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Freaked 😲

Jun 03, 2015 5:16 PM

I had an appt at the pulmonary doc today. It takes 45 minutes to drive one way and 15 minutes to walk from the parking deck to their office. By the time I got there I was tired. The nurse called me back and did the or-check, and as she taking my bp she asked, "Whats wrong with your hand?". I looked down and saw it trembling worse than normal and replied, " They don't know what's causing these tremors." She then asked if I had seen a neurologist, to which I informed her I'd been referred to Mayo but was waiting for the appt. She clicked her head at me and said, "I hope it's soon," then left the room. Gee, that didn't bother me. 😕

After a few more minutes the doc came in and proceeded to ask questions. I noticed he did not take his eyes of my hand except to make notations. He asked about the tremors and I told him the same thing I told the nurse. When we were leaving the room I told him once i get home and rest awhile the tremors would calm down some but having to grasp things aggravates it. He stated, "You take care of yourself," as he placed his hand on my shoulder a few seconds. (Not his normal way). OK I'm almost certain he and the nurse were freakishly disturbed by the tremors, which just happened to be a worse day for me. 😱

So I drove back home and got out of the car to go in the house. My legs have been feeling slightly rubbery when I move. As I started walking I realized they not only felt rubbery but also weak and disconnected from my body. I had to prop against the house as I unlocked the door, and once I got inside I'm thinking, "What the heck is wrong with my legs?". I walked across our galley style kitchen, about 22' and thought," My gait is messed up, I'm wobbly. " The best way to describe what I felt my walking was like is a marionette. 😲 Is this crap going into my legs now? Ugh! 😵. Will I even walking on own when Mayo sees me? 😭🙏🌼

Jun 03, 2015 6:08 PM

I wish I had some words of wisdom for you, but I'm fresh out on this one. I'm sending positive healing thoughts your way though. I hope someone can give you answers real soon. Sometimes I think the waiting is worse than anything else.

Jun 03, 2015 8:30 PM

Thanks Scaryann. My hubby got home and when he saw me walking he said he's worried. We are supper and went to the store. I rode a cart but the whole time my hand was trembling horribly. Today my tremors have not calmed one bit since they started, which is unusual. Every day for over a week when I get out of bed or stand from a sitting position, I have to wait to get blood for but also to make sure they aren't going to buckle. Like "sea legs" when you get off a boat.

I've had a sharp pain type headache twice today and once yesterday, just behind the left eye at the temple. At one time I wondered if I'd had a stroke, but then figured there's no way because it didn't make sense. I'm just praying and trusting God to carry me through until Mayo calls... And praying they call sooner than later. Honestly the tremors don't bother me. The looks on others faces get to me though... Big time! 🙏🌼

Jun 04, 2015 10:09 AM

Flappy so can you contact Mayo and let them know how quickly it is worsening and plead for an appt sooner?

Jun 04, 2015 1:30 PM

I wish I could OregonHS! Unfortunately I can't and the neurologist, after reading my email didn't seem to think it would get me in faster. The way he explained it: everyone going there is going because all others roads are dead ends. And it's a first come first serve, waiting list basis. There's no date available until after June and I was put on a waiting list. 😔

Jul 08, 2015 1:04 PM

Flappsy, I can't even imagine the kind of fear you must have felt. That nurse really was insensitive with what she said and I think I would have asked her to elaborate. I also would have questioned the doctor about his treatment. You, my friend, are a strong lady and although you're going through way too much, I KNOW that by the grace of God, you WILL be walking when you get to Mayo. I wish I was there so I could give you a reassuring gentle hug but I'll just have to do it here. {{{{{Hugs}}}}}. You're always in my thoughts and prayers, Flappsy. I wish you nothing but the very best. Hang onto your faith.. God will get you through. 💕🙏🏻🌺

Jul 08, 2015 5:15 PM

OregonHS, I've got an appt next week. I've been resting 90% of every day until this week. I've left most of the driving to my hubby for three months which has been no easy task... He tailgates and brakes last minute! 😨 Lol. But it's helped reduce the tremors a good bit. Today I had to drive a total of three hours going from doc to doc office picking up records. I'm beat and my hands is cramped up from all the tremors, and still trembling. While waiting at one office I had to stand to wait and tell them who I was. My left hand and arm began to tremble on the cane. I had to sit down because I wasn't sure my legs wouldn't start next. Thank God I made it home safe. But the bottom of my left foot is tingling, odd.

