I can tell you all this – I’ve had issues with fluid retention like this off and on for years. It’s not always dependent on a reaction, but I do get swelling then to. This is swelling that is just there and is hard for anyone to see other than me, but you see it off and on, there’s a clear diff of about 5-10 lbs and it happens fast. It’s also everywhere, but specifically affects my legs and arms. And both places aren’t where I gain weight quickly. My legs yes, but that’s on my hips, the water retention and what my skin looks like happens on my legs above my knees and I don’t have fat there. It’s the craziest thing bc I used to think it was bc I ate too much of sweets, but when it comes off, it comes off fast – like in a day. I can suddenly see muscles that I thought I lost (I workout often also) and my skin looks different. I have learned that too much solid food or crappy food does play a role, as does the type of workouts I do. When I don’t sweat a lot, I swell like this.

Now, I’m in a period where I’ve had it longer than usual and I can’t rid of it like usual. I’ve not been cycling through, or not 3-4x a week like I did for a few years, but I’ve still been active and “sweating.” I’ve not said anything to my docs bc it’s just silly and annoying, and I’m not having a flare of inflammatory arthritis or anything, but I am flared. It seems to be related to POTS in some way and when I spoke to Dr. F the other day for one of my follow-up phone calls, I happened to mention what was going on bc of an issue I had paddle boarding on vacation. The picture is of my knees and I will attach another one below. I didn’t hurt my knees, only paddle boarded on my knees bc my daughter was on my board. I also paddle board a lot and the day that this happened, I had just been out for an hour by myself no issues. And like I said, paddle boarding isn’t strenuous to me. But after I was on my knees, I can off the board and my legs felt like jello. I didn’t feel more swollen than before, just that my legs were shaky to the point that I felt like I may dislocate something. I really never feel like this. I wasn’t shaky elsewhere either. I ended up taking a picture of my knees a few hours later bc someone commented that they were still red and looked like they had a dent from kneeling. I was kinda surprised by that and bent down to take pic because I couldn’t see what they saw. I was shocked and alarmed by the pictures of my knees, but to be honest .. I can’t say they didn’t look like this before. It was probably worse, but as I mentioned, I can tell I’m retaining fluid in my legs – esp tops of knees/Lower thighs, which isn’t normal unless I’m dealing with this issue. My legs were shaking for 4-5 hours afterwards, but there was no pain. No knee damage, or arthritis pain, but my knees and knee caps are very Hypermobile. I usually can paddle board on my knees though if needed, but watching my knees is like my 2nd job – I’m pretty crazy about anyone coming near my knees bc they will dislocate that easily. Ie. I can’t lay on a massage table without laying a certain way or feet up, bc if I relax too much, they will dislocate. It’s still a risk with my feet up, but I just try to not fall asleep. Anyway, I tested myself again the next day, no kid on my board though. Fine standing, but after I was on my knees, shakiness galore. It also caused tremendous fatigue and I felt a bit sick to my stomach, but that’s not abnormal either. Anyway, the knee thing and seeing other pics made me realize how bad the swelling is right now. So, when I mentioned something to Dr. Francomano over the phone, she was concerned and especially after I told her about the osmoality test a few years ago. She mentioned a condition or issue and referred to it as an absorbtion issue, which sounded like what someone mentioned the other day. Hence, why I’m trying to find the term so I can email Dr. Afrin. I’ve also spoken to another doc friend of mine who has EDS/pots/MCAS and she also said pots. Anyway, pics attached, but like I said … The issue has been going on again, so paddle boarding on my knees isn’t to blame. It only made me realize how bad it was and it also made it worse obviously (and my legs really shaky for some reason). I think I just overexerted the accessory muscles that have to hold my knee caps in place.

Anyway, the knee thing and seeing other pics made me realize how bad the swelling is right now. So, when I mentioned something to Dr. Francomano over the phone, she was concerned and especially after I told her about the osmolality test a few years ago. She said a condition or issue and referred to it as an absorption issue, which sounded like what someone mentioned the other day. Hence, why I’m trying to find the term so I can email Dr. Afrin. I’ve also spoken to another doc friend of mine who has EDS/pots/MCAS and she also said pots. Anyway, pics attached, but like I said … The issue has been going on again, so paddle boarding on my knees isn’t to blame. It only made me realize how bad it was, and it also made it worse obviously (and my legs shaky for some reason). I think I just overexerted the accessory muscles that have to hold my kneecaps in place.

Crazy .. I know.

Cycling was what helped me take it off first, and I didn’t start cycling to help with fluid, but it helps immensely. So does more intense strength training. A few years ago I had an osmoality test and actually wrote down to tell my doc that my salt was probably through the roof because I had eaten a ton of turkey pepperoni before the test. The test of my urine and blood came back negative for salt. And the way they test you is in two steps – so they can check the way your body processes salt. When I told my doc that I had eaten so much salty food, but nothing was in my urine or blood, that’s when we knew I had some kind of issue that we didn’t know the name for. However, I’ve found balance through diet, exercise and drinking/eating a mostly liquid diet. I also cannot drink a ton of water with electrolytes because I blow up, but if I drink these raw juice drinks made with alkaline water and eat minimal solid food (i.e. Snack through the day), it comes off. Working out does play a part, but I can usually maintain this swelling with what I eat and drink. Now, I’m in a period where I’ve had it longer than usual and I can’t rid of it like usual. I’ve not been cycling though, or not 3-4x a week like I did for a few years, but I’ve still been active and “sweating.” I’ve not said anything to my docs bc it’s just silly and annoying, and I’m not having a flare of inflammatory arthritis or anything, but I am flared. It seems to be related to pots in some way and when I spoke to dr. Francomano the other day for one of my follow-up phone calls, I happened to mention what was going on bc of an issue I had paddle boarding on vacation. The picture is of my knees and I will attach another one below. I didn’t hurt my knees, only paddle boarded on my knees bc my daughter was on my board. I also paddle board a lot and the day that this happened, I had just been out for an hour by myself no issues. And like I said, paddle boarding isn’t strenuous to me. But after I was on my knees, I can off the board and my legs felt like jello. I didn’t feel more swollen than before, just that my legs were shaky to the point that I felt like I may dislocate something. I really never feel like this. I wasn’t shaky elsewhere either. I ended up taking a picture of my knees a few hours later bc someone commented that they were still red and looked like they had a ton of swelling.

