1 00:00:00,040 --> 00:00:02,600 Hey, I'm hyper mobile and if you're listening to this, I'm 2 00:00:02,600 --> 00:00:06,040 guessing you might be too. Hi, my name is Alex and I'm your 3 00:00:06,040 --> 00:00:08,680 hyper mobile host. And today we're talking all 4 00:00:08,720 --> 00:00:11,160 about feelings. Specifically, we're going to be 5 00:00:11,160 --> 00:00:14,000 looking into what does hyper mobility even feel like? 6 00:00:14,000 --> 00:00:17,120 Because I can't tell you how often I have patients come and 7 00:00:17,120 --> 00:00:19,880 see me and be like, I don't know if I'm weird or I don't know if 8 00:00:19,880 --> 00:00:21,560 it's just me, but this is what I'm feeling. 9 00:00:21,560 --> 00:00:24,420 And then they'll go on to give a really thoughtful explanation of 10 00:00:24,420 --> 00:00:25,780 what they're feeling in their bodies. 11 00:00:25,820 --> 00:00:30,620 And this experience, although it is, and it it can be certainly 12 00:00:30,620 --> 00:00:32,940 different from how people with normal connective tissue 13 00:00:32,940 --> 00:00:34,180 describe feeling in their bodies. 14 00:00:34,380 --> 00:00:36,180 There are a lot of consistencies. 15 00:00:36,180 --> 00:00:38,660 And I hear the same things for my hyperbole patients 16 00:00:38,660 --> 00:00:40,580 repeatedly. So I want to share some of those 17 00:00:40,580 --> 00:00:42,460 with you today in case there's anyone out there who's feeling 18 00:00:42,460 --> 00:00:43,660 something weird or feeling alone. 19 00:00:43,900 --> 00:00:45,140 And this might help you make sense. 20 00:00:45,140 --> 00:00:47,900 It might help you not feel alone because that is so, so 21 00:00:47,980 --> 00:00:50,380 important. But to start off the episode, 22 00:00:50,380 --> 00:00:52,940 I'm going to be sharing the story of my shoulder and 23 00:00:52,940 --> 00:00:55,660 specific what I described it as feeling like to the 24 00:00:55,660 --> 00:00:59,100 physiotherapist when I was 16 and how that led to some 25 00:00:59,500 --> 00:01:02,020 confusion and some miscommunication, certainly in 26 00:01:02,020 --> 00:01:04,900 terms of management of that injury for me. 27 00:01:05,300 --> 00:01:09,420 And then finally we are going to be talking a bit about weird 28 00:01:09,420 --> 00:01:13,300 feelings and small fiberneopathy and what how I how I manage 29 00:01:13,300 --> 00:01:15,580 those kind of weird symptoms and how I recommend that patients 30 00:01:16,020 --> 00:01:18,540 manage them as well and communicate them to their 31 00:01:18,540 --> 00:01:20,980 appropriately qualified healthcare providers. 32 00:01:21,180 --> 00:01:24,100 Now before we get started, I do want to thank everyone who's 33 00:01:24,100 --> 00:01:27,940 taken the time to leave review. 33 of you so far have done that 34 00:01:27,940 --> 00:01:33,020 and I am so grateful for that. I'm I'm so touched and to see 35 00:01:33,020 --> 00:01:35,220 all the positive feedback to everyone who's taken the time to 36 00:01:35,220 --> 00:01:37,390 e-mail in it really has meant a lot to me. 37 00:01:37,390 --> 00:01:39,670 And thank you to everyone who's been so understanding. 38 00:01:39,670 --> 00:01:43,310 With the kind of recent hiatus that we've taken from posting 39 00:01:43,310 --> 00:01:47,960 the show regularly, we had some audio issues which luckily have 40 00:01:47,960 --> 00:01:51,240 now been resolved and I hope that you can hear the smooth, 41 00:01:51,640 --> 00:01:55,120 smooth, buttery and mellow quality of the audio in your 42 00:01:55,120 --> 00:01:57,480 ears today. Or if you're watching this 43 00:01:57,480 --> 00:01:59,440 visually, we now have video as well. 44 00:01:59,440 --> 00:02:04,440 And I'm so happy that we are able to expand the presence of 45 00:02:04,440 --> 00:02:07,320 this podcast onto a video format because I know for accessibility 46 00:02:07,320 --> 00:02:11,160 issues that does help as well. Now, today's podcast episode is 47 00:02:11,160 --> 00:02:14,200 brought to you by kid and energy, so if you do hear some 48 00:02:14,200 --> 00:02:18,080 noises in the background, that noise is my Kitty cats. 49 00:02:18,080 --> 00:02:22,460 That's Cleopatra and Ranger and they might be running around and 50 00:02:22,460 --> 00:02:25,020 making some background noise, but we will try to keep it to a 51 00:02:25,180 --> 00:02:28,500 minimum to get started. My shoulder injury when I was 52 00:02:28,500 --> 00:02:31,580 16, so my shoulders have always been my most hyper mobile 53 00:02:31,580 --> 00:02:33,180 joints. They are what caused me the most 54 00:02:33,220 --> 00:02:35,180 grief. I'm pleased to say they don't 55 00:02:35,180 --> 00:02:37,820 cause me any issues at this point any longer. 56 00:02:37,940 --> 00:02:40,940 However, when I was 16 I was in agony. 57 00:02:41,260 --> 00:02:43,980 I was having pain doing weird things that didn't make sense. 