LadyLynda0712 Posted June 22, 2019 Posted June 22, 2019 Hi all, Just an update from first Dr. appt following my pneumonia and subsequent lung nodules. Dr. said my pneumonia was most likely "atypical mycoplasma." He didn't totally agree with Radiologist's readings and said the scan was "off" and was a bit tough to navigate to find the said nodules. He agreed it would be warranted to do a follow-up scan in August. We went over my shortness of breath, lymph node tenderness, "bone pain" and sleep/sweats issues. He said he had a good idea of what I have and asked me to extend my arms. He just lightly touched areas around the crease of my forearms and I just about hit the roof. He tapped a couple of places on my chest then the back of my neck. Ouch! His diagnosis: Fibromyalgia. Huh. Of course I googled it and he was 100% spot on with that. Prescribed Lyrica (I can't get it, pending insurance approval) and I'm already on Cymbalta for depression. Wants to see me in 4 wks, with instructions to get blood work he ordered a few days before appt so we can discuss. Soooo... I'm still not convinced there isn't something going on but now I have this other ailment to check into (the fibromyalgia). To make things more complex for my doc, I have Lymes as well (diagnosed 3 yrs ago). All these overlapping symptoms!!! Ugh!!! Just wanted to check in and update. Cough is better but I do have some wheezing (which naturally I didn't have at time of Dr appt). I'm glad he will be doing a follow-up CT and this time I'm going to my usual hospital; not that the ER near my home wasn't fine, but the hospital I usually have gone to does have more updated equipment. Thoughts on findings?
Rower Michelle Posted June 22, 2019 Posted June 22, 2019 Hey there, I’m so glad you’re starting to feel a tad better and through persistence, you’re getting closer to figuring this out. Fibromyalgia is real and can be difficult to treat. The meds don’t consistently work. For insurance you may have to go through a “fail first” approach to get through the insurance requirements. Have your doctor file an appeal anyway. Many of my colleagues had this to no avail, then acupuncture worked! Takes some investigating and a little investment with long term improvement. Don’t give up- you can and will be well again!
Irwin1 Posted June 22, 2019 Posted June 22, 2019 Wow. Your story is so close to mine..I was sent to the ER and ended up with pneumonia and that's when they found the mass on my lung. A mass is oversized nodule. I feel for you with the extra illnesses that you have to deal with. I have some extra stuff besides the mass. I'm dealing with an anxiety disorder I had all my life. I am dealing with this threat of LC. If it helps I know that the treatment can be rough with side effects. So I try to celebrate each day that I'm not nausea and I am not feeling weak. I do have terrible muscle pain in my calves and legs. Actually it's my whole body. But I know from my college days that when I had finals I got a lot of these muscle aches from the stress and adrenaline that was being released. I am not saying that you have this. But the anxiety and adrenaline can have a huge affect on the body. I am happy that the doctor didn't tell you anything that was totally terrible. That is always reason for celebrating. Hope you can keep getting that good news. Actually good news 👍 is really great news.!!!!
Tom Galli Posted June 22, 2019 Posted June 22, 2019 LadyLinda, My thoughts on findings? If the follow-up CT clears you of lung cancer, I say celebrate. Fibromyalgia is not a walk in the park but symptoms can be addressed and more importantly, it is not cancer. So... Stay the course. Tom
LadyLynda0712 Posted June 22, 2019 Author Posted June 22, 2019 2 hours ago, Tom Galli said: LadyLinda, My thoughts on findings? If the follow-up CT clears you of lung cancer, I say celebrate. Fibromyalgia is not a walk in the park but symptoms can be addressed and more importantly, it is not cancer. So... Stay the course. Tom I agree; I guess it's just a gut instinct kind of thing (my Mom was VERY intuitive and so am I) that something is "off" (we all know our own bodies better than anyone) and if it's the Fibromyalgia alone I am already starting to deal with that, but more than my body pain I still know my lungs aren't "right." I've never wheezed and had shortness of breath and the reddish/pink phlegm is disconcerting. I guess as you've said, I really kinda have to wait until August now to know more. Until then (and even after then) I will forever be conscious of my lung health and be mindful of changes. This pneumonia or whatever he called it, really knocked me for a loop. I don't feel good and that's all I'm sure of right now.
