14, 2009 AngelaSorry you are in such pain. I hope you have some kind of medication for relief. Hang in there.bluesman Quote Link to comment Share on other sites More sharing options...
mjan Posted April 14, 2009 Report Share Posted April 14, 2009 Oh my sounds terrible Angela..HUGS!!Do you think it may be a nerve thingy?? After all ..nerves HURT!!And you saw someone and no luck?? Did you go to the ER?? Have a scan..MRI??I just feel so bad for you..keep us informed ok? Remember.. you are NOT alone!!Warmly, Jan Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted April 14, 2009 Report Share Posted April 14, 2009 This whole left side pain thing STINKS and I hate hearing this.I can not wait for you to get some CC answers. Wish words could do more for you, sweetie.Can you tolerate ANYTHING for pain, though I know nothing helps nerve pain much.Geez. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted April 14, 2009 Report Share Posted April 14, 2009 Hi,Sending hugs and support. Hang in there - pray, listen to music, try to focus on watching a movie... you are not alone! Don't hestitate to go to the ER - they just might have something to help the pain or can at least monitor you. Keep us updated!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted April 14, 2009 Author Report Share Posted April 14, 2009 Thanks everyone.I made the effort to go to work today, still feeling badly but still better than yesterday. I should have stayed home. Can you say HOSTILE ENVIRONMENT??? Apparently my coworkers don't appreciate it when I'm off, and I got an earful today. They were very mean about it. I guess they think I'm faking. I was so upset I was shaking, then I went and cried. I hate that. At least they didn't see me cry...Rats, what a bad day. Quote Link to comment Share on other sites More sharing options...
mjan Posted April 15, 2009 Report Share Posted April 15, 2009 Thanks everyone.I made the effort to go to work today, still feeling badly but still better than yesterday. I should have stayed home. Can you say HOSTILE ENVIRONMENT??? Apparently my coworkers don't appreciate it when I'm off, and I got an earful today. They were very mean about it. I guess they think I'm faking. I was so upset I was shaking, then I went and cried. I hate that. At least they didn't see me cry...Rats, what a bad day. AGAIN.. HUGS!! Boy do I know how you feel. I too missed work yesterday.. first I called in layed down..felt better got up and told my boss I was coming in.. then had another "episode" and had to call in a 2nd time. I felt dismissed today. I dont know what is worse..but NOT being understood..or midjuged IS terrible I know!!Just remember.. you have US.. and WE understand..dang them folks..shakes up your sense of security now doesnt it?How's the pain now? Getting ANY relief?? Is it muscle pain or what?Fondly, Jan Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 15, 2009 Report Share Posted April 15, 2009 Can I assume that you know for a fact that you don't have shingles or fibromyalgia? Quote Link to comment Share on other sites More sharing options...
all4family Posted April 15, 2009 Report Share Posted April 15, 2009 I am so sorry to hear you are in so much pain. I also have symptoms worse on my left side, and one side will turn purple while the other doesn't. Sorry your co-workers were so insensitive to your pain, and what you are going through. It sure would be nice to have compasion instead of anger. I hope you find some relief real soon.understanding HugsSuzy Quote Link to comment Share on other sites More sharing options...