Now, I’m in a period where I’ve had it longer than usual and I can’t rid of it like usual. I’ve not been cycling though, or not 3-4x a week like I did for a few years, but I’ve still been active and “sweating.” I’ve not said anything to my docs bc it’s just silly and annoying, and I’m not having a flare of inflammatory arthritis or anything, but I am flared. It seems to be related to pots in some way and when I spoke to dr. Francomano the other day for one of my follow-up phone calls, I happened to mention what was going on bc of an issue I had paddle boarding on vacation. The picture is of my knees and I will attach another one below. I didn’t hurt my knees, only paddle boarded on my knees bc my daughter was on my board. I also paddle board a lot and the day that this happened, I had just been out for an hour by myself no issues. And like I said, paddle boarding isn’t strenuous to me. But after I was on my knees, I can off the board and my legs felt like jello. I didn’t feel more swollen than before, just that my legs were shaky to the point that I felt like I may dislocate something. I really never feel like this. I wasn’t shaky elsewhere either. I ended up taking a picture of my knees a few hours later bc someone commented that they were still red and looked like they had a dent from kneeling. I was kinda surprised by that and bent down to take pic because I couldn’t see what they saw. I was shocked and alarmed by the pictures of my knees, but to be honest .. I can’t say they didn’t look like this before. It was probably worse, but as I mentioned, I can tell I’m retaining fluid in my legs – esp tops of knees/lower thighs, which isn’t normal unless I’m dealing with this issue. My legs were shaking for 4-5 hours afterwards, but there was no pain. No knee damage, or arthritis pain, but my knees and knee caps are very Hypermobile. I usually can paddle board on my knees though if needed, but watching my knees is like my 2nd job – I’m pretty crazy about anyone coming near my knees bc they will dislocate that easily. Ie. I can’t lay on a massage table without laying a certain way or feet up, bc if I relax too much, they will dislocate. It’s still a risk with my feet up, but I just try to not fall asleep. Anyway, I tested myself again the next day, no kid on my board though. Fine standing, but after I was on my knees, shakiness galore. It also caused tremendous fatigue and I felt a bit sick to my stomach, but that’s not abnormal either. Anyway, the knee thing and seeing other pics made me reaAlize how bad the swelling is right now. So, when I mentioned something to Dr. Francomano over the phone, she was concerned and especially after I told her about the osmoality test a few years ago. She mentioned a condition or issue and referred to it as an absorbtion issue, which sounded like what someone mentioned the other day. Hence, why I’m trying to find the term so I can email Dr. Afrin. I’ve also spoken to another doc friend of mine who has EDS/pots/MCAS and she also said pots. Anyway, pics attached, but like I said … The issue has been going on again, so paddle boarding on my knees isn’t to blame. It only made me realize how bad it was and it also made it worse obviously (and my legs really shaky for some reason). I think I just overexerted the accessory muscles that have to hold my knee caps in place.

My legs were shaking for 4-5 hours afterwards, but there was no pain. No knee damage, or arthritis pain, but my knees and knee caps are very Hypermobile. I usually can paddle board on my knees though if needed, but watching my knees is like my 2nd job – I’m pretty crazy about anyone coming near my knees bc they will dislocate that easily. Ie. I can’t lay on a massage table without laying a certain way or feet up, bc if I relax too much, they will dislocate. It’s still a risk with my feet up, but I just try to not fall asleep. Anyway, I tested myself again the next day, no kid on my board though. Fine standing, but after I was on my knees, shakiness galore. It also caused tremendous fatigue and I felt a bit sick to my stomach, but that’s not abnormal either. Anyway, the knee thing and seeing other pics made me reaAlize how bad the swelling is right now. So, when I mentioned something to Dr. Francomano over the phone, she was concerned and especially after I told her about the osmoality test a few years ago. She mentioned a condition or issue and referred to it as an absorbtion issue, which sounded like what someone mentioned the other day. Hence, why I’m trying to find the term so I can email Dr. Afrin. I’ve also spoken to another doc friend of mine who has EDS/pots/MCAS and she also said pots. Anyway, pics attached, but like I said … The issue has been going on again, so paddle boarding on my knees isn’t to blame. It only made me realize how bad it was and it also made it worse obviously (and my legs really shaky for some reason). I think I just overexerted the accessory muscles that have to hold my knee caps in place.

Of course, I chose the feature picture (& Facebook profile) versus a picture with my swollen knees, because I’m not one to post about any of this on my personal FB page – pics especially.