LadyLynda0712 Posted June 22, 2019 Author Posted June 22, 2019 5 hours ago, Rower Michelle said: Hey there, I’m so glad you’re starting to feel a tad better and through persistence, you’re getting closer to figuring this out. Fibromyalgia is real and can be difficult to treat. The meds don’t consistently work. For insurance you may have to go through a “fail first” approach to get through the insurance requirements. Have your doctor file an appeal anyway. Many of my colleagues had this to no avail, then acupuncture worked! Takes some investigating and a little investment with long term improvement. Don’t give up- you can and will be well again! Thank you, Michelle--my "trigger points" are really, really sore. Whole body hurts, especially in the mornings. Haven't had restorative sleep for I don't know how long. I kept chalking things up to "well, I'm over 50 now" and "well, I should shed these 40+ pounds..." I don't know anyone (surprisingly!) that has fibro and have only heard of Fibromyalgia in passing on television. I'm starting right off with the vitamins I know I'm chronically low on (Vit D and Potassium) and will try lavender Epsom Salts at night to see if it helps me sleep. I'll keep you posted.
LadyLynda0712 Posted June 22, 2019 Author Posted June 22, 2019 3 hours ago, Irwin1 said: Wow. Your story is so close to mine..I was sent to the ER and ended up with pneumonia and that's when they found the mass on my lung. A mass is oversized nodule. I feel for you with the extra illnesses that you have to deal with. I have some extra stuff besides the mass. I'm dealing with an anxiety disorder I had all my life. I am dealing with this threat of LC. If it helps I know that the treatment can be rough with side effects. So I try to celebrate each day that I'm not nausea and I am not feeling weak. I do have terrible muscle pain in my calves and legs. Actually it's my whole body. But I know from my college days that when I had finals I got a lot of these muscle aches from the stress and adrenaline that was being released. I am not saying that you have this. But the anxiety and adrenaline can have a huge affect on the body. I am happy that the doctor didn't tell you anything that was totally terrible. That is always reason for celebrating. Hope you can keep getting that good news. Actually good news 👍 is really great news.!!!! Hi, I do have major depressive disorder and PTSD (I witnessed an accident that claimed my 5 year old daughter's life) and am constantly in "fight or flight" mode & it's terrible. I like to think I've been superbly stoic and "in control" when I know now in reality, I can "fake it til I make it" all I want, my mind and body, however, takes the beatings. I know suppressing emotions over the years has directly contributed now to my migraines, high blood pressure and now, Fibromyalgia. I have been in various therapies and twice hospitalized for the PTSD. I get horrible "Charlie Horses" in the weirdest of places--the back of my upper thighs. Omg--those HURT. I do find they have lessened in intensity and episodes since drinking a glass of apple cider vinegar in the morning. I can't say I religiously do it, but if I do it 2-3 x a week, it's a good week. Not the greatest of drinks to down, and adding some honey makes it more palatable, but I do believe I've had some measurable benefits. Give it a try if you haven't!
Tom Galli Posted June 22, 2019 Posted June 22, 2019 LadyLynda, A couple of comments on your symptoms. First Charlie horse or muscle cramps: I have this in spades and it is due to low magnesium in my blood. My cause is a side effect from Taxol and Carboplatin. My oncologist has me on 1,000 mg of Magnesium a day (I do 500 AM and 500 PM to spread the digestive disruption). Low Magnesium has other causes. Ask the next doctor that runs a blood panel to tell you your Magnesium levels. Less than 1.8 is low. I've had more pneumonia episodes then I care to remember. Several resulted in reddish/pink phlegm and quick CT scans. The scans ruled out lung cancer recurrence but confirmed pneumonia. So for some of us, coughing from pneumonia will cause blood in the phlegm. My pulmonologist told me to purchase a albuterol nebulizer and gave me a script for albuterol. I use it 4 times per day and combine it with hot steamy showers to loosen things up and ease my congestion. That works for me. Stay the course. Tom
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