58 00:02:43,980 --> 00:02:48,060 So my main complaints to the physio at at the time were that 59 00:02:48,060 --> 00:02:51,160 I would have pain when running, so that really aggravated my 60 00:02:51,160 --> 00:02:52,760 shoulder injuries. I would have pain if I was like 61 00:02:52,760 --> 00:02:54,520 skipping rope. Anything that jostled my 62 00:02:54,520 --> 00:02:58,560 shoulders hurt. I had pain sitting on a spin 63 00:02:58,560 --> 00:02:59,720 bike. I would go and do spinning 64 00:02:59,720 --> 00:03:02,440 classes with my mom and I would get a lot of pain in my 65 00:03:02,440 --> 00:03:04,880 shoulders, especially if I didn't change position 66 00:03:04,880 --> 00:03:07,800 routinely. I would also have pain sleeping 67 00:03:07,800 --> 00:03:09,360 at night. And of course when the physio 68 00:03:09,360 --> 00:03:11,480 was testing my shoulder, I wouldn't have pain really on a 69 00:03:11,480 --> 00:03:14,480 lot of those movement tests. Except of course raising my arm 70 00:03:14,480 --> 00:03:16,560 above 90 degrees was what hurt me. 71 00:03:17,120 --> 00:03:20,470 Long story short, the physio was trying to get to the bottom of 72 00:03:20,470 --> 00:03:22,590 it and I remember that she would ask me like what does it feel 73 00:03:22,590 --> 00:03:23,550 like? What are you feeling? 74 00:03:23,550 --> 00:03:28,670 Is it painful? And I insisted no, it's not 75 00:03:28,670 --> 00:03:32,710 pain, it doesn't feel like pain. And she was just very confused. 76 00:03:32,710 --> 00:03:36,470 And again, like some of this is understandable and hopefully the 77 00:03:36,470 --> 00:03:39,180 entire medical and healthcare industry will continue to 78 00:03:39,180 --> 00:03:41,460 develop a will continue. Maybe that's not the right word, 79 00:03:41,460 --> 00:03:43,540 but we'll develop a better understanding of different 80 00:03:43,540 --> 00:03:45,900 experiences because we all have different experiences. 81 00:03:46,100 --> 00:03:48,060 But she didn't really know what to do with the fact that I 82 00:03:48,060 --> 00:03:51,700 wasn't saying I felt pain. So I would go on to say, you 83 00:03:51,700 --> 00:03:52,940 know, my shoulder, here's how it feels. 84 00:03:52,940 --> 00:03:55,340 And and this was the phrase I used and this is what's stuck in 85 00:03:55,340 --> 00:03:58,260 my head and what I mentioned in a very popular TikTok video 86 00:03:58,260 --> 00:04:02,260 about a year ago, I was like my shoulder, it feels homeless. 87 00:04:02,340 --> 00:04:04,460 It feels like it doesn't have a home. 88 00:04:04,940 --> 00:04:06,900 That confused her very much because she was like, does it 89 00:04:06,900 --> 00:04:08,460 feel unstable? Does it feel like it's going to 90 00:04:08,460 --> 00:04:10,780 dislocate? And I said no, it just feels 91 00:04:10,860 --> 00:04:13,940 homeless. So obviously that didn't lead to 92 00:04:13,940 --> 00:04:15,740 a good outcome. But that was the phrase that I 93 00:04:15,740 --> 00:04:17,899 used. And that was a phrase which 94 00:04:17,940 --> 00:04:21,420 online seemed to help a lot of people kind of recognize what 95 00:04:21,420 --> 00:04:22,700 they were feeling in their joints. 96 00:04:22,700 --> 00:04:25,820 Because when all that you've known it, your whole life is 97 00:04:25,820 --> 00:04:28,340 hyper mobile connective tissue because this is something that 98 00:04:28,420 --> 00:04:31,180 people who have HEDS&HSD are born with it. 99 00:04:31,180 --> 00:04:33,140 It's not something that you develop, it's a genetic 100 00:04:33,140 --> 00:04:36,220 condition. So when you you have that you 101 00:04:36,340 --> 00:04:39,900 feel things differently and if all that you know is your normal 102 00:04:40,060 --> 00:04:42,300 and that's what you felt your whole life, you're not going to 103 00:04:42,300 --> 00:04:45,540 really be saying oh, like it feels unstable because you don't 104 00:04:45,540 --> 00:04:48,860 know what's stable, feels like. So I think that's why that. 105 00:04:48,860 --> 00:04:50,940 I think that's why I was using that phrase. 106 00:04:51,100 --> 00:04:53,900 It feels homeless and it's weird for me. 107 00:04:53,900 --> 00:04:56,020 Now I'm someone, if you're watching the video you'll see my 108 00:04:56,020 --> 00:04:58,340 shoulder muscles. I'm someone who luckily was able 109 00:04:58,340 --> 00:05:01,420 to build up quite a bit of shoulder musculature and my 110 00:05:01,420 --> 00:05:03,300 shoulders. Now if I had to describe how 111 00:05:03,300 --> 00:05:05,840 they feel, they feel like they have a little muscly home. 112 00:05:05,920 --> 00:05:09,360 They feel secure. But at the time, saying that my 113 00:05:09,360 --> 00:05:12,520 shoulder felt homeless and saying that I wasn't in pain, 114 00:05:13,600 --> 00:05:15,800 that was the best I could do. And I wish that I'd had a 115 00:05:15,800 --> 00:05:19,320 healthcare provider who was able to take that information and 116 00:05:19,360 --> 00:05:22,280 interpret it a little bit and work with it instead of kind of 117 00:05:22,280 --> 00:05:24,560 me just like doing my job as the patient. 118 00:05:24,560 --> 00:05:27,240 I was explaining what I felt. She asked me what I felt. 119 00:05:27,440 --> 00:05:30,680 I said what I felt, but unfortunately obviously I was 120 00:05:30,680 --> 00:05:34,200 hitting a wall and that's something that happens with 121 00:05:34,200 --> 00:05:36,120 patients all the time. They'll be asked what are you 122 00:05:36,120 --> 00:05:39,320 feeling and they will say words which result in them just 123 00:05:39,320 --> 00:05:42,600 hitting a an impasse where they're not saying the right 124 00:05:42,600 --> 00:05:45,400 things and that's messing up the the whole process in terms of 125 00:05:45,400 --> 00:05:47,520 investigation and appropriate medical management. 