Latest update on what's been going on

[Cindylou]

Hi all, trying to figure out where to start with this latest update, w/o getting too long winded. I had another ER run this past Monday morning, so 9 days after the last one. What precipitated it was very sharp left sided chest pain and deep shortness of breath, that bolted me up in bed about 3 am Monday morning. After discussing w/ my husband who was about to catch another plane out of town for the week, he said he really thought we needed to head back to the ER...different one this time. My pick of choice, always....but 9 days ago my husband thought it too far to drive in my condition to my preferred hospital. They ended up keeping me for two days for observation while they ran extensive tests. Of course, always the life threatening ones first. It honestly felt like another pulmonary embolism. But all the tests came back negative. So they discharged me Tuesday afternoon, knowing we were waiting for one more test result, of which I had requested. The TSH Thyroid test. Just got the results back this afternoon, and it looks like it is my thyroid. Hypothyroidism, to be exact. I truly have had pretty classic symptoms: extreme fatigue, dry skin, dry scalp which is starting to crust over with pustules it is so dry; brittle nails, weight gain, real lack of concentration and foggy brain. Even shortness of breath and some chest pain can be symptoms, which I never knew! Will see doc early next week to start on a trial of medication. See? I'm not crazy. This woman knows her body spot on, when something is wrong. So very relieved to have that one figured out, because I'm practically falling asleep as I write this, I am so fatigued.
on RFA procedure too....saw Nurse Practitioner yesterday morning and told her I was getting discouraged on the procedure not taking effect yet. It's been 16 days. She said it can take 4-5, or even 6-8 weeks to feel the full effects of the radiofrequency ablation. I did not know that. So that was quite encouraging. I also told her I thought I should begin to taper off the fentanyl patch since it wasn't helping me anyway. She agreed, so we are doing that while we up my Oxycodone for awhile in between, and I am being put on Gabygentin (sp?) for the nerve pain instead, and will titrate up on that. I am sure I am leaving something out, but that is the jist of it, I think. I can always add something later. So thanks for listening.

[linda]

CL,
I'm so glad you finally got to the root of your condition. Hopefully the meds will help. What a relief! I have some of that gabapentin stuff but I haven't given it a chance. They say it is supposed to help with nerve pain. It seems like you have to take a lot though. I have a bottle of 100mg and one of 300mg. I take one every now and then. Please let me know how it works for you. I'm also glad you are getting off of the patch. I was just reading some not so good stories about it on another health board and I was thinking about you. Have a nice night.
Linda

[Katie]

Oh CL, that explains a lot. I'm so glad that you've gotten to the bottom of this, and yes mam, you sure do know your body

[ajj1001]

Hope you are feeling better. I am on Gabapentin. I need to take quite a large dose but when you get over the initial effects of it I have found it to be quite good. I take 4 x 300mg a day and it damps down alot of my nerve pain. You need to take it regularly and whatever you feel like as it needs a stable level in your blood to work. The main side effects it has on me is problems remembering things and a slight delay in speech. Nothing huge and if I can't remember stuff then I can always blame it on the tablets.

[daveinaustin]

Glad to hear the doctors figured out the root cause. You definitely know your body! Fortunately, you never back down when you know something is wrong.

Good luck,

-Dave

[Justin]

Hi CL,

I'm glad that you have this "figured out" now. I bet you are relieved--shortness of breath can be very scary, especially with your history of PEs.

Gabapentin (Neurotin) is helpful for many patients. Many patients report a fogginess and cognitive delay. Good luck tapering off of the Fentanyl and I hope you'll start to get relief from the ablation.

[KBear]

CL- I am so glad they (really you) figured out what was wrong with you. That sounds really scary and would have had me freaking out. We definitely know our own bodies and while I agree doctors have the degrees for a reason, they are not inside our bodies and don't feel what we feel. We also have those gut feelings when something isn't quite right, as mothers (or fathers) we have them for our children. When mine were babies, we would sometimes be in the dr's office 2 or 3 times a week. My hubby thought I was nuts for taking them over and over, but I just knew when something was wrong and I was NEVER wrong, every single time I took them in, there was something wrong! It is amazing how our 'gut feelings' work; but that's why we have them.

I have heard the same thing about nerve ablation, that they can take awhile to take full effect. I guess because it takes time for the nerve to die? Just a guess, I really don't know.

I am on Lyrica, which I believe is the same as neurontin, just a different name (sonmeone correct me if I am wrong please). I used to think it wasn't helping me; but everytime I get off of it, I will have increased pain within weeks of quitting it. Also, like Allison said, you need to take it everyday as prescribed, to keep a stable level in your body for it to work correctly. This is a medication they also use for diabetic pain, cancer nerve pain (my brother is also on it for nerve pain that was caused by damage from chemo), and nerve pain from shingles (I had another family member that was on it for this).

I'm praying for lots of better days for you, easy fentanyl tapering and that they give you effective pain relief in the interm.