bebe127 Posted March 18, 2013 Report Posted March 18, 2013 Question for you all (please don't kick me!)This past weekend our family took a little beach vacay because my husband had a business meeting out of town and we always like to go with him ( I don't like being at home without him near, so we always find an excuse to go with him).Here's my question: We were laying by the pool (here's the part where I don't want anyone to virtually kick me ) I turned over onto my stomach for about 15 minutes to sun my backside. Two days later the bottom of my ribs felt as though they were bruised (no visible bruising), but I literally felt like I'd been punched or kicked in the ribs. I felt pain at the touch. It was like I had done a bazillion crunches, only higher up. Still hurts today. Just wondering if anyone else has experienced this.I also used to experience pain in my elbow joints when I used to ride my bicycle (a while ago!). I would always attribute it to the pressure I was putting on my elbows while riding and holding the handlebars, so I would always shake my arms out during the ride, or try to ride with my elbows slightly bent. I since don't ride anymore. Many times when I attempt to do a bit of yoga for about 20 minutes, the next day or two after, I feel as though I've been run over by a truck. Is this normal??? As of late, I haven't even tried to exercise, even though I know how important it is, because I just know I'm going to feel so much worse the day or two after. Shall I just soldier on?? Am I perhaps just out of shape and need to slowly get back into exercising and maybe that will diminish the soreness??Another weird question for those of you that have the willingness and energy to run or walk on a regular basis. I used to run 5 miles a day (haven't in years but just wondering anyway) and when I would run my thighs would get so itchy. I would be running and scratching and come home looking like I'd been mauled by a wild cat. Wondering if anyone has ever experienced this as well and can shed some light.Thanks in advance Hope you all are well and hoping for symptom-free days for all P.S. I do bruise easily. I always say that I bruise like a banana! Quote
ophelialit Posted March 18, 2013 Report Posted March 18, 2013 Hi bebe127,I'm sitting in the DC area watching it sleet at 28 degrees, so I MIGHT kick you! Ha! I do get the creepy bruised feeling from time to time--especially on my upper arms, but I have no idea what causes it. However, the fatigue and insane burning itchiness brought on by exercise? THAT is exercise urticaria...a kind of allergic reaction that is VERY common among those of us with MCAS. it can apparently become quite serious, but mine is usually limited to just the skin issues. I used to scratch the heck out of my legs after running or mountain biking--any activity that was particularly jarring, but now I just take a break and let it pass. It usually diminishes with more regular exercise....From the Merck Manual:Exercise Uritcaria :This condition was first distinguished in 1980. People with exercise urticaria (EU) experience hives, itchiness, shortness of breath and low blood pressure five to 30 minutes after beginning exercise. Jogging is the most common exercise to cause EU, but it is not induced by a hot shower, fever, or with fretfulness. This differentiates EU from cholinergic urticaria. Quote
Katybug Posted March 18, 2013 Report Posted March 18, 2013 Hi there! For the "bruised" feeling, trying seeing if allodynia fits the bill. I have this over every inch of my skin. Really light touch like a feather doesn't hurt and really hard touch doesn't hurt, but, medium touch like a hug or if I'm not careful when I am soaping up in the shower makes it feel like I have a really bad bruise...even in my scalp. Some areas are worse than others, around my rib cage being one of them.http://en.wikipedia.org/wiki/Allodynia Quote
boymommy3 Posted March 19, 2013 Report Posted March 19, 2013 This itching thing I get on my legs A LOT from walking/jogging!!!!! I have done this for years....way before POTS. Someone posted on another thread that I was on that I could some of my symptoms sounded familiar to MCAS, but I tell ya......that stuff is soooo confusing to me! Quote
azmusiclover Posted March 19, 2013 Report Posted March 19, 2013 Bebe, I get the bruised feeling often. I joke with everyone that I bruise if I get breathed on. I hate the deep in the body bruising feeling though. I currently have it in my back on the upper right side of my ribs after sitting in the massage chair at the pedicure place and having the chair massage me. I think it bruised me. LOL. I don't get the itching after exercise, but I do get it after heat exposure and I will often wake with scratches on my body from itching during the night. It's been less since I have been taking my claritin/benadryl combo but they don't think MCAS for me.... I am still thinking of pursuing it outside of Mayo.... It is all confusing and just when you think you have something slightly figured out, something else pops up or happens! Oh, and I won't kick you. It was in the 90s last weekend and beautiful low 80s this week! Quote
bebe127 Posted March 19, 2013 Author Report Posted March 19, 2013 Thank you all for your responses! Just one more thing some of us have in common Ophilialit: Sorry about the weather up there!! I absolutely abhor cold weather. I was born and raised in South Florida, good thing the heat doesn't really bother me too much. I'm glad I asked about the itching. I wasn't going to, it was kind of an afterthought. I will look up exercise urticaria and read up on it. Coincidentally, I had just received papers on MCAS from a contractor with my health insurance and it had a picture of urticaria. Interestingly enough though, this picture was of someone's legs with bright red dots all over. I never get that, so I threw out the whole urticaria symptom. I've always itched after doing moderate exercise like running or walking. I don't even have to be sweating too much. It hasn't happened in a long time because I don't run/walk any more, and when it did happen, it was way before I was ever sick or dx with anything. I don't get marks on my skin, other than my scratch marks, and I've never had hives or anything like that. My skin doesn't mottle and I don't get blood pooling either. I have had other skin conditions over the years though, not related to exercise. I will definately look it up. Thanks again.Katybug: Interesting. I don't think I have that though, not when people touch me at least. My hubs will give me a "love squeeze" on the leg sometimes and leave a four-finger bruise. I always try to be careful, but many times I notice bruising on my legs especially and they seem to come out of nowhere. I can never remember when or where I bumped myself. My mother was the same with the easy bruising. You should see my arms after I get blood taken! The bruised feeling is just weird, it's like I put pressure on an area and later it feels all bruised; it's not even hard pressure. Weird. Thanks!!Boymommy3: Thanks for your response. It's kinda nice not being alone in this I used to run with my MIL and she never experienced the itching. I just thought it was due to sweating or something. Hasn't happened in a long time since I don't do a lot of exercise anymore. I have never gotten bumps or spots or anything though. You know what else?? In thinking about the whole itching thing, does your skin ever itch when you are in a hot tub and your skin is up against the jets? We have a hot tub and I can't stand the bubbles, they make my skin itch so bad, I could scratch the skin right off. In fact, when we were having the pool/hot tub built (right before I got sick) the contractor wanted to put more jets in and my husband told him not to because they make my skin itch! Whenever my husband puts the jets on to relieve his back pain or whatever, I have to sit in between them, if not I will begin to itch like crazy. Doesn't happen in the shower though, although our water pressure stinks. It doesn't happen to anyone else in the family either. It's all just so weird. The more I read about MCAS, the more I feel the need to be tested for it. Now I just have to find a dr. in my area that even knows what MCAS is...Great Azmusiclover: Thanks for your response. I hate the whole bruised feeling thing. It's really not that big of a deal in the grand scheme of things for me. It's just weird to wake up having my ribs feel bruised and then having to try to think back to what I did. I can't even remember what I had for breakfast much less what I did a few days ago ! I guess it feels like I've been working out hard and I'm sore. I get this even after doing yoga for a short while; one and two days later I feel like I worked out really hard, but I didn't. It's just all so weird. I do quite often though feel like I'm bruised right at the base of my left rib cage near the middle. I brought it up to the dr. and he said it might be a build up of cartilage or something. Didn't really have an explanation or remedy other than to say that if it got worse he could give me a cortisone shot...um...I think I'll live with it thanks!! I don't get itchy from heat exposure, it just remember it happening while running/walking or being up against the jets in a hot tub.Thanks again! Hope you all have a good day!! Quote
bebe127 Posted March 19, 2013 Author Report Posted March 19, 2013 Ophelialit,Firstly, sorry I misspelled your name in my earlier response.Secondly, what type of dr. dx you with MCAD?Thanks Quote
Kellysavedbygrace Posted March 19, 2013 Report Posted March 19, 2013 I'm right there with you. And I've found it interesting that my response varies depending on how symptomatic I am. Some days I can handle touch but others I cannot. On bad days:- the wind feels like a million pricks of needles on my face and skin- a paper in my hand feels like a razor blade- an unexpected touch by someone else not only startles me badly but makes me feel like the cartoon cat with his hair standing on end. - I bruise very easily but usually get it in smaller areas where I have been touched- I cannot shave my legs because it feels like I'm cutting the skin- I get body aches that make me hurt all over but normally they are more on the inside not the outside. Quote