AlwayZ, your virtual hugs are much appreciated. I have some apprehension that Mayo won't find the cause either and I'll just keep rising the ferris wheel up & down, round & round. I've been fighting with dizziness and being thrown off balance for several weeks, if I bend over or turn around. As you said, Good is my strength and He will are me through. And it helps knowing all of you are here for support. Thanks everyone, all my newfound friends! 🙏🌼

Jul 08, 2015 5:56 PM

Oh Flappys, I have good vibes that Mayo will help you.... If they don't have an immediate answer I feel like they will dig for it. I only hope they do so quickly. My thoughts, prayers and energy are with you. 💐

Jul 08, 2015 7:00 PM

Thanks OregonHS. I think it's just nerves because so many docs have stopped treating me just this year, I think I'm afraid of hearing, "Well there's nothing we can do for you" again. I keep having to kick myself into believing and thinking positively. I'm sure they will dig deeper than any of the others.

I know there are specific test for MS and vertigo that I've not yet had. But after reading about them I dread them. They're called evoked potentials. I've not been able to throw up since being intubated in 2010, but they just might cause it testing my dizziness and imbalance. The treadmill I'm walking on, at a speedy 1 mph...Lol, it has bars to hold in front or on the sides. Out of curiosity I've tested myself by letting go, and it never fails... I teeter to the right. I think I could live with the tremors easier than the imbalance and dizzy spells. I've been behind the wheel of the car and just turned my head left and suddenly the streets swirl. I've had to let my hubby drive more and more since December. And I'm scared they're going to tell me I can no longer had a license, which will only burden my hubby more.

Bless him, he's napping now. Besides working he's run all over town two days getting most of my records. I told him we are staying at an oceanfront hotel so even if I can't go outside I can sit on the balcony and watch him enjoy it! Here's picked up shells from every beach vacation and we have then in our ocean themed bedroom. 🌊 🐚 Lol, the other room is our mountain from, handmade quilt and all! 🐻🌲 I so miss our vacations. We're making this trip to Mayo a short of mini one. I have my cane and my rollator walker. And I found out there are beach wheelchairs for rent, if needed. I just hope it's the activities of today that has me hurting all over and not an oncoming flare.

I've been in your shoes with the teenage daughter. It's so hard between 15-24. Then when they get out on their own you look in the mirror and go, "when did I age!". Hugs and prayers for you! May you be blessed with less crap we went through!!! 🙏🌼

Jul 08, 2015 10:56 PM

Flappsy I am so sorry that you are having to go thru all of this. I wish I could do something to help out. That nurse and Dr needs to be more sensitive to people.I know your appt., can't get here soon enough for you and like Alwayz and Oregon said that they will dig until they find the cause. Stay strong like the lady I have come to call my friend can do. Love and hugs hope you have a good night.

Jul 09, 2015 6:37 AM

God's keeping me strong Weezie, Him and all of you! So many of you are like old friends that have been around a long time, or very close sisters. I so wish we could all meet face to face. Hope you are getting some rest yourself. Take care and Good bless yours and everyone's day today! 🙏🌼

Jul 09, 2015 7:05 AM

I'm so sorry Flappyslady. Keep us posted. Sending hugs and good thoughts.

