25 Dysautonomia 'Veterans' Give Advice to the Newly Diagnosed

Very often in our support group, we go through large growth spurts. Sometimes it happens that we are adding a bunch of people who have had dysautonomia for a while and are simply finding our group for the first time. A few weeks ago, we happened to add a lot of those who were newly diagnosed. We asked some of our “veterans” to share with our “newbies” the best advice they had that they wish they had been given at the beginning of their diagnosis journey. Here is what they came up with, and we think it’s a fabulous list of some well earned “sage” wisdom from seasoned veterans:

1. “Things will get better with time and knowledge.” – Amanda A.

2. “No two people’s journeys are alike… don’t compare yourself to others. You know your body better than anyone.” – Dani F.

3. “Keep advocating! Take one day at a time.” – Maryellen W.

4. “Make sure your specialist listens to you and knows your symptoms. Not all treatments work for everyone.” – Bette D.

5. “Work to find your primary cause of your dysautonomia.” – Todd S.

* Note, we did point out here that not everyone is able to find their root cause, and we felt that was important for those who were newly diagnosed to know. We still loved this comment, because so many of our veterans have been able to find their root causes, or to be lucky enough to work with doctors who had a lot of patience and the willingness to refer out to other specialists in an attempt to identify the root cause, and it can be important for those still looking to consider when to move on to another doctor who might be more willing to help them. We also posted the known underlying causes of dysautonomia.

6. “I agree that we are all unique and have different journeys. I would also add to keep track or have a log of what you go through daily and write a list of things you want to discuss with your doctor just in case you forget that day. Writing lists helps me so much. Also, it is ok to rest and take care of yourself. Lastly, it is ok to switch doctors if your doctor isn’t helping or understanding.” – Laney R.

7. “Listen to your body. Learn its ins and outs and signs. When your new it can feel as though you’re barely treading water, but you’ll get there.” – Katie T.

8. “Having lived with it for almost three years I’d say — what works for some does not work for all. I’ve been advised to do so many different things (give up gluten, etc… turns out I have gastroparesis and gluten is one of my only safe foods along with soup with clear broths and Jell-O and crackers, etc). Do 1 thing at a time to see if it helps and don’t feel pressured to do it just because others are.  Oh, and goodness… be kind to yourself! If someone you loved had these conditions… you would be overwhelmed with compassion for them. Turn that inward!” – Melissa S.

9. “Trust your instincts. If you think you’re bad enough for an ER visit, then go! A little saline never hurt anyone… and for us, it can really be a lifesaver.” – Laurie H.

10. “Oh-so-many times I look back and wonder why I refused an ambulance because ‘I didn’t want to make a fuss’ — if I’d only been more ‘fussy’ I probably would have gotten a diagnosis a lot earlier!” – Claire M.

11. “Food can be your best medicine or your worst poison. Listen to your body. Two of my favorite safe foods are homemade chicken stock and white rice, because together with a little time and effort, you can make amazing risotto. It’s four whole ingredients and it’s an absolutely amazing new flavor and texture. Find ways to love the foods you can eat, if you’re still able to eat at all. (I wanted to be a chef before this, so I’m a little food oriented.)” – Mariah M.

12. “Stay hydrated. There is a long-held basic rule of thumb for daily hydration. It is: Half your weight (in pounds) is how many ounces of water you should consume every day.” – Cindy S.

13. “When reaching to the back of the refrigerator, make sure you have long arms, or your head clears the side of the fridge. Also, make sure your head is outside of fridge before standing up.” – Lisa C, a.k.a. our resident comedian)

14. “[POTSies] move slowly when getting up from laying down to sitting, and sitting to standing. Avoid bending around, and if you do, stand back up slowly.”- Cindy S.

15. “Drink your water each and every day. And agreed — listen to your body (and sometimes close your ears to everyone else around you when they make comments.). You can pay a dear price for overdoing it, and many people are not going to get that.” – Deb R.

16. “You will have periods of bad days but I promise there will be good days, too! Find your new ‘normal.’ You will figure out what helps and what hurts, remember that and trust yourself! Rest when you need to! Push yourself when it’s important as long as you will rest afterwards. It’s a balancing act sometimes! Listen to your body, trust your instincts, and give yourself grace! You are a fighter! It’s ok to have have bad days, just don’t ever stop fighting!” – Beth C.

17. ”Managing this is a series of small victories. There may be the occasional breakthrough for some, but mostly it is a compilation of successes that is found over time. For example, raising the head of your bed may not seem to make much of a difference. Either compression stockings or extra salt and water. But combined it may make some difference. Again, my point is much of this is a series of small victories that accumulate to being a better managed you.” – George J.

18. “Slowly increase your salt and water — way beyond what you think is normal or healthy (with the supervision of a doctor). Measure it obsessively. Once you have the dose that helps, never miss a single dose. Also keep an eye on the barometric pressure — that can mess with you. If you feel unwell for ‘no reason’ I bet you it’s the weather.” – Claire M.

19. “My sage advice is this: keep a symptom diary. In the beginning, the numbers probably matter, but as a veteran I find it isn’t the number as opposed to the symptoms I pay attention to. I rarely take my vitals much these days. Medication management can be hard, and it can be a trial by fire to find the right meds at the right dose and the right combo, and you have to find the right doctor for you for that process! Flares can be hard, really hard, and as an EDSer, my good times are spring and summer and my bad times are fall and winter, and my winter flares throw me off every year. I’m lucky to have a wonderful and amazing local team of doctors and out of state experts that took me years to build, but I reap the benefits of that hard work now, and that does include identifying my underlying cause of dysautonomia. It was an uphill battle in the beginning, but it did get a lot better with time, and I am glad I advocated hard for myself until it did!” – Alexandra Z.

20. “When you think, ‘I can’t handle this,’ know that deep down inside a part of you can. That part might seem small, but it’s the flame of motivation that never goes out. Ask for encouragement or support on this group on those days. This holds true for most humans… we all have rough days. ‘Be kind, for everyone you meet fighting a hard battle.’ But it’s especially true with invisible illness.” – Beth G.

21. “It’s a roller coaster, both mentally and physically. I have five family members with it and we’re all a little different even though we have similarities too. Things that help me beyond meds: a shower chair, my wheelchair for going out, fluid loading (500 mL in less than five minutes) right before I do something that could make me worse, my heavy duty compression, meditation, and self-hypnosis. Good psychological support too. I know for me when it first got really bad, I didn’t want to go to seek that help because I had had doctors tell me in the past that my condition was psychological and I felt like I was saying they were right if I went to someone. But eventually I realized that I was depressed. That it went along with being sick and was normal. Finding someone who specializes in chronic illness and pain can be very helpful in gaining coping mechanisms.” – Erin S.

22. “Definitely that you need to do your own research and not be afraid to push your doctor to try different treatment if something doesn’t work for you.” – Julie R.

23. “Listen to your body. When you need to rest/sit etc. make sure you listen, even if you have to sit on the floor. You may look strange to others but sitting on the floor is better than hitting it. Also, it’s so important to drink those fluids. Have both plain water and electrolyte drinks. And don’t be afraid to advocate for yourself, and try different specialists until you find one that works for you. Don’t stay with someone just because other people have liked them. We’re all different in terms of personality, what we are looking for in a doctor, as well as our symptoms. You’re strong, and you will get through this. On tough days (and good ones) we are here for you.” – Emi M.

24. “Always be prepared when leaving house. Salty snacks and fluids!” – Jennifer O.

25. “Listen to your body and remember doctors don’t always know everything. Don’t be afraid to fire a doctor and find a new one if your current one isn’t treating you right.” – Chassity F.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by poplasen