126 00:05:47,800 --> 00:05:51,160 And this is a huge issue for the hyper mobile population. 127 00:05:51,280 --> 00:05:55,040 So if we go to talking a bit about what I see in clinic and 128 00:05:55,040 --> 00:05:56,800 what I hear from patients in clinic. 129 00:05:57,320 --> 00:05:59,400 So now I'm going to share a funny story and it's actually 130 00:05:59,400 --> 00:06:01,880 happened, I think it was about four months ago when I was in 131 00:06:01,880 --> 00:06:05,200 clinic and I have three patients come in on one day and say the 132 00:06:05,200 --> 00:06:07,280 same thing. And these patients are not 133 00:06:07,280 --> 00:06:09,640 relatives, they're not friends as far as I'm aware. 134 00:06:09,640 --> 00:06:11,920 And I don't think they've ever spoken to each other outside of 135 00:06:11,920 --> 00:06:14,440 clinic. But it was so uncanny how they 136 00:06:14,440 --> 00:06:17,560 all said the exact same thing. So I start off most of my 137 00:06:17,560 --> 00:06:19,960 appointments saying, you know, how are you feeling today 138 00:06:20,120 --> 00:06:22,160 because that's really, really important with hyper mobile 139 00:06:22,160 --> 00:06:23,360 patients. It's important for everyone. 140 00:06:23,360 --> 00:06:25,440 But I want to know how the patient's feeling today right 141 00:06:25,440 --> 00:06:28,200 here, right now and how they felt since I've seen them, both 142 00:06:28,240 --> 00:06:31,760 the good and the bad. So the patients came in the 143 00:06:31,760 --> 00:06:33,980 first patient and I said, how are you feeling today? 144 00:06:34,260 --> 00:06:36,500 And that patient said, I feel like an alien. 145 00:06:36,980 --> 00:06:40,420 I was like, OK And. And what does tell me more? 146 00:06:40,660 --> 00:06:41,980 That's usually I'll say tell me more. 147 00:06:41,980 --> 00:06:43,740 Actually, it's usually the phrase I go with because I just, 148 00:06:43,980 --> 00:06:47,580 I want to give that person space to tell me more about what 149 00:06:47,580 --> 00:06:50,260 they're feeling. I think that giving people space 150 00:06:50,260 --> 00:06:52,740 is so important in a medical context so that they can 151 00:06:52,980 --> 00:06:55,940 literally present to you what their experience is because that 152 00:06:55,940 --> 00:06:58,220 helps me as a clinician. So I said tell me more. 153 00:06:58,220 --> 00:07:00,620 And then that patient went on to explain, you know, I'm feeling 154 00:07:00,620 --> 00:07:02,980 this in my neck or I'm feeling this in my shoulder. 155 00:07:02,980 --> 00:07:05,540 I'm feeling this today. And This is why, you know, I 156 00:07:05,540 --> 00:07:06,820 feel confused about this. And. 157 00:07:06,820 --> 00:07:08,940 And they gave that explanation. And that was, you know, that 158 00:07:08,940 --> 00:07:12,060 appointment was that the next patient came in and I again 159 00:07:12,060 --> 00:07:15,220 said, how are you feeling today? And they said, I feel like an 160 00:07:15,220 --> 00:07:17,140 alien. And I said, you know what? 161 00:07:17,140 --> 00:07:18,940 That's so weird. You're not the first person to 162 00:07:18,940 --> 00:07:21,340 say that today. And then we went on, you know, 163 00:07:21,340 --> 00:07:22,660 did the same thing. Tell me more. 164 00:07:22,660 --> 00:07:24,740 And they explained to me more about what they were feeling. 165 00:07:25,340 --> 00:07:27,500 And then the third patient came in, of course it was the same 166 00:07:27,500 --> 00:07:28,700 thing. How are you feeling today? 167 00:07:28,700 --> 00:07:30,820 I feel like an alien. And I was like, this is, this is 168 00:07:30,820 --> 00:07:34,220 very strange. But it really emphasized to me 169 00:07:34,220 --> 00:07:38,540 the different lived experience of living in a hyper mobile body 170 00:07:39,260 --> 00:07:41,700 and something that I get a lot of positive feedback on or the 171 00:07:41,700 --> 00:07:45,940 analogies that I use to describe what hyper mobility feels like. 172 00:07:46,940 --> 00:07:49,180 So I describe it as being built differently. 173 00:07:49,460 --> 00:07:51,020 It's literally a different build. 174 00:07:51,020 --> 00:07:54,740 Connective tissue is such an integral part of every system in 175 00:07:54,740 --> 00:07:56,500 the human body. Your neurological system, your 176 00:07:56,500 --> 00:07:58,700 digestive system, your cardiovascular system, your 177 00:07:58,700 --> 00:08:01,660 muscles and joints. It is everywhere, and not only 178 00:08:01,660 --> 00:08:04,860 is it everywhere, it runs between systems. 179 00:08:04,860 --> 00:08:08,990 It's so pervasive and I think of hyper mobile individuals as 180 00:08:08,990 --> 00:08:12,270 almost being like a different build in a video game. 181 00:08:12,270 --> 00:08:14,870 And again, I'm not saying this in any way that that we are not 182 00:08:14,950 --> 00:08:17,990 the same in terms of like being human, Of course we are. 183 00:08:18,190 --> 00:08:21,070 But there is a different experience that giving that 184 00:08:21,070 --> 00:08:23,790 having hyper mobile connective tissue gives you. 185 00:08:23,950 --> 00:08:27,190 These are people who do literally, in my opinion, both 186 00:08:27,470 --> 00:08:30,830 emotionally and physically feel things differently. 