bebe127 Posted March 19, 2013 Author Report Posted March 19, 2013 Kelly,You poor thing! I don't have nearly the sensitivity that you have; that must be really hard to deal with.How did you get dx with MCAS and by what type of dr. if you don't mind me asking?Blessings to you,Bebe Quote
k&ajsmom Posted March 19, 2013 Report Posted March 19, 2013 I get this feeling when i sleep on my stomach and my bed is super soft so i dont know why. I do have constant costochondritis that never stops popping and swelling but that doesnt explain why my entire ribcage is sore and hurts to breathe for a little bit..its def wierd. My doctor said i have multiple rib fractures in various stages of healing but not sure why or if this is the pain im feeling. fun fun fun lol Quote
boymommy3 Posted March 20, 2013 Report Posted March 20, 2013 Bebe, YES!!! I get itching with Hhot tub jets or being in the hot tub just being in the hot tub too long! This was before POTS as well, just like my itching when jogging/exercise. I did used to think it was weird but never really considered it a possible symptom of something. It's just crazy, isn't it?! For real, though, I cannot sit against the jets very long at all before it starts to itch. I don't have trouble with the shower either. My skin will be quite red after a shower sometimes but I like to take a hot shower (well, not so much anymore, it makes me feel weird so I haven't had the red skin thing for a while)If you find good MCAS info let me know. I have just started reading about it and it's kind of blowing my mind. I don't know if it's my brain fog or what, but it is very confusing to me. Quote
bebe127 Posted March 20, 2013 Author Report Posted March 20, 2013 k&ajsmom,Wow, multiple rib fractures!? I suppose that can cause a bit of pain! I sleep on my stomach as well and have a soft bed. My lower left rib near the middle quite often feels bruised to the touch, but the bruised feeling I felt on both my lower ribs has gone now. I'm guessing it was just the pressure of the pool chair, even though I was only laying like that for about 15 minutes. Weird.Boymommy3,I do believe you are the only one I've found that gets itchy with hot tub jets. It is so weird. I started looking into the whole MCAS thing when the Dinet newsletter came out and there was an article about it in there (they've since retracted the newsletter to make changes and it hasn't been ready yet). I read through the symptoms and it looks like I have more symptoms of MCAS than I do for POTS. Of course I think the list is a short one but still, here it is:abdominal paindiarrhea*constipationnausea*non-cardiac chest pain*shortness of breath* (rarely)sinus problems**difficulties with vision*swollen lymph nodes (not that I know of)tachycardia*blood pressure issues*syncopeheadache*neuropathic pain (not sure what this is exactly)difficulty concentrating*anxiety**sleeplessness*tinnitus**hiveseasy bruising*muscle, joint, or bone pain*fatigue*environmental sensitivities*flushing* (rarely)I've starred all the symptoms I have. The ones that really stuck out to me were the "easy bruising", "tinnitus", and "sinus problems". I've had these for quite some time, even before being diagnosed with POTS back in 2009. My tinnintus seems to have gotten worse over the last year or so, but it's always been there. I just thought it was interesting and possibly another lead to follow in my journey down chronic illness street It is too confusing, I agree, but I'm going to try do my research and talk to my dr. about it and see where it leads.I don't seem to have many of the POTS symptoms, although I do have the symptoms I starred above along with a positive TTT. I don't have OI, exercise intolerance (I'm just plain lazy), blood pooling, or syncope. I know that everyone is different and presents differently, but I just can't get it out of my mind that when I was first dx., the dr. came in after the TTT and said, "You probably have something called POTS". He then gave me stack of papers he'd printed off at the nurses desk from Dinet.org explaining POTS. He told me that it is rare and that not many dr.s treat it and he didn't know of any. That's pretty much been my life for the past few years. I just deal with it. I do see a GP that has put me on meds. and I do seem better, but mostly I think I've just learned to deal with it, try to ignore my symptoms and get on with my life. I've always felt that there was more to it though and after reading the article on MCAS, I'm back to suspecting that I have something else.Here is a link to a thread I posted about MCAS/D awhile back, it might have some helpful info for you: http://forums.dinet.org/index.php?/topic/22510-for-those-with-mcad/Here's to hoping we all get some answers and relief soon Feel well!!Bebe Quote
bebe127 Posted March 20, 2013 Author Report Posted March 20, 2013 Boymommy3,Forgot to mention that I've never had serious allergy issues before ie: anaphalaxis (sp?), hives, trouble breathing, swelling up or anything like that. I've never had allergy testing either. I know that I have an allergy to sulfa drugs and to gold (I get rashes if I wear it too long). I do however have nasal allergy symptoms like sinus issues, weepy eyes, sneezing, etc. I'm sure there is much more to MCAS than simple allergies, but wouldn't it be great if I could take OTC allergy meds and be "all better"!! I can only hope an answer can be this simple although I've fairly certain it's not.Feel well!!Bebe Quote
bebe127 Posted March 20, 2013 Author Report Posted March 20, 2013 Boymommy3,I was looking on the thread I sent you and found a website that someone suggested about MCAS: http://mastcelldisorders.wallack.us/yabb/YaBB.pl?catselect=general might be of some help.Sorry for the many messages!!Bebe Quote
Kellysavedbygrace Posted March 20, 2013 Report Posted March 20, 2013 I was diagnosed by Dr. Afrin at MUSC in Charleston. He was recommended to me by ChristyD, another member on this forum. I am so thankful for his work in MCAD.Also, as a side note, my youngest son had severe sensory integration disorder from 0-3. So I suspect the more extreme sensory issues run in my family. Quote
boymommy3 Posted March 21, 2013 Report Posted March 21, 2013 I have never had serious allergy issues either. Never been too prone to nasal problems. I do get itchy eyes a lot in the spring and summer and it can be really bothersome. If I don't touch my eyes I'm ok, but if I touch them....it's all over...they itch so bad I tell my husband I feel like I could dig them out of my head. I honestly don't even get headaches very often, but have noticed of late that I have been getting more.I have noticed that I have become more sensitive to smells. Not that I have an allergic reaction to them (other than a headache sometimes), but it's like my sniffer is on overdrive...I smell things all the time way before my family does.I had some food allergy testing done quite a few years ago but outside of that I've had nothing either. I did have something called Erythema Nodosum when I was pregnant with my oldest and I am not sure if that would be related at all. BTW, sorry for all the crazy typos in my earlier posts....it was late last night when I was posting and sometimes my brain works WAY faster than my fingers! LOL! Ah, yes.....to be "all better" would be sooooo very good. Thanks for the links....I am checking those out!I can't wait to go back and see my Endo and get my test results from him. Even though he doesn't know about POTS ( I love him and he's so thorough in other areas) he thinks I have something autoimmune going on. It's just a piece to the puzzle but it's oh so nice to be able to put pieces together!Blessings I your search as well! I pray we can all find the answer!!!! Quote
bebe127 Posted March 21, 2013 Author Report Posted March 21, 2013 Boymommy3,My sniffer is on overdrive too!! Smells never bothered me before, but now they can be really bothersome at times. I remember my mom couldn't tolerate smells either, she'd get a headache (I don't though). When my husband would come over (then my boyfriend) I had to tell him he couldn't wear his cologne in the house because it would set my mother off. Of course, it didn't help that he bathed in his cologne, still does Kelly,I know you mentioned Dr. Afrin in a past post of mine. So glad for you that you got things sorted out and you like him and he's been so helpful to you. Can you tell a difference in how you feel? Are you doing noticably better? Do you still have the myriad symptoms? I would love to go to Charleston and see him, but it doesn't look possible in the near future. I guess I just have to talk to my GP and see if he knows anything and can point me in some sort of direction down here.Hope all is well Bebe Quote
Kellysavedbygrace Posted March 21, 2013 Report Posted March 21, 2013 You probably know this, there is no one fits all treatment for MCAD. Many do experience some improvement with antihistamine drugs but some can't tolerate them. Some experience improvement with aspirin therapy, and some (like me) can't tolerate it.The pharmacological treatment protocol for MCAS is essentially a long list of meds (mostly mast cell blocking agents) that require a long term process of trial and error. I'm hopeful that over the next few years I will be able to experience more significant improvement.In addition to my Dysautonomia drugs I added high dose antihistamines and had about a 10% improvement. For me, that is good bc other than IV saline therapy I have had no drug thus far give me that much improvement. Since then I've added Adderall which is a strong vaso constrictor and stimulates circulation as well as energy. Ive experienced about a 25% improvement but only on good days- when my body absorbs it. (about 50% of the time.)My job now is to be like a scientist. To create hypotheses and carefully test them one at a time. I suspect I'm looking at a very long term process. Quote
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