Jul 09, 2015 8:13 AM

Sending positive healing prayers

Jul 09, 2015 12:52 PM

Flappsy, one day there will be a way to all see one another and exchange numbers, etc.. I feel a very close bond, same as you do. Like sisters or old comfy friends that you know will have your back when you need them. Hope you're having a peaceful and less pain and stress day. 💕

Jul 09, 2015 6:55 PM

After months of "nothing we can do" the Ortho doc referred me to PT for an evaluation. I saw them today. The young lady said my strength is bad all over but definitely worse on the right. She had me lie down and try to lift my foot & leg up. The left needs some work but the right didn't make it half an inch! Same results with the right arm & hand. Then she watched me walk but didn't make any comment, just made notes. Next came some movements to treat my balance and dizziness issues. Holy cow! I thought I was going to get sick several times! Good thing I hadn't just ate lunch. When she finished it all she asked had they tested me for Parkinson's disease and I told her no, they were looking at MS. Then she asked if I had any ear problems and I told her I'd had tinnitus and vertigo since 2007, and had been sent to an ENT to treat me but he didn't have the equipment to do so and in his opinion "it wasn't necessary." She shook her head in disbelief and said she suspect twoPCPings; meneires disease or a vestibular abnormality. I told her my pcp suspected meneires years ago but the ENT doc assured him it wasn't (without tests). I now have damage to the cilia hairs not responding to stimuli and hearing loss to the point of just needing hearing aids. I won't get them because the insurance only covers 5 years apart, and chances are my hearing will worsen. I just feel so ho-hum right now. For you non southerners that's the same as blah, glum, not sad but a really don't care feeling, not one way or the other. I am tired though. I did house work and paid bills and cookies, three hours straight. My legs are tingling and my ears are humming and squealing at the same time (tinnitus). 🙏🌼

Jul 09, 2015 8:51 PM

Oh Flappys! I am still optimistic that Mayo won't give up and maybe the pt notes will help? !
I have nasty tinnitus in the right ear ever since I had mastoiditis a few years back ( not mastitis as the brilliant doctor put in his notes!!!) and the took a scalpel and sliced through my ear drum. I then had to hold my nose and blow several times a day to keep the hole open. It whistled like a tea pot and could be heard clear across the house. Great party trick though! Lol. We are all here pulling for you and sending prayers, mojo, vibes, blessings, songs, hugs, kisses, noogies, and a variety of other positive and heartfelt supports. Keep on keeping on, you got this!!😜😘😝😎

Jul 09, 2015 10:42 PM

Flappsy, this is just absolutely incredible that you have to go through all of this crap. I really believe that Mayo will be able to help you. They don't have the reputation they have and waiting lists to get an appointment because they give up on people. I feel that with the notes from p/t along with your other records will give them a really complete picture along with the examination they will do and any tests they perform and they will keep digging until they find an answer to what is happening. I'm sorry you're feeling hum drum. That sucks and doesn't make for a pleasant night. God will help you through this (and so will your friends here, myself included). I will continue to pray for you that you get the answers you need to feel better and get back to a better quality of life. Best wishes and I hope you have a restful sleep with little or no pain so you can get up in the morning rested and feeling better. Sweet Dreams, Flappsy. 💕🙏🏻🌺

Jul 10, 2015 1:50 AM

Awake from the achy cramping muscles and tingling shooting nerve pain. I've taken the pain meds and 2 muscle relaxers since 6pm and I can't sleep. I've tried gentle stretches. When one nerve calms down another one starts throbbing or shooting across areas of my body. Three hours on my feet... Stupid me! I don't think I'll be strolling the beach.😖 it's going to be a long night tonight. And as sad as it is to think about it, I know several of you are awake for the very same reason. Night time pain is the worst! 🙏🌼

Jul 10, 2015 2:13 AM

Hi Flappsy.... I'm so sorry you're up with such pain. I am up myself for the same reason. After this day of dealing with death, wills, making funeral arrangements, etc, my mess didn't help me at all today. As exhausted as I am, I keep closing my eyes and waking back up every 10 minutes or so. I sure can sympathize with you, Flappsy... It does make for a very long night when you feel like you're the only one in the world who is up and everyone else is sleeping. I hope you can close your eyes soon and get some rest. I'll be praying for you.💕🙏🏻🌺

Jul 10, 2015 1:25 PM

Have you been tested for ms?

Jul 10, 2015 9:28 PM

Sam22, My neurologist and Ortho both think I have it. But according to them symptoms can come and go, so it can take years before the bonafide spine signs of brain signs show up. I had the lumbar puncture, and there were some irregularities but not consistent for it to be diagnosed yet. Neurologist is sending me to Mayo next week. Hopefully they will get to the root cause of all of the tremors, dizziness, imbalance & dementia. 🙏🌼

Jul 11, 2015 3:18 AM

Flappylady81 you are being incredibly strong with all this red tape if so called professional diagnosis. The trouble is nowadays the Dr each has a part of you to diagnose but they will not cross over jnto another body part just in case they tread on another consultants toes or profession. When are Dr's going to treat us as a whole entity and individual person and not just piece of puzzle? That's my road along the medical maze anyway 🐢
Rest up Flappy altho sometimes you want the Dr's to see you at your worst otherwise they have that puzzled look about them thinking where can I send her?? Hope you are getting answers and prob MRI as that's a test for MS. X

Jul 11, 2015 5:06 AM

Before I was diagnosed with hEDS the doctors were checking me for MS. It runs heavily on my Mom's side of the family. My Mom's Mom had it, Mom's brother, and a cousin had it. It wasn't until after I was diagnosed with hEDS that I was reading where many people diagnosed with MS turned out to have EDS of some form.

When they were checking for MS for me they did a LOT of blood work (to rule out Lyme, I guess) and an MRI with contrast. Thankfully everything came back negative for Lyme and MS, although the more I learn about hEDS (even though it explains everything) the less I want this diagnosis either. LOL

Good luck finding the answers you need.

Jul 11, 2015 8:47 AM

Thanks Mumof3boys & Scaryann! I live in a big town, but most of my docs have been just across the country line in a small city. It has well trained doctors for the most part, but every time I need a highly trained specialist I've had to go 2-4 hours away to big cities.

My neurologist, after getting the lumbar puncture test, looked at me and my hubby and took my hand and said, "There definitely something going on but it's beyond my abilities. We do not have the means for intense studies. We need a fresh set of eyes where further tests can be done.". I admire him for his honesty and not saying, " well there's nothing I can do for you " then dismissing me. He explained he couldn't diagnosed MS but he also can't rule it out. He said MS takes years to cause visible damage to the brain and spine, but my symptoms are also shared by many different diagnoses. He said Mayo has lots of tests they can run.

I'm trying to stay strong and courageous, but the closer it gets my stomach feels like knots! Whatever it is, God is beside me, so I won't face it alone. From what I've read on all the possibilities, EDS included, I'm not sure which would be the least detrimental. Having 2 docs tell me it may not be safe for me to drive it I keep having dizziness out of nowhere, that scares me. As good as my hubby is, when he has to do extra for me or his mom in the home, anger shows (not at us but in general). My kids work and have their own families. My family is all out of town. I really appreciate all the prayers, support and e-hugs! 🙏🌼

Jul 11, 2015 11:14 AM

As alway flappyLady Your iN my daily prayers and I'm sorry for all that you are going Thursday I wish I could just take your pains away just for a day so you could get some good rest

Should say thu

Jul 11, 2015 10:50 PM

Thanks Eddieray. I appreciate your offer, but I'd hate to know someone else was suffering so I could have a pain free day. I can't really tell because of the stress of trying to get everything done before Mayo, so I've been moving around and driving more, hence more pain and tightness in the mornings. But I think the Plaquenil is helping some with the fatigue I had. It's lessened a lot. Hope that you and everyone has a blessed night of restful sleep! 🙏🌼

Jul 12, 2015 12:05 PM

Prsying, they can find out what problem is. Did your doctor test you for for parkasins? Reason I ask is 2 of my aunts have it and you match the symptoms. Prayers for a really fast appointment at the MAYO clinic and and true diagnosis. Hugs n love. 😘

Jul 12, 2015 5:26 PM

Moparmom, thanks! No test for Parkinson's, only Lymes and MS. I expect Mayo will put me through the grinder. Because driving makes my tremors worse I am going to drive from the hotel to the hospital clinic.