187 00:08:30,870 --> 00:08:33,350 And it makes sense when you look at some of the science behind 188 00:08:33,350 --> 00:08:34,950 it, which we'll talk about in a few minutes. 189 00:08:35,030 --> 00:08:37,429 But I I think of being a different character are building 190 00:08:37,429 --> 00:08:40,270 a video game and I don't know if this is going to make me seem 191 00:08:40,270 --> 00:08:42,110 really nerdy. I don't know if any of you ever 192 00:08:42,110 --> 00:08:45,790 play ever play games like Skyrim or I don't know different 193 00:08:45,790 --> 00:08:48,870 different RPG type games. But I think of being hyper 194 00:08:48,870 --> 00:08:53,390 mobile as a character build in a video game where you are, 195 00:08:53,590 --> 00:08:56,190 unfortunately you're a bit less sturdy, so you take damage a bit 196 00:08:56,190 --> 00:08:59,590 more differently. However, it's still playable in 197 00:08:59,590 --> 00:09:02,030 a lot of situations, You just have to find the right way to 198 00:09:02,030 --> 00:09:04,180 navigate the game. You have to make sure that 199 00:09:04,180 --> 00:09:05,580 you're that really strategic player. 200 00:09:05,580 --> 00:09:07,660 You have to make sure that you meet the right people along your 201 00:09:07,660 --> 00:09:10,260 journey and you have to make sure that you're able to kind of 202 00:09:10,380 --> 00:09:13,220 level up your character appropriately and identify any 203 00:09:13,220 --> 00:09:14,460 issues which are going to come your way. 204 00:09:14,660 --> 00:09:17,620 Now if that's too nerdy, here's another analogy. 205 00:09:17,820 --> 00:09:21,420 I think of hyper mobile people like they are Goldilocks. 206 00:09:21,420 --> 00:09:25,380 So in Goldilocks and the three Bears, of course Goldilocks is 207 00:09:25,820 --> 00:09:29,860 the young girl who's going to the Bears cottage to have some 208 00:09:29,860 --> 00:09:32,260 porridge. And the first bowl of porridge 209 00:09:32,260 --> 00:09:35,620 is too hot, the second one is too cold and the third one is 210 00:09:35,620 --> 00:09:37,940 just right. And this is part of my 211 00:09:38,740 --> 00:09:41,820 frustration in terms of some of the research to be entirely 212 00:09:41,820 --> 00:09:44,940 honest, that's done for this hyper mobile population is that 213 00:09:44,940 --> 00:09:47,860 I think that a lot of the standard treatment interventions 214 00:09:47,860 --> 00:09:50,340 in terms of manual therapy and and different things like that, 215 00:09:50,540 --> 00:09:52,780 they work. But they work when they're done 216 00:09:52,900 --> 00:09:56,780 correctly and done precisely. And it really stresses me in my 217 00:09:56,780 --> 00:10:00,860 clinical work because the the line between the correct amount 218 00:10:00,860 --> 00:10:04,180 of treatment and overtreatment is so fine. 219 00:10:04,420 --> 00:10:08,300 It's like you're cooking a steak or whatever. 220 00:10:08,300 --> 00:10:10,620 I'd pick something that's very precise to cook broccoli, 221 00:10:10,820 --> 00:10:12,540 Broccoli. I'm always making mushy broccoli 222 00:10:12,540 --> 00:10:15,040 by accident, but that that's me overcooking the broccoli, right? 223 00:10:15,040 --> 00:10:19,200 So you have to be so careful in your timing and in your dosage 224 00:10:19,240 --> 00:10:22,320 and in your clinical decision making to make sure that not 225 00:10:22,320 --> 00:10:25,880 only are you giving that patient the correct treatment 226 00:10:25,880 --> 00:10:28,720 intervention, but are you giving them the correct treatment 227 00:10:28,720 --> 00:10:33,160 intervention in the correct dose for them on that day. 228 00:10:33,560 --> 00:10:36,360 And it changes and that variability is hard to deal 229 00:10:36,360 --> 00:10:38,680 with. It's stressful and it makes the 230 00:10:38,680 --> 00:10:41,660 work really, really challenging. But I think of all my patients 231 00:10:41,660 --> 00:10:44,820 like Goldilocks because that helps, it helps me to understand 232 00:10:44,820 --> 00:10:46,900 them and I think sometimes when I share that analogy with them, 233 00:10:46,900 --> 00:10:48,820 it helps them to understand themselves. 234 00:10:48,980 --> 00:10:53,420 Moving on, I will also think of patients like they are hyper 235 00:10:53,420 --> 00:10:55,340 mobile people. You know, this whole community, 236 00:10:55,340 --> 00:10:59,260 I think of us like we are luxury sports cars. 237 00:10:59,260 --> 00:11:02,260 So I don't know much about cars, but I know if you have like a 238 00:11:02,260 --> 00:11:06,980 very, very fancy car, you can't just drive it off road. 239 00:11:07,420 --> 00:11:09,020 You have to get it special gasoline. 240 00:11:09,020 --> 00:11:10,860 You have to have like, special maintenance for it. 241 00:11:11,100 --> 00:11:13,660 You have to have it driven by someone who knows how to drive 242 00:11:13,660 --> 00:11:15,940 it. And I think that like we are all 243 00:11:15,940 --> 00:11:18,580 born into a body. And so many people, especially 244 00:11:18,580 --> 00:11:21,290 those with normal connective tissue, they just do what they 245 00:11:21,290 --> 00:11:23,690 want. They go out, they drink, they 246 00:11:23,690 --> 00:11:26,650 like, you know, they, they work that 9:00 to 5:00 and they play, 247 00:11:26,850 --> 00:11:29,610 they work hard and they play harder and they're able to do 248 00:11:29,610 --> 00:11:32,370 all this stuff. And for people, most people, if 249 00:11:32,370 --> 00:11:34,690 not all people who have hypermobile connective tissue 250 00:11:34,690 --> 00:11:37,610 and who specifically have HSD and Hdds, you have to be 251 00:11:37,610 --> 00:11:41,510 strategic in how you do things. You if you do a little bit too 252 00:11:41,510 --> 00:11:44,510 much of anything, you get punished much more harshly. 253 00:11:44,710 --> 00:11:48,590 You know that if you drive that fancy Italian sports car off 254 00:11:48,590 --> 00:11:52,430 road, it's going to fall apart. It has to be driven on the the 255 00:11:52,430 --> 00:11:55,510 right racetrack with the right setup and the right gasoline by 256 00:11:55,510 --> 00:11:58,790 the right driver in the right weather and that's kind of what 257 00:11:58,790 --> 00:12:00,830 being hyper mobile is like in my opinion. 258 00:12:00,830 --> 00:12:03,870 So again, it's these are not necessarily like delicate 259 00:12:03,870 --> 00:12:05,390 people. I think there's this idea that, 260 00:12:05,630 --> 00:12:08,870 you know, these are patients where if you breathe too heavily 261 00:12:08,870 --> 00:12:11,230 near them, they'll break. And and that's not true at all. 262 00:12:11,230 --> 00:12:14,750 These are some of like this toughest patients I've ever seen 263 00:12:14,750 --> 00:12:17,790 in terms of pain tolerance and in terms of what they deal with. 264 00:12:17,790 --> 00:12:23,230 Like these people are tough, but they need to be treated in the 265 00:12:23,230 --> 00:12:27,070 way which is right for them and their unique hyper mobile body. 266 00:12:27,550 --> 00:12:29,950 And that again, takes a specific kind of understanding. 267 00:12:29,950 --> 00:12:35,170 And This is why I am so grateful for things like my online 268 00:12:35,170 --> 00:12:37,570 membership, hyperbole, HQ, Discord, where people are able 269 00:12:37,570 --> 00:12:40,010 to kind of come together and talk about this stuff because it 270 00:12:40,010 --> 00:12:42,050 helps people realize they're they're not being high 271 00:12:42,050 --> 00:12:44,570 maintenance, they're not being demanding, they are just a bit 272 00:12:44,570 --> 00:12:46,410 different. And that's OK. 273 00:12:46,530 --> 00:12:48,610 Moving on. The final analogy I want to 274 00:12:48,610 --> 00:12:52,730 focus on is that being hyper mobile is like walking on a 275 00:12:52,850 --> 00:12:57,690 tightrope, except your tightrope is so much narrower than 276 00:12:57,690 --> 00:12:59,250 everyone else's. So the people with normal 277 00:12:59,250 --> 00:13:01,900 connective tissue, maybe their tight rope isn't even a rope, 278 00:13:01,900 --> 00:13:03,740 maybe it's like a 30 centimeter wide plank. 279 00:13:03,980 --> 00:13:07,020 But the hyper mobile people, they're getting like a 1 280 00:13:07,020 --> 00:13:12,860 centimeter wide rope above like a 50 meter Canyon filled with 281 00:13:12,860 --> 00:13:15,620 crocodiles at the bottom. It is really stressful and 282 00:13:15,620 --> 00:13:18,820 really challenging because typically hyperbole, people know 283 00:13:19,060 --> 00:13:22,500 that if they do too much of something and what too much is 284 00:13:22,500 --> 00:13:25,300 and what the something is can vary day-to-day. 285 00:13:25,750 --> 00:13:29,070 But if they do too much of something, they are going to get 286 00:13:29,070 --> 00:13:32,670 disproportionately punished. And it's not fair and it's hard. 287 00:13:32,670 --> 00:13:34,830 And it means that these patients do need to be a bit more 288 00:13:34,830 --> 00:13:37,150 thoughtful and how they care for themselves and what they do, and 289 00:13:37,150 --> 00:13:40,150 they need to be better at listening to their bodies, which 290 00:13:40,150 --> 00:13:42,350 is hard, and we'll get into that in a second. 291 00:13:42,510 --> 00:13:46,390 But it's you, you pay a higher price for making a mistake and 292 00:13:46,710 --> 00:13:49,420 it's challenging. And I think it's also hard and 293 00:13:49,620 --> 00:13:52,620 for the medical system as well to understand that these people, 294 00:13:52,780 --> 00:13:54,940 you have to be really, really careful with these patients 295 00:13:54,940 --> 00:13:57,340 because if you make the wrong clinical decision, there's going 296 00:13:57,340 --> 00:13:59,500 to be potentially bigger consequences for that. 297 00:13:59,780 --> 00:14:01,980 And of course we have problems with these patients being 298 00:14:02,060 --> 00:14:05,120 unidentified and and not knowing themselves and so on, but the 299 00:14:05,160 --> 00:14:09,120 idea of having a tightrope and having to walk it, that's 300 00:14:09,120 --> 00:14:12,040 something which at least helps me understand my hyper mobile 301 00:14:12,040 --> 00:14:14,880 body and how I navigate my daytoday life. 302 00:14:14,880 --> 00:14:17,440 So I hope you found those analogies helpful. 303 00:14:18,040 --> 00:14:21,160 I think sometimes that having a lens through which to view a 304 00:14:21,160 --> 00:14:24,040 lived experience can be a really, really useful tool 305 00:14:24,640 --> 00:14:26,800 because it just helps you to make sense of things. 306 00:14:26,800 --> 00:14:29,720 And hopefully it helps you to feel at home in in your hyper 307 00:14:29,720 --> 00:14:32,360 mobile body. Because that feeling of not 308 00:14:32,360 --> 00:14:37,590 being at home of everything, feeling just out of place, it's 309 00:14:37,750 --> 00:14:41,630 it's confusing and it's bewildering and it's 310 00:14:41,830 --> 00:14:46,630 unbelievably stressful and and of course it's anxiety inducing 311 00:14:46,830 --> 00:14:50,030 because how could anyone not be anxious when things feel so 312 00:14:50,030 --> 00:14:53,990 weird and no one is helping you understand why and you feel 313 00:14:53,990 --> 00:14:56,430 alone. So anyways, I hope that that 314 00:14:56,430 --> 00:14:58,430 helps some of this all makes sense to you. 315 00:14:58,870 --> 00:15:01,430 If I missed an analogy, let me know. 316 00:15:01,430 --> 00:15:04,950 Send me in some feedback. Maybe do a post on a video if I 317 00:15:04,950 --> 00:15:07,430 post from this, comment below if you're watching this video 318 00:15:07,430 --> 00:15:10,510 online. But I I love, I love analogies 319 00:15:10,590 --> 00:15:13,110 because I think that they help people understand what's going 320 00:15:13,110 --> 00:15:16,790 on in their body. Now finally today we are also 321 00:15:16,790 --> 00:15:18,830 going to talk about weird feelings. 322 00:15:18,910 --> 00:15:21,430 And by weird feelings I'll use an example. 323 00:15:21,630 --> 00:15:25,550 So have you ever just felt like you've like, poured acid on a 324 00:15:25,550 --> 00:15:28,510 random part of your forearm? That doesn't make sense and you 325 00:15:28,510 --> 00:15:29,830 haven't. And and it's fine. 326 00:15:29,830 --> 00:15:31,870 There's nothing visible there. But it feels weird. 327 00:15:32,150 --> 00:15:34,550 Well, that happened to me a few months ago. 328 00:15:35,270 --> 00:15:37,270 So if we go back again, like, I don't know, two months or 329 00:15:37,270 --> 00:15:39,590 something like that. There was a day, for example, 330 00:15:39,590 --> 00:15:42,150 where it felt like I poured acid on my forearm. 331 00:15:42,510 --> 00:15:44,870 And so I I looked at, I stopped, you know, I pulled my sleeve up. 332 00:15:44,870 --> 00:15:46,430 It was still kind of cold in the UK. 333 00:15:46,790 --> 00:15:48,830 And I pulled my sleeve up and I looked at my forearm and I was 334 00:15:48,830 --> 00:15:50,190 like, what did I do? What's going on there? 335 00:15:50,430 --> 00:15:54,520 But there's nothing there luckily because I understand 336 00:15:54,680 --> 00:15:57,080 small fiber neuropathy and we'll explain that in a second. 337 00:15:57,080 --> 00:15:59,080 I was like, oh, it's probably just my nerves being weird, 338 00:15:59,160 --> 00:16:01,720 whatever. And of course we'll talk a bit 339 00:16:01,720 --> 00:16:03,960 about correct clinical management and correct 340 00:16:04,520 --> 00:16:06,920 monitoring of that from a patient perspective in a second 341 00:16:06,920 --> 00:16:09,120 because we do want to keep an eye on symptoms in the body. 342 00:16:09,120 --> 00:16:11,520 The hyper mobile bodies get weird sometimes and small fiber 343 00:16:11,520 --> 00:16:15,920 neuropathy is one of those ways. Now small fibers are part of 344 00:16:15,920 --> 00:16:18,080 your nervous system and they specifically contribute to the 345 00:16:18,080 --> 00:16:22,200 sensation of pain and of temperature and a couple other 346 00:16:22,200 --> 00:16:23,480 things. But the main things are pain and 347 00:16:23,480 --> 00:16:28,320 temperature and it's very common for hyper mobile patients to 348 00:16:28,320 --> 00:16:30,040 experience small fiber neuropathy. 349 00:16:30,040 --> 00:16:33,400 It is a common feature in this patient population. 350 00:16:33,520 --> 00:16:37,440 What I find in my clinical work is that unlike with patients for 351 00:16:37,440 --> 00:16:40,440 example who are diabetic and they'll experience small fiber 352 00:16:40,440 --> 00:16:43,640 neuropathy, but they'll have it typically in kind of a pattern. 353 00:16:43,640 --> 00:16:45,680 So it might be in like their hands or their feet or it'll 354 00:16:45,800 --> 00:16:49,640 it'll present in a way that it makes sense in terms of what we 355 00:16:49,640 --> 00:16:52,560 know about about nerves and how small fibrinopathy affects them. 356 00:16:52,800 --> 00:16:55,720 What I find very interesting in hypermobile patients is that 357 00:16:55,800 --> 00:16:58,520 they will get this like seemingly random small 358 00:16:58,520 --> 00:17:00,880 fiberneuropathy. So it'll be like a transient 359 00:17:01,440 --> 00:17:04,599 little presentation on a patch of skin, which doesn't make 360 00:17:04,599 --> 00:17:06,359 sense from a dermatomal perspective. 361 00:17:06,359 --> 00:17:09,319 So it doesn't make sense in terms of like a pattern that we 362 00:17:09,319 --> 00:17:12,000 can use to understand why the nerves are being affected. 