Noticing Slow But Steady Improvement

[janiedelite]

I've had POTS for 4 years, and I never thought I would get better. I've been noticing steady improvement all spring, but wanted to wait until the summer was here to actually document my improvement since the heat is such a trigger for me. I think sometimes folks who are on this site for encouragement while they are ill stop posting once they start feeling better. I'm not 100% yet, but will keep you all informed so that some of you who had the same triggers might also have hope. Here's my timeline of POTS events:

6/06: I contracted mono at the age of 32. It took a couple of months, but I was able to return to my job as a full-time registered nurse.

9/06: My husband and I were t-boned in a bad car accident. I was off of work for a week, but continued with physical therapy for back pain.

10/06: I had my first POTS episode while at work. It was handy because as I felt like I was passing out, I put myself on a heart monitor . I started going to docs for my unrelenting tachycardia, chest pain and weakness but got no answers. In the meantime, my back and hip pain was worsening.

12/06: I started having strange itchy, red bumps on my toes (which I found out later was a kind of frostbite).

6/07: I stopped working to have my first hip surgery (still related to injuries from the car accident). I'd given up on getting any answers for my tachycardia. The hip pain was so severe that I'd been using a cane since 2/07 and finally went on bedrest for a month prior to surgery because any weight-bearing was so painful. During surgery, they found a dented femur and torn cartilage which the doc was able to repair (none of this showed up on the MRI's, bone scans or xrays for some reason).

8/07: I'm still unable to put weight on this hip. Physical therapy wasn't helping. An MRI showed that the cartilage in my hip was dying and the doc schedules another surgery to debride the cartilage in 1/08. I'm devastated that I still can't return to work.

12/07: The itchy, red bumps are back with a vengeance and I can't sleep through the itchy burning pain. I start seeing docs for this mysterious ailment.

1/08: The second surgery revealed a ruptured ligament in my hip that was missed the first time. I'm actually able to bear weight on my hip right after surgery with minimal pain, but I still need physical therapy through 10/08 because of lingering hip pain.

4/08: A biopsy of the bumps find them to be frostbite. I'm sent to a rheumatologist who can't find a cause. The bumps stop once warm weather comes.

6/08: On our first 100+ degree weekend, I start having burning in the soles of my feet that is very distressing. Within a week, it spreads to my hands, face, mouth, then my whole body. I become debilitated with progressive fatigue, odd fevers, more chest pain, nausea, etc. I start seeing neurologists, cardiologists, cancer docs, rheumatologists, podiatrists, dermatologists, etc.... An EP cardio diagnoses me with POTS in 10/08. He prescribes midodrine which brings back to frostbite, then florinef which causes worse chest pain and horrible BP spikes. I finally get a neuro who sends me to Mayo.

2/09: I'm in a wheelchair most of the time now. My hubby flies with me to Mayo and wheels me to all the tests. I get a hyperadrenergic POTS and small fiber neuropathy diagnosis. I end up trying the meds the Mayo doc recommends but don't respond well. However, I was advised to gradually push myself and increase being upright. I started by just walking down the block and back, and within 5 months was able to walk 1-2 miles. Still, the POTS symptoms keep me in bed much of the day. Any activity is painful.

1/10: We have a roof leak that leads to us tearing out a wall of our house. We find an extensive mold infestation and it was immediately evident that there had been previous repairs made to this same area for water damage, but none of that was disclosed by the previous homeowner when I bought the house in 2005. None of this is covered by insurance. We end up tearing out one side of the house, gutting about 25% of the house, replacing the roof, all the siding, and spending about $30,000. We hired mold forensics who found staccybotrys, clostridium, and basically any toxic mold ever known to man.

2/10: We evacuated our home once the mold was found and lived with my parents (thanks mom and dad!). I had a bad POTS flare following the move to their home becaus of stress, but after a couple of weeks I noticed I could finally wake up in the morning and feel rested!

3/10: I'm still noticing some improvement in fatigue, so much that my hubby and I decide to follow through on our goal to become foster parents. We get a 15-month-old little girl in the following month.

4/10: I've been having bad back and hip problems for several months, and it mostly pains me when I'm lying down. As a result, I'm forced to be up nearly the entire day. I'm exhausted from the pain, as well as from watching a toddler all day long.

6/10: I realize that I can stand for a good minute without having to shift my weight from one leg to another to keep my blood circulating! I can finally be busy most of the day with some mild activity and only have mild POTS symptoms! I still have burning pain, but it's no longer so bad that it dominates my thoughts. I'll continue on my neurontin and carvedilol (as well as high salt/fluids and compression), but I'm thrilled with my progress! I still have back and hip problems, but the increased activity has even helped this problem! I'm getting a steroid injection in my back on 7/13, but after this will contact my disability insurer and see what I need to do to get back to work (starting with increments of just a few hours at a time. I might never resume full-time work, but we'll see how it goes).

7/10: For the first time in four years, my heartrate standing up is sometimes in the 70's, even in warm weather! I still elevate my feet when sitting for more than a few minutes and mornings are quite rough with nausea and fatigue. But after a couple of hours of being upright, I am able to do mildly strenuous activity all day long!

Mayo had implicated the mono that I had in 2006 as the cause of my POTS, but I also think the mold, surgeries and relative immobility played a part. It was only when all of these other factors had been taken care of that I started improving. My mom has small fiber neuropathy, and I might always have some degree of pain and POTS symptoms. I think POTS has certainly made me a more thankful person and I hope to never take any measure of health for granted again.

I'll keep you posted! Yay!!!!

[potsgirl]

YAY for you! Keep us informed of how you're doing and if you do end of going back to work.

cheers,

jana

[Noreen]

Wonderful, wonderful, wonderful! With your newfound health you can enjoy your little girl more and more. Amazing sometimes how things work out - I remember how nervous you were about a toddler rather than a school-age child.

I'd go a bit slow with commitments if I were you, though. I am just worried about a relapse. You probably are thinking of work a day or two a week which is probably doable with the child.

As a plaque on my kitchen wall says..."Until further notice, Celebrate Everything!"

noreen

[roxie]

That's wonderful! Is there anything specific you did to get stronger?

I would love to strong enough to keep myself busy for most of the day with moderate activities

[TXPOTS]

Awesome. Thank you for sharing your story and offering those of us still struggling a ray of hope.

[nmorgen]

CONGRATULATIONS! I am so happy for you!

[janiedelite]

I'd go a bit slow with commitments if I were you, though. I am just worried about a relapse. You probably are thinking of work a day or two a week which is probably doable with the child.

As a plaque on my kitchen wall says..."Until further notice, Celebrate Everything!"

Yes, I agree. It seems that once I notice a bit of improvement I jump ahead in my thinking and put a lot of pressure on myself. It will probably take a few months before I get my SSDI ticket to work, the occupational therapist does a review for my long-term disability, I see my doctor and get all the paperwork to re-instate my nursing license, and then find an employer who will even take on this crazy person in such a depressed hiring market. Whatever I end up doing, I'm going to have to ease into it slowly, just a few hours at a time. And I agree that a day or two a week is all I could commit to with our foster child anyway. Thank you so much for your balanced approach to things!

To show how premature my thinking gets, yesterday I asked my husband when he thinks I can get off of my meds... you can imagine his reaction.

Still, I am SO thankful for how much better I function than in previous years. Thank you all for the congrats, and "Celebrate Everything!"

[Brye]

WOOO HOOOO! Thanks so much for the update. Hope all continues to go well for you! Keep us posted!!! I haven't let go of my nursing license yet but I'm having a heck of a time keeping up with the continuing education!!

Brye

[lieze]

That is fantastic-I'm so happy for you.

Thanks for sharing your story I think I needed to read that today.

[MomtoGiuliana]

That's GREAT. I also greatly improved after severe POTS in 2002/2003. I do have relapses, but nothing as severe as the initial illness.

[sandra claus]

Congratulations!

Thanks so much for sharing how you are doing. I look at older posts and notice many people who don't post anymore and have wondered if it was because they had improved.

I have had such a hard time trying to decide to let go of certain responsibilities (work, five horses, projects) because I'd hate to let them all go and then magically recover. But, I know deep down it is important to let go and focus on healing and taking care of ourselves and then try to work back up to the demands of our former life very gradually. Also a great time to take stock of what was important in our lives pre-illness and what wasn't.

[comfortzone]

Your post had me smile -- big time :-) So much of your life story had an heir? or is it air? of familiarity about it -- and I'm sure many could pull out some things they could identify with. I'm happy for your joy in things changing for the good! It's true nothing stays the same in life -- we keep moving forward toward healing and toward our dreams. One day at a time -- I know I tried work one year ago and got let go -- they said I was an excellent nurse and that they loved having me on board -- but I just couldn't keep up in the end. I took a homecare position thinking I could hide my disability somehow (four major joint replacements in 3 years left me a wreck) but alas I'd be dripping in sweat in someones living room - put the pulse-ox on my own finger after the patient and see my heart rate at 140 - Just standing! So I graciously accepted their decision - & they said if an office job opened up they'd give me a call. Well a year of further testing ensued - & I decided to try work again -- but not as a nurse. I just can't be physically strong and 'available' in mind and body to care for others in that capacity - yet. Chronic pain fatigues as you know, the meds leave you foggy, and the dysautonomia has a mind of it's own. I was seeing 3 patients a day and the norm was 6 or more. Now those 3 got exceptional care LOL -- as I could never 'rush' anyone ~ the struggle to just get out of the different homes furniture or to doorways up flights of stairs or down a ravene was ridiculous for me.....So I only write to share what it was like for me to go back to nursing....it didn't work. I expect to continue to feel better and I work with PT or OT to get stronger every day of the week...I just need to be patient as I try to get a correct diagnosis for my dysautonomia sx's, and more important a correct treatment plan. Then maybe I could try again. But till that time I am a cook working on my feet just 4 hours a day -- I had gone to chef school years ago. I drive home and have to lie down and recover a few hours -- But just working in itself seems to be healing.... May all your dreams come true and congratulations on that wee one -- such an inspiring story it really touched me! Thanks so much for writing.

[janiedelite]

Thank you everyone for sharing your struggles, setbacks, and successes. Funny how so many of us on here are health care workers!

Sandra Claus, I had a slow decline and am having an even slower recovery, but I'm enjoying every bit of normalcy possible. I've had a cold this past week which always makes the POTS worse. Today I'm feeling better and still marvel at the periods of feeling nearly normal lately. Today I got an epidural steroid injection for my back, so I'm dealing with some extra soreness related to the injection. Ups and downs, ups and downs... but at least this is a "normal" problem with actual treatments.

Nowwhat! thank you for sharing your story. It must have been hard to go through the loss of your career, but you seem to have a positive outlook. It is healing to be able to do something you enjoy (and get paid for it .

I've determined that if I'm able to work, I'm not going to let my home life suffer because I'm too exhausted from working with POTS. If I can only work a few hours a week, but can still have a somewhat rested and functional homelife, that's fine.

Mom to G, I am concerned that if I encounter serious illness or injury that my POTS progress could be seriously set back again. But thank you for staying on this site through your recovery and for sharing your ups and downs! You've helped me to see that (relative) recovery can be possible.