My hubby got new tires yesterday. He told the guy we needed good times for comfort so the guy asked why. He told him about my health and how car rides make me hurt worse. The guy went and got a set of new tires just a little bigger and wider than my originals. He told my hubby they're give more cushion for rough roads. He was right, we can tell a good enough difference. My car had 53000 miles on original this and he said chunks had come off from dry rot making it ride worse. Now if I could get a more cushioned seat that didn't put my knees higher than my hips! Lol 🙏🌼

Jul 12, 2015 7:01 PM

Flappy,
Every time I take a drive, I get a ton of pillowsof all shapes and sizes.
I also need my knees to be lower than my hips, which usually requires my head to be against the ceiling.
I start with a memory foam pillow filed in half at the back, then 2 normal pillows on top.
I then prop a blanket against my upper back and shoulder blades.
I'll also have body pillows to wrap around my feet so they don't get cold.
It works pretty well, except for potholes.
God luck!

Jul 12, 2015 9:20 PM

Ferretbandit, I'm claustrophobic.. That many pillows would have me fighting to be free! Lol😉. But thanks for the suggestion. I think I will take two, one is memory foam. Oh, I also have a neck roll one, so that's 3. I think I can handle that.

You all know what flares mean... I think my body is getting prepared for one. I've been real tired (to a nap), my joints and muscles are stiff and hurt. Then later today i started having shooting pain into my big toe on both feet. My knuckles on my hands feel stiffer than usual. I hope I'm wrong but then on the upside, Mayo gets to see it live! Lol.

Goodnight and sweet blessings to all! 🙏🌼

Jul 12, 2015 9:24 PM

I read ppl comments on here and try some of things ppl have put on here to try to help with the pain but I can't get my pain to let up just a little I have told my doctors over and over again how hard it is to walk my hands hurt all of the time they swelling all day I'm always dropping stuff since I had to have surgery on my hand and on my shoulder the pain in them simed to have doubled all they do is change my meds but I just don't feel like they are listen to me I haven't been able to work in four years I just stay in pain they have told me that I have lupus and AnA and my vit D is low tell to get some vit D over and try to get in the sun more but yet sun not good for lupus so on Thursday last I was outside lay out in the pool w my grandkids and a good friend and that day was a night mare I had seizures right in front of my grandkids and thank god some was there to help but since that day I have just gave up I feel like this is never going to get better and I don't see my lasting much longer like this I can't take the pain the depression and the crying all day and night I just want it all to end

Jul 13, 2015 7:21 AM

Dee6569, I'm so sorry you are having such a very rough time. You mentioning your shoulder and hand pain made me remember an article I came across recently, while trying to help my daughter with her shoulder pain. Go to www.medicinenet.com and search Thoracic Outlet Syndrome (TOS). Read the article and see if your symptoms are similar, if so ask your doc if this could be what's causing so much pain there.

You also mentioned your ANA & D vitamin levels. My D vitamin level has been low for 8 years but my doc only told me to take a supplement 2 years ago. Before that he'd say "get more sun." I have to be careful in the sun because 1) I burn easily & 2) several of my meds say avoid being in direct sunlight. I was trying to go out early in the mornings, by 10am, and late, after 4:30 pm. Only we're having 90-100 temps with high humidity and it makes it hard to breathe with my asthma. I have been taking a D3 vitamin, 2000 IUs daily for months now, and a multivitamin. And most days I take magnesium and tumeric, supplements, others on here suggested. I do believe all this is helping some, not a miraculous amount. But as we all know any amount of improvement is good.

As for the ANA, I don't know a lot about it. But the way my doc explained it to me is, anyone with inflammation is going to have abnormal ANA levels, especially people with fibromyalgia, lupus, thyroid issues, and Sjogrens. I have the fibromyalgia, hypothyroidism and sjogrens, and I don't really give my ANA levels much thought. Others on here may know more on this.

What medicine are you on for the lupus? I just started on Plaquenil for the sjogrens and my doc said it would take a good six months to see a leveled off improvement, in other words the best improvement possible. I just started my second Rx of it and I can honestly say I can tell a big difference. I still hurt but it's not the intense deep tissue pain like before. My rheumy doc said that she uses Plaquenil for lupus and RA too. If you're not on it maybe your doc would give it a try.