363 00:17:12,240 --> 00:17:15,760 It'll just be like the most weird little presentation. 364 00:17:15,760 --> 00:17:19,280 It'll typically last for a few hours or a day and it'll go 365 00:17:19,280 --> 00:17:21,640 away. And this happens in my opinion, 366 00:17:21,640 --> 00:17:25,040 simply because the small fibers, just like all the rest of the 367 00:17:25,040 --> 00:17:27,440 peripheral nervous system, they have a connective tissue 368 00:17:27,440 --> 00:17:30,320 component to them. So unlike large fibers which 369 00:17:30,320 --> 00:17:33,360 have a myelin sheath which is a different structure, the small 370 00:17:33,360 --> 00:17:36,000 fibers have a connective tissue. They still have a connective 371 00:17:36,000 --> 00:17:38,320 tissue wrapping just like the rest of the nervous system. 372 00:17:38,480 --> 00:17:42,160 And my hypothesis is that in hyper mobile people, sometimes 373 00:17:42,160 --> 00:17:45,710 that connective tissue sheath can be disturbed or irritated in 374 00:17:45,710 --> 00:17:47,910 such a way that the nerve starts to kind of misfire and send 375 00:17:47,910 --> 00:17:52,110 weird signals. And that's why we see that that 376 00:17:52,110 --> 00:17:55,750 strange nervy presentation occasionally and typically it 377 00:17:55,750 --> 00:17:58,590 will resolve. Now quick note, if you're 378 00:17:58,590 --> 00:18:01,310 someone at home who's experiencing that, it's really 379 00:18:01,310 --> 00:18:04,590 important that you clock it. So I recommend that patients, 380 00:18:04,590 --> 00:18:07,650 they make a note of it, they've had this there, you know, 381 00:18:07,650 --> 00:18:10,610 record, make a mental note or write it down or tell a friend, 382 00:18:10,690 --> 00:18:12,330 tell your medical doctor, whatever. 383 00:18:12,570 --> 00:18:15,090 And then if it doesn't go away or if it gets worse, of course 384 00:18:15,090 --> 00:18:17,250 at that point then investigations need to be done. 385 00:18:17,250 --> 00:18:20,370 But very, very commonly this will resolve within a day, if 386 00:18:20,370 --> 00:18:23,810 not a few hours. And to go back to another story 387 00:18:23,810 --> 00:18:28,850 from myself, I remember I was about 18 and I was at Fairview 388 00:18:28,850 --> 00:18:32,720 Mall in Toronto actually with my mom and we were shopping. 389 00:18:32,720 --> 00:18:35,680 And I still got a bit sad about this day because I I caused a 390 00:18:35,680 --> 00:18:38,200 bit of, I don't want to say like a scene, but I was in so much 391 00:18:38,200 --> 00:18:40,880 discomfort. So we were walking around the 392 00:18:40,880 --> 00:18:43,760 mall and it felt like there was a piece of glass in my jeans. 393 00:18:43,880 --> 00:18:47,200 And this resulted eventually in me, like going to the loo, 394 00:18:47,200 --> 00:18:50,080 taking the jeans off, searching carefully, trying to find a 395 00:18:50,080 --> 00:18:53,120 loose thread or a piece of something in there that was 396 00:18:53,160 --> 00:18:55,170 irritating me. And there was nothing there. 397 00:18:55,370 --> 00:18:58,450 And I felt like I was losing my mind. 398 00:18:58,610 --> 00:19:01,530 And I wish I'd understand at the time that having hyperbole, 399 00:19:01,530 --> 00:19:04,930 connective tissue can just make you sometimes feel things a bit 400 00:19:04,930 --> 00:19:07,130 differently in your skin. Because I would have been like, 401 00:19:07,170 --> 00:19:10,210 oh, it's just my nerves being weird for a second, that's OK. 402 00:19:10,810 --> 00:19:12,970 But instead, of course, it was really frustrating. 403 00:19:13,590 --> 00:19:16,510 I had no idea what was going on. It took away from that day with 404 00:19:16,550 --> 00:19:18,670 my mom, which is, you know, which made a bit sad because 405 00:19:18,670 --> 00:19:20,750 it's it's always nice to have a fun day out shopping with, you 406 00:19:20,750 --> 00:19:22,430 know, your mom or someone you're close to. 407 00:19:22,670 --> 00:19:25,790 And it did eventually result in me buying a new pair of 408 00:19:25,790 --> 00:19:29,430 trousers, which I wasn't sure if they helped or not at the time. 409 00:19:29,430 --> 00:19:32,510 The symptoms did resolve with and I think that I think by that 410 00:19:32,510 --> 00:19:35,470 evening I was fine, certainly by that morning, by the next 411 00:19:35,470 --> 00:19:39,550 morning, But that was something which I I wish I'd had the 412 00:19:39,550 --> 00:19:42,670 ability to understand what was going on at the time because I 413 00:19:42,670 --> 00:19:46,710 genuinely felt like I was losing my mind because I was, you know, 414 00:19:46,710 --> 00:19:50,270 there was nothing there. But I felt this like awful 415 00:19:50,750 --> 00:19:55,870 pinpoint like pain on my inner thigh, which made no sense. 416 00:19:55,910 --> 00:20:00,070 Anyways, I hope that a little bit of this description of small 417 00:20:00,070 --> 00:20:02,830 fiber neuropathy will help some of you if you've experienced 418 00:20:02,830 --> 00:20:05,710 that it is more common in the hands and the feet, simply 419 00:20:05,710 --> 00:20:08,670 because of course those are the most peripheral bits of tissue 420 00:20:08,670 --> 00:20:11,190 that we have. And it's harder for our bodies 421 00:20:11,190 --> 00:20:15,310 to adequately supply are the outermost parts of us simply 422 00:20:15,310 --> 00:20:16,910 because they're further away from your heart. 423 00:20:16,910 --> 00:20:18,950 It takes more effort to maintain those tissues. 424 00:20:18,950 --> 00:20:23,150 And that's why sometimes patients will have small small 425 00:20:23,150 --> 00:20:26,430 fiber neuropathy issues in their hands and feet because they are 426 00:20:26,430 --> 00:20:29,470 furthest away. However, it can happen anywhere 427 00:20:29,470 --> 00:20:31,590 and with hypermobile patients that I see, it tends to happen 428 00:20:31,590 --> 00:20:34,150 in like a random place and resolve within a day or two or 429 00:20:34,150 --> 00:20:36,230 or change certainly. So it'll kind of move around. 430 00:20:36,390 --> 00:20:40,420 Again, if this is you, please do speak to your medical doctor 431 00:20:40,420 --> 00:20:41,980 about this. Just so that it's clocked and 432 00:20:41,980 --> 00:20:44,540 reported and just so that if it's progressing or changing in 433 00:20:44,540 --> 00:20:47,860 a way which is suggestive of another condition, because that 434 00:20:47,860 --> 00:20:50,260 can happen, we need to make sure it gets identified. 435 00:20:50,380 --> 00:20:52,980 But if you're someone where it's like kind of normal for you and 436 00:20:52,980 --> 00:20:54,900 you're making sure that you're safe, I hope this helps you 437 00:20:54,900 --> 00:20:57,620 understand your body. Now, the final thing that we'll 438 00:20:57,620 --> 00:21:00,260 be talking about today is inter reception. 439 00:21:00,340 --> 00:21:04,140 So inter Reception is incredibly underappreciated. 440 00:21:04,660 --> 00:21:06,740 But first, to understand Inter Reception, we're going to talk 441 00:21:06,740 --> 00:21:09,700 about extra reception. So extra reception refers to 442 00:21:09,700 --> 00:21:11,820 your five senses. So what is it? 443 00:21:11,820 --> 00:21:14,420 Sight, smell, touch, hearing and taste. 444 00:21:14,740 --> 00:21:17,140 And that's how we process information about our 445 00:21:17,140 --> 00:21:19,540 environment and the the world that we're in. 446 00:21:19,540 --> 00:21:22,940 Basically, it's how I know what's going on in what's around 447 00:21:22,940 --> 00:21:26,340 my body right now. Interception is how you feel 448 00:21:26,340 --> 00:21:30,620 what's going on inside your body and it refers to the 449 00:21:30,620 --> 00:21:34,420 phenomenological experience of inner feelings, which just means 450 00:21:34,420 --> 00:21:37,820 it's a subjective experience and it's the collective experience 451 00:21:37,820 --> 00:21:39,580 of all that information that you get. 452 00:21:39,780 --> 00:21:42,950 Now what I find for people who are hyper mobile is that they 453 00:21:42,950 --> 00:21:46,390 struggle with interception. And to kind of go back to the 454 00:21:46,390 --> 00:21:49,590 very beginning of this episode, that story where I was talking 455 00:21:49,590 --> 00:21:52,110 about my shoulder feeling homeless and denying that it 456 00:21:52,110 --> 00:21:55,630 felt unstable even though maybe it did at the time, That's an 457 00:21:55,630 --> 00:21:58,030 example of someone who is probably struggling with 458 00:21:58,030 --> 00:22:02,070 interception. Feeling things is hard as I like 459 00:22:02,070 --> 00:22:05,110 to say, and it's especially hard when you're hyper mobile. 460 00:22:05,700 --> 00:22:10,060 And my hypothesis for why that is the case is that connective 461 00:22:10,060 --> 00:22:12,540 tissue sheath around the nerve. So we spoke about that briefly 462 00:22:12,540 --> 00:22:14,940 before, but all your peripheral nerves have a connective tissue 463 00:22:14,940 --> 00:22:17,490 sheath around them and you can think of it like the wrapping 464 00:22:17,490 --> 00:22:19,370 around a wire, like the plastic wrapping. 465 00:22:19,530 --> 00:22:21,490 We also have connective tissue inside them and throughout them. 466 00:22:21,490 --> 00:22:25,490 But anyways, it makes sense that if that connective tissue is 467 00:22:25,570 --> 00:22:28,530 built differently, you might feel things differently. 468 00:22:28,530 --> 00:22:31,770 And for me, from a physical perspective, that kind of 469 00:22:31,770 --> 00:22:34,930 explains a little bit of this different lived experience. 470 00:22:35,170 --> 00:22:39,290 Of course, we can start to discuss how neurodivergence and 471 00:22:39,330 --> 00:22:42,410 the high prevalence of that in hyper mobile patients starts to 472 00:22:42,410 --> 00:22:45,450 contribute to feeling things differently, but that's a topic 473 00:22:45,450 --> 00:22:48,490 for another episode. Thank you so much for joining me 474 00:22:48,490 --> 00:22:50,850 today. Please do be sure to check out 475 00:22:50,850 --> 00:22:54,090 the Discord and keep an eye out for new guides and different 476 00:22:54,090 --> 00:22:55,050 types of things that I'm offering. 477 00:22:55,050 --> 00:22:57,850 I'm really excited with some of the things that are coming your 478 00:22:57,850 --> 00:23:01,250 way this autumn and I'll share more details on that soon. 479 00:23:01,650 --> 00:23:03,490 Take care and see you next time.