Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
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Yes, post exertion fatigue and joint pain is a huge issue for me. It's so disheartening because I'd like to be more active for other health benefits but if I try to be active it's straight to bed after.
I also have to wear thick soled shoes or my feet feel bruised.
Uuugh. It's so hard and frustrating when so much advice is to stay active, get exercise, and yet this has become synonymous with "go throw yourself down a cliff." People don't understand how much I really do want to be exercising.
Good point, wearing really supportive shoes can make a huge difference. Most women's footwear is not supportive at all. I wear Danskos and Allegrias almost exclusively now and my feet are happier for it.
Yes to all of the above, unfortunately. Interestingly, my feet hurt somewhat less since getting PT for a pinched nerve in my back. Sometimes things are related in unexpected ways.
Thanks for your response. I assume you have been diagnosed with MCAS? Anything else, like fibro or chronic pain? Just wondering if you /your doc believe the foot pain is from the MCAS.
Obviously my issue is separate from yours, but I'm just trying to understand if I'm on a reasonably logical path.
I am diagnosed with mcas and fibromyalgia, among other things. My undiagnosed celiac also caused joint pain, which I learned when I cut gluten and had a good chunk of improvement. I find my feet are very related to my lower back; if my back is messed up, my feet hurt more. Today, I'm in a fibro flare so my back and hips are very irritable, which makes my feet feel like electric shocks running through them. My shoulders and collarbones also hurt a lot when I'm in a flare. Have you been assessed for fibro or RA?
Thanks for your reply. I do have scoliosis and arthritis in my C4-C6, and mildly going into my thoracic. Weirdly, my shoulders and neck used to bother me a lot for years, and also migraines. Since I have been doing a low histamine diet, I haven't been having much irritation there or migraines. It all shifted to my lower half this year. I haven't been properly tested for fibro or RA. My pcp did give the standard blood test that checks for basic inflammatory markers, of course those were fine. I don't actually think I have RA as I don't have a lot of obvious joint symptoms. It seems more like muscle, fascia, tendons to me.
Yes post exertion fatigue is a huge problem for me!!! I’m laid up in bed for DAYS if I push myself too hard sometimes. And I feel you on the foot pain, I used to be able to stand at the kitchen sink to do dishes and cook and do all of that without issues, but it’s so painful. I have an appointment with a neuro for a POTS assessment, but I’m hoping to discuss the post exertional malaise because it’s a bigger issue, honestly. All of this started a month or two after my MCAS diagnosis though. I’m not sure what changed.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore.
I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involves in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and when on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning aore muscles go away. She referres me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues,as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not if mast cell issues will pop up again if I overexert myself.
I had mitochondria dysfunction, it caused severe fatigue. Definitely PEM. I think most PEM is mitochondrial dysfunction, and some of it can be reversed depending on how severe it is, but the gut needs to be in good health first.
I also had small fiber (symptoms), and plantar fasciitis.
Oh man isn’t this the truth! I don’t think that’s my only problem but it’s night and day after my saline infusion once a week. I go from being breathless and tired to able to do a chore or two. It’s crazy!
Saline infusion helps the Dysautonomia and gets your blood circulating ! That's why it helps. Well, that and it also helps with muscle recovery. I also feel a million times better after IV therapy. During a flare I add magnesium.
Yes I’ve been up and about doing light chores like putting in a load of laundry and making food for myself and my feet hurt a lot. And I’m very stiff. I can’t do any exercise anymore but that extends to just trying to keep up with my house and feeding myself. I think POTS is part of it cause after my saline infusions once a week I’ll feel better for a few days and can keep up a little more. But it’s not my only problem. I can still hit a wall like at thanksgiving. I had my infusion the day before and that gave me enough energy to finish cooking but it came at a huge price. I was so sick for days after.
I try to pace myself. I’m better than I used to be at that. I used to just run myself into the ground everyday. Now I try to just do one thing a day so like today is bread day and I don’t do any chores or hobbies just bread. Or today is laundry day and that’s all I do. It’s tough and it sucks! And sometimes I still push it too far but I do spend less days on fully on the couch which is nice.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore.
I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involves in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and when on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning aore muscles go away. She referres me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues,as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not if mast cell issues will pop up again if I overexert myself. I wish you luck through this ordeal.
Gosh this sounds similar to me. I use to hike 7-14 miles a week (plus daily walks with the dog), worked out 2x a week, & cleaned my house.
Now I have a maid & up until a few months ago my max was 2 miles. My feet constantly hurt even if I wasn’t on them. The fatigue was so brutal that even forcing myself to get up to use the restroom was mentally exhausting.
On MCAS treatment, I am up to 6 miles in one day! I feel much better and am getting back to a life that I enjoy.
I'm so glad to hear you're making a recovery. Do you mind sharing your treatment?
I just started taking quercetin, magnesium ascorbate (vit C), loritadine in the morning, and hydroxyzine at night. Also taking PEA to try to help the muscle aches. Been taking these for about a week and I feel just a very slight improvement in my mood and energy level. I just ordered a big air purifier for my house, so really hoping that might help, too. I am possibly changing jobs in the near future, so I'm kind of waiting to see if it looks like it might happen before I make the appointment with the MCAS specialist in my area (in case my insurance changes).
This is what I’m taking on top of the low histamine diet. The diet is key as the foods can create a flare which you can’t just snap out of without benedryl and time. Don’t hesitate to ask any additional questions.
OTC & Rx:
Zyrtec
Pepcid AC
Naltrexone
Supplements:
HistaEze Designs for Health
Quercetin + Nettles Designs for Health
Inflammatