Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

On the road, hopefully to a healthy dx & solution

Jul 14, 2015 2:23 PM

We've been on the road since early morn and still have 2 hours to go. I drove 1 1/2 hours until my hands were stiff and cramping, and my legs to. We've made three stops and each time I have to stand up and be still to let the blood flow to my feet. My calves are swollen and throbbing. I'll be glad when we get to Mayo. And hope and pray I can take a moonlight stroll on the beach, even if it's a short one! I can't get in the sun because of my meds. Besides that it will be cooler after the sun goes down. Praying everyone is having a tolerable day or even better! πŸ™πŸŒΌ

Jul 14, 2015 5:05 PM

Flappsy, in praying for an easy balance of the drive. I will be praying for you to get the help you need and deserve. And, if nothing else, rest and take that moonlit stroll on the beach. I'm sure you'll never regret doing it. Praying for you my friend. πŸ’•πŸ™πŸ»πŸŒ»

Jul 14, 2015 5:16 PM

Flappsy I am praying that you will be able to take that walk on the beach tonight. Maybe you should try and streach out you legs in the back seat for a while. I am so hopeful that the Dr.s, there will be able to give you a diagnosis for the trembling in your hands and legs. I know that you are worried about what you will find out. We are asking in the Lord's name that they will be able to tell you what is going on and that there will be a treatment that they can impliment to lessen the tremers. I pray that you have a restful and as pain free night as possible. Sending you hugs and love.

Jul 14, 2015 8:09 PM

Here's hoping things can be explained and hopefully made better! I'll keep you in my thoughts.

Jul 14, 2015 8:54 PM

Thanks ladies! We didn't get to stroll the beach under moonlight... Clouds & rain. But we did walk a little bit before it became stormy. The tide was coming in when we walked. Then we went down to the pool... Cold!😨 I realized real quick that I can't swim anymore because of the pain to the arch of my back. But I floated on my back and it was so relaxing. We stayed in about 10-15 minutes and I got tired so we sat in the hot tub 5 more minutes to warm up. Omg...I needed one at home!!! Got up to the room, cleaned up and I'm ready for bed. Signals aren't very good here... On and off a lot. Goodnight to all with blessings for peaceful sleep! 😴 Our day starts early in the AM. πŸ™πŸŒΌ

Jul 14, 2015 10:11 PM

Flappsy, I pray your day goes well and smoothly tomorrow. Please know that you have several people here that are praying for you and are waiting to hear whatever news (hopefully good) that you have for us. Sending you hugs and hope your night is peaceful, restful and you wake recharged and have minimal pain. You're in my thoughts and prayers πŸ’•πŸ™πŸ»πŸŒ»

Jul 15, 2015 7:46 AM

Got up this am with dizziness and tremors... They'll get me in prime symptoms!

Jul 15, 2015 8:05 AM

Not happy you woke up to this, but I am happy they get to see what you are going through. Hope they can figure it out and help to fix it!

Here's to more time in that hot tub too! I've wanted to try one forever, but I doubt I will ever get the chance. R doesn't like anything hot, he like the cold, but not the snow and ice. LOL

Good luck and cyber hugs,

Jul 15, 2015 8:08 AM

Thanks Scaryann. The pool wasn't too cold and it honestly felt good, but the hot tub was awesome. Ttyl. πŸ™πŸŒΌ

Jul 15, 2015 12:52 PM

Praying for you Flappsy!! πŸ’•πŸ™πŸ»πŸŒ»

Jul 15, 2015 3:29 PM

Not a dead end but a double "U" turn is in the works. The doc put me through a lot of balance and walking maneuvers today, and ran blood tests. He has ordered an ENT hearing & vestibular function test, an EMG of my arm & hands for the tremors, and a more in depth neuro-psychologist exam (3+ hours) to see if he can find what explains my symptoms. He said he didn't want to speculate or guess at the cause, and he didn't want to we any of my doctors notes because he "wants a clear thought without preconceived ideas, in order to make his diagnosis(es).". He got real good visual of my tremors and jello legs, and my forgetfulness and gloves up thought process.

In order to have all the appts as close together as possible, so we aren't making multiple expensive travels, we will go home tomorrow and come back in September. πŸ™πŸŒΌ

Jul 15, 2015 4:26 PM

Fantastic Flappsy!!! How awesome that he didn't want the records so he had no preconceived notions and he could make his own diagnosis(es) without it. I glad for you. It's also great that he's going to see you again tomorrow. I'm cautiously optimistic for you, Flappsy. I pray that all goes well and you get answers sooner.. Hang in there, Flappsy!! It doesn't seem like it, but I just know. God got you there and connected with this doctor who is willing to start off going the extra mile!!!! You're in my prayersπŸ’•πŸ™πŸ»πŸŒ»

Jul 15, 2015 4:26 PM

Wow, so glad he is listening! I know it's hard to wait for answers, but he sounds great. It's also great that they are doing the best they can to get everything done at the same time to save you from having multiple trips back and forth. I'm so happy they are going to try to find answers instead of just brushing you off. Will continue to keep you in my thoughts and sending those positive healing vibes. :)

Jul 15, 2015 10:53 PM

Sounds awesome he's starting fresh and really looking into every possibility! Too bad about waiting until September, but at least you know someone is working on it. I was just told today I get "too many migraines to try that therapy." Ha! Too much pain to try to fix! Sometimes I feel the process is just ridiculous. I am keeping you in my thoughts. I am hoping for answers for you.

Jul 16, 2015 12:23 AM

Flappsy I am so happy that this Doc is wanting to start from scratch, and try and figure out what is happening to you. I' m glad that they are trying to get as much done as possible to help save y'all from having to make too many trips. I hate that you have to wait until September to find out anything. Do they have a Ronald McDonald House there? If they do y'all may could stay longer In September. Sending you hugs and love hope you can have a restful and pain free night . Keeping you in my prayers.

Jul 16, 2015 8:24 AM

Hey Flappy, I am really happy that you are getting a fresh approach to your medical condition. It is nice the doctor does not want to be influenced by old notes and by test that may be done at substandard levels. You know the test will be extremely accurate at Mayo. It will nice for him to consider what has been done for you over the years but after he comes to his own opinion. It must be nice to go somewhere where you know you are getting top notch care. I wish it was that way every where. It should be. There really isn't any reason for it not to be. If your not a good doctor, they should let you be one. For people like us, it makes our lives very undealable and them very unreasonable. I wish there was a report card system that would overlook little mistakes but would wean out the doctors that have complicated people's lives. Just a wish

Jul 16, 2015 1:29 PM

Wishing you all the best. Hope you get some answers. Keep us all posted.

Jul 16, 2015 3:40 PM

Any updates Flappyslady?

Jul 16, 2015 10:25 PM

Thanks everyone! We made it home after coming through some awful storms today. The next nine weeks will be hard. But I feel so much better I'm under a truly compassionate and competent doctor. I forgot this but my hubby said that the nurse told us the doctor prefers other doctors to do the actual tests, instead of techs doing the test and a doc interpreting. I jokingly asked my hubby what would he'd do if they told us I'm losing my mind like Alzheimer's or something... He didn't find it funny.

I know one thing for sure, others on here have the opinion I have Raynaud's, and I believe you're all right. When we got back to the hotel yesterday we got in the pool. Within 1-2 minutes my teeth were chattering, , and at about 5 minutes I told my hubby I needed to get in the hot tub, that my bones hurt to their core so bad I was getting stiff. He helped me to the hot tub and again the extreme temp changes was hurting me. Within minutes we got our and went to our room where I showered and dried my hair, put on my pj's and climbed in bed. Overnight I ended up with the down comforter covering me head to toe... In FL 90 degree weather! Today I've been achy and stiff. πŸ™πŸŒΌ

Jul 17, 2015 8:45 AM

Flappsy, it makes me very happy to hear that you are under a compassionate and competent doctor. I agree with him that it is better for a doctor to do a test and a doctor to interpret the diagnosis. I agree that it sounds like you have Raynaud's with the symptoms you display. I'm sorry you're so achy. I end up under a winter quilt often and then am pulling it off with the menopausal hot flashes. When I do, I get a chill and have to pull it back up. Then, next thing you know, I'm sweating again!! (I don't know what to do with myself when I get hot and cold at the same time!!!)

Jul 17, 2015 9:02 AM

AlwayZ, menopause is bad enough, but the heat & humidity makes it worse. I'm feeling much better this morning. Having slept in our own bed I rested better. As the saying goes, "there's no place like home!" πŸ™πŸŒΌ

Jul 17, 2015 9:33 AM

That's for sure, Flappsy!!! I've spent the last three days as you know, at viewings and a funeral. I don't know how I managed all the in and out of the car, driving, being on my feet, taking care of my best friend and her family. I'm in a lot of pain from skipping meds and it will take a couple of days to get right again. (As right as I can be anyway.. LOL!!!!) I'm just glad I was able to be helpful. The church was beautiful, on the way out Father put his hands on me and blessed me after I thanked him for a beautiful mass. Guess I'm good for a while. (Although 1/2 mile away from the church, someone tried to cut me off in the procession and I was cursing like a sailor!!) so much for my blessing!! LOL!! I did apologize for my mouth. I'm glad your home, Flappsy and it sound like you went to the right place. As always you're in my prayers πŸ’•πŸ™πŸ»πŸŒ»

Jul 18, 2015 10:52 AM

Flappy, I'm glad you're getting a new perspective about diagnosing yiu, I truly hope you are able to name and treat whatever ' s going on.

Jul 18, 2015 11:33 AM

Thanks Faerygrl. We do to. The balance test was something I've never been put through before. He stood behind me and put various helping backwards pressure on my upper arms, 1-to see how easily I was thrown off balance and 2-see if/how quickly my body reacted to try and catch/maintain my balance. I think I failed from the look of concern my hubby saw on his face.

When I return in September I'll be put in a chair that moves at their control, and stand on a moving floor (similar to a fun house). Not looking forward to it!

Sweetiepie, I won't know anything until I return for tests in September.

Thanks again everyone!! πŸ™πŸŒΌ

Ready to start relieving your pain?

Join Community