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StayAtHomeMom

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Everything posted by StayAtHomeMom

  1. Try Rolaids with gas relief. That always helped my bloating. Kefir (or probiotic) may help. Also see if changing your foods around helps. "Heavy" foods always made my bloating worse.
  2. My son's skin does that. Mine not so much. It is kind of fascinating when so many people have different symptoms for the same thing.
  3. I have had 2 sinus CTs, a chest CT with contract, 3 or 4 sets of chest Xrays, and a brain MRI with and without contrast. All in the past 3 years. I figure, prior to these past few years, I haven't had much radiation exposure. It was worth it. It ruled things out. And that was good for my sanity. I had a doctor that refused to do any imaging to confirm my oldest's son's diagnosis of federal anteversion. (Not sure on the spelling). Basically it means he walks funny, but nothing is going to help and it doesn't hurt him in the long run. Still not convinced on that diagnosis, because the doctor refused the imaging. His excuse was radiation exposure.
  4. Is it possible it could be a simple ANS malfunction?
  5. As far as the records are concerned make sure they have the records from the doctor that filled out the restrictions. All of them. So that they have that information. Sometimes that can help. Then they will see why the doctor is restricting you.
  6. I would say since you feel it is similar to the last time you had something going on, there is a chance. Hopefully the colonoscopy will give insight to what is going on. My hubby felt like he pulled a muscle in his back a few weeks ago. And since then he has had a dull aching pain in his right back muscle. From his hips to shoulder blade. This is exactly what happened last time he had a kidney stone (had to have it surgically removed). He admitted to me yesterday it is possible it could be the kidney stone again. But he isn't sure. The only reason they found it last time because of trace blood in his urine. Nothing else (besides the back pain) was normal kidney stone issues. They could see it in a CT but not xray. It was kinda wild.
  7. I can relate as well. When I was first diagnosed and trying meds, if I feel it didn't work I would just suffer through til it was time for the next appt. But when my cardiologist found out I was doing this he frowned at me and said if the medicine is not working you can call and either I can call in a different prescription or have you come in sooner to be seen again. Since then I have learned to keep in contact with my doctors. Most of my doctors have a portal that I can shoot a quick message. And they can answer it in their own time. Sometimes they call back but mostly it is just an answer to my question. If you feel things are not working, talk to the doctor or even nurse and try to see if he wants to try a new med, or have you come in, or wait it out 2 weeks. (These are the usual options).
  8. You are amazing. The fact that you are asking these questions are awesome. Try suggesting things that she would like that won't be as physical. So instead of a walk, how about a card game. Things like that. But please don't be afraid to still go out. Just keep it simple, and allow her time to recover. Also we have to push ourselves. It is part of dealing with POTS. If we didn't, you would see a decent amount of people that just kind of plop down like a stubborn 2 year old Asking, "are you OK?" Is fine. As long as you take us at our word. My hubby drives me nuts when he keeps asking. When I am trying to push through, the energy it takes to keep answering such a question can take its toll. if you feel like you had to call it early because of her health, nothing says you can't text. Most days when I feel bad I hate talking (it can be exhausting) but I don't mind socializing through text of some sort. I think another thing you could do is try talking to her. Tell her how you feel. Sometimes just knowing some one cared enough to join a forum to ask your questions, can be a big uplift. And she can point out her trigger issues. POTS is so unusual. It manifests so differently in different people, even family members.
  9. I wish the same thing. So many times I get the look like I am exaggerating. And it can be frustrating and lonely.
  10. Our public library has an e-book selection or you can order your books and just go by and pick them up from the hold shelf. When my energy is low I just pick the thing I think I can do and just do that. I wouldn't try to over do it or you will regret it. If it makes you feel better alternate your bad days. Say you have 3 bad days a month. One time go to church, the next have dinner with your family, and the next play games. There are days where I just lay on the couch and play video games. It is about all I can do. But my family is understanding about it and I can still socialize with them and my friends online so I don't feel so bad.
  11. I have that problem. There is a pair of double crutches on amazon I have had my eye on for a while. They are a little expensive ($150) but they fold and adjust. I would love to have them for those bad days where walking is so hard but I worry about how I would look. I had stitches on my left hip last year after a procedure and it killed me to use any kind of assistance. I felt humiliated using an electric cart at Wal-Mart even though I knew I couldn't walk through the store.
  12. This sounds like there is not cure. Only remission. If that is the case you may have an autoimmune disease which can cause your low grade fevers. And POTS. When they did your thyroid testing did they check T3 and T4 or just you TSH?
  13. I tried a low carb tortilla shortly after I started and it brought back the diarrhea. And stomach bloating. I think my body doesn't like the bread so when I come off keto I will still stay away from it. I currently switched to diet soda so I can have my caffeine. But aspartame isn't good for you long term so when I reach my goal I am gonna go back to hidden carbs. Honestly I probably do more of a low carb then keto. I don't actually count my daily carbs. I just keep it as low as possible and try to up my fat content as much as possible. I don't eat a lot to begin with so my calorie counts are my biggest problem. One of these days I will track my numbers exactly but honestly I am just too lazy. Redi-whip is my favorite treat. And I found I can do a decent hot cocoa. (Almond milk, heavy whipping cream, cocoa, and sweetener).