mcaimless Posted April 15, 2009 Report Share Posted April 15, 2009 I will also emphasize that your pain sounds more like fibromyalgia than typical dysautonomia. Have you seen a rheumatologist? Also have you tried Lyrica for neuropathic pain? Doctors who diagnose and treat POTS rarely if ever realize that fibro often presents with autonomic dysfunction. It's still a very poorly understood and (in my opinion) very underdiagnosed syndrome. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted April 15, 2009 Author Report Share Posted April 15, 2009 I have been diagnosed with Fibromyalgia (it's in my signature) and I have seen a rheumatologist at Cleveland Clinic once. She wants to throw more drugs at me, and the risks with some of the newer ones scare me. I am not sure I'm willing to trade less pain for the possibility of developing cancer in the future...I thought I read somewhere that Fibromyalgia presents on both sides, not just one? I would really like to hear from you that have one sided fibromyalgia.It feels like very deep muscle pain that nothing will touch. I was about to break out the vicoden but it has started easing some. I am still sore, and limping on the left side when I first get up.My husband sent me a "cookie bouquet" today at work. The card simply said, "I love you". Isn't he wonderful? Thanks for all your support, everyone. Angela Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 15, 2009 Report Share Posted April 15, 2009 Hi Angela,I haven't been formally diagnosed with fibromyalgia, but I have very bad muscle pain in more areas than the normal POTS coathanger pain. The one miracle drug for me was Lyrica. Unfortunately I couldn't tolerate the side effects but I didn't realize how much pain I was in until the lyrica took nearly all of it away! Neurontin helped somewhat also.You hubby was so sweet.... I'm glad you're feeling a little better today, Janie Quote Link to comment Share on other sites More sharing options...
mcaimless Posted April 16, 2009 Report Share Posted April 16, 2009 My fibro pain wanders all over the place. It can be one sided much of the time (my RA inflammation and pain is usually bilateral though). I agree that I'm not keen on drugs but I don't think that Lyrica or Neurotin have CA risk. And I'm even less keen on narcotics like Vicoden. I currently take a baby dose of Lyrica (just 25 mg at bedtime) and it controls my neuropathy pain in my feet and hands. I always start at about half the dose of any meds I'm trying to see if I can get by with the least amount possible. I was not able to tolerate Cymbalta but it's supposed to help many who can tolerate it (my sister-in-law with fibro swears by it). I'm currently doing a trial of a medication called low-dose-naltrexone (LDN). I just started on it so it's too early to tell but I suggest you google and read up on it. The dosage is very low and there are really no downsides to trying it (except you can't take opiates while on it because it binds with opiate receptors?and since it?s an off-label use it can be challenging to find a prescriber, I had to go to a naturopath but there are docs who do phone consults and prescribe). There is an ongoing clinical trial of LDN for fibromyalgia at Stanford and from what I've heard the results are promising. Keep searching for what works for you! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 16, 2009 Report Share Posted April 16, 2009 Hi,I just looked up the diagnostic criteria for Fibromyalgia, and it does say it has to be on both sides of the body. I am not sure what you describe sounds like fibro. What kind of pain is it??? Can you tell if it is muscular, nerve, bone, etc. What does it feel like throbbing, shooting, aching, etc.???I wonder if it is purely one sided if it is not more related to Chiari and scoliosis that you have listed as diagnoses??? If you google radiculopathy- does that sound like the pain you have? Do you know if you have pinched nerves etc? The redness I am not sure about... It could be a sign of increased blood flow to the skin on the affected side. Possibly due to pain, inflammation, or an overall "miscommunication" of nervous system on that side??? There also is the pain associated with Chiari that I am not real familiar with.The suggestion that it could be Shingles or Herpes Zoster is also a good idea. Does that sound like a possibility?I hope you can get some answers at CC!!! Who are you seeing? Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted April 16, 2009 Author Report Share Posted April 16, 2009 It is a constant sharp ache is the best way I can describe it. Like deep muscle, nothing can touch it. I am also noticing that I can't type as well as I used to, the letters I type with my left hand are often out of place. I don't have shingles, unless you can have them with no skin markings. I have had them before so I know what to look for. Quote Link to comment Share on other sites More sharing options...
mcaimless Posted April 16, 2009 Report Share Posted April 16, 2009 Here is an article on chest pain and fibro. Please understand that while the diagnostic criterea for fibro includes widespread pain throughout the body (and presumably you had this with numerous tender points at your time of diagnosis) the acute pain episodes can be one sided and migratory. The chest pain and high pulse rate is a very common part of the syndrome. http://www.fibromyalgia-symptoms.org/fibromyalgia_chest_symptoms.html Quote Link to comment Share on other sites More sharing options...
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