I hope you can get a method going that works best to reduce pain for you. I'll be praying for you. It's very hard being at the point of giving up. I was there last year but by the grace of God I was under some very good docs who saw what was happening and helped get me under the rheumy doc. I also have a good pain specialist for my spine. You are never alone. Many are here and have been at the point you are. Hang on to the support and encouragement from us all and we will help you get through this! (((Hugs))) & prayers for you! 🙏🌼

Jul 13, 2015 7:47 AM

Thank you flappyslady81 I looked that up and will bring up to my doctor I see one on the 24 of this and I see the RA next month I just would hope they would come up with something to help some they increased my meds for fibromyalgia it helps some but it hurts my hands to even text on my phone or even type on a computer it hurts my hand if I fill out paper work I have also told my doctors that it hurts to walk the bottom of my feet feel like they are going to sleep all the time like when I go to the store I have PTSD so it's hard for me to be around ppl but when I do get to the store it hurts to walk to the and just gets worst while I'm walking I just know I can't do half of the stuff I use to be able to do my weight gain has went though the roof i have never been as big as I am I have tried diet pills over the counter

Jul 13, 2015 5:52 PM

Dee6569, hopefully they will get this figured out. My weight has ballooned too, and I think it's the meds. When I go out to large stores I use motorized carte if they have them. I'll keep you in my prayers. 🙏🌼

Jul 13, 2015 6:03 PM

I just feel I'm to young to be like this but thank u for all ur help and listen to me

Jul 15, 2015 2:49 PM

Tdy is not a good day and I can't get the doctor office to call me back my heart feels like is beating out of my chest having a hard time breathing and when I get up I feel like I'm going to pass out just not a good day

Jul 15, 2015 3:13 PM

Dee6569, you need to call someone to take you to the ER, or call for one! Praying for you! 🙏🌼

Jul 15, 2015 5:53 PM

Dee6569, I would get to either an urgent care center or the ER because you need to find out what's happening to you. I pray that it's something easily remedied. I'll be thinking of you.

Jul 15, 2015 9:32 PM

Dee get to the er better safe that s sorry

Jul 16, 2015 11:36 AM

I want to thank everyone for the advice I went to the er and I was having a reaction to one of my meds is was very scary but feeling a little better tdy

Jul 16, 2015 12:11 PM

Dee6569 it's always better to era on the side of caution than not too. I know that it's the pits to have to go to the ER so much. I feel like they think the only thing I'm after pain meds. The last time I went to the ER I was having tingling and numbness in my left arm,hand and finger, and leg and foot dragging when walked. The PA saw I was in distress and I told him I'm not here for pain meds I'm here to find out what was happening to me. But the ER Dr told him they couldn't give me any more pain because I was already on so much. I was so mad at that Dr. I told him that's not why I'm here I 'm here because of the tingling, in my left arm,hand,and fingers,leg and dragging my left foot, and my heart felt like it was beating out of my chest . I don't think it's fair but we get pigeon holed as druggies, when we are not.

Jul 16, 2015 1:48 PM

I second that Weezie!!!! I was pigeonholed as a drugseeker and mostly ignored for hours in the ER, turned out to be pancreatitis! Which I keep having recurrent bouts with and the same stupid hesitant reaction in the hospital every time, even when my Dr. called ahead to say I was coming and why! Drives me crazy! I overheard the nurse discussing my chart and I'm marked as a drug seeker and former opiate abuser. Pissed me off royally! I've never abused my meds or the ER. I just have endometriosis, fibromyalgia, interstitial cystitis, chronic migraines, and more...I just don't go anymore, which I know is wrong, but unless I'm unconscious or missing a body part I'm not dealing with the neglect and disdain for now.

Jul 16, 2015 3:34 PM

You guys! How the medical community treats us is horrible! If THEY had pain they wouldn't think of themselves as drug seekers. I just want to say I'm here and I'm sending warmth and good wishes your way. I get it. I'm sorry.

Jul 16, 2015 10:08 PM

I know how u guys feel the er doctor was like they have u on to much meds but when a doctor gives u the meds what do u say I'm on to much u believe the doctor knows what he is doing

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