  14. What do you mean an immune disease that was cured?
  15. I have seen this problem crop up on here a lot. Including myself. The best response I can come up with is medications are helping the BP and HR but not the other symptoms that go with having POTS/Dysautonomia. If you think about it, the BP and HR issues are symptoms. They don't always cause you to feel the other symptoms. Sorry I couldn't give a better answer. If you figure out something to test blood volume let me know. I would love to get that tested too.
  16. I cheat. I usually won't take a shower unless my husband is home and make him shower with me. It helps ease my anxiety. If anything happens he is there. Sometimes he just sits in the bathroom. But he is there.
  17. If you decide to try again (we all seem to at some point) try getting up in stages and see if that helps. I miss that occasional bath as well. I have a hard time just taking a shower these last 2 years. I can't imagine trying to soak in a bath. That being said, I know I shouldn't but this past summer I spent some time in a hot tub and did well. Not sure if it has something to do with "sitting" in it and being able to easily get out, or if my meds were just working that well. Either way it was a nice treat.
  18. I only had to cut out milk. I can have cheese and butter and heavy whipping cream. They all have high fat with low carb. The diet has been an adjustment but my body feels better and I am down almost 30 lbs in 4 months. With no exercise. Honestly though I feel like it is more weight because of the inches. I should have measured when I started. I was about 50 lbs overweight. And I am halfway to my goal. When I hit my goal I doubt I will go back to bread and pasta. But I will go back to hidden carbs (like sugar) and see if it messes with my GI. I am hoping not because I miss my mountain dew.
  19. I am glad you are looking at your situation differently. The way you perceive things can be a huge difference. I used to say I can't a lot and it gave me a dark cloud a lot. Now it is more I shouldn't. But maybe I can try today. It backfires a lot and I get exhausted. But I still try. I am too hard-headed not to. But usually I do it when I have the "spoons" to waste. A lot of us have wondered how our condition isn't causing damage. Maybe it is. Maybe it isn't. The body can do amazing things. Maybe it is healing itself. I feel the opposite with my bowel movements. Since I started the keto diet (to lose excess weight) I have started having halfway normal bowel movements once a day. Sometimes every other day. Still probably softer than normal but I feel it is way better then mostly liquid 4 times a day. I was getting tired of spending so much time in the bathroom
  20. In theory it could work. I have never tried because my O2 levels have always been fine. DO NOT USE ASTHMA MEDICATION. They kept saying I had asthma and they kept giving me albuterol. Kept making it worse. Found out later it was because it was jacking up my HR. One thing that was odd that would sometimes work was eating Rolaids. The one with gas relief. It has some extra magnesium. Not sure why it would help. But I remember calling my ask a nurse hotline and while I was talking to her I ate one and by the time I was done I didn't feel the need to go to the ER anymore. *shrug* I chalk it up to my body is weird. Good luck and I hope you have some relief soon. Seriously try the revive vitamin water. It makes a difference vs Gatorade.
  21. I get the same sensations you describe. My number one symptom since day one (over 3 years now) has been breathing issues. I feel like the bottom 1/3 of my lungs don't work right. I have had the sensations you describe with O2 numbers of 97 or higher. Lowest I have ever had is 95. Treating my POTS with my medication has seemed to ease the breathing issues. But I still have bad days. Honestly mine never goes away. I smoke and originally the doctors tried to say it was my smoking and anxiety. (I had to request a TTT to prove my POTS). The thing that has helped me the most: salt and vitamin water. If you have to eat a fingertip of Salt straight from your shaker (normal table salt seemed better). I used to eat French fries or tator tots dipped in salt. The vitamin water I would drink is the "revive" one. It has extra potassium in it. Usually this won't cure the breathing issues immediately but I would go to sleep and wake up feeling loads better. Good luck and make sure you see a pulmonologist to rule out lung issues. Heart and lungs are closely effected.
  22. Sometimes we overlook something just because it looks more like a design. Glad you found it though
  23. I had a chunk of bone floating in one of my knees when I was younger. They wanted to go in and remove it. I told them no. I wanted them to fix my back. I had knee pains since I was like 15, upper back pain since my first son (17), lower back pain since my second son(19), and hand pains since about 20. I am currently 33. Since my illness started 3 years ago I have noticed more swelling then pain. But my pain has always been there. In theory it is possible it could be fibromyalgia. It seems to be pretty common with POTS. But a friend of mine who has it says she doesn't think I have it because none of the usual trigger spots hurt. Have your had your vitamin D checked lately? Supposedly low Vitamin D can cause joint and bone pain.
  24. I have had joint pain since I was a teenager. Honestly I never thought about it being a POTS symptom. I just assumed I would develop RA like my mom. Or I have undiagnosed hEDS. The usual blood tests for joint pain usually come up normal for me so I am not sure why I hurt. A few years back the doctors gave me a short burst of steroids. I honestly didn't realize how bad my joint pain really was until it was gone. I have lived with it for over 15 years and it kind of faded into the background.
  25. If you are on the topic listing page, at the top there is a start a new topic button. I only ever use my cell phone. I just pop open my browser whenever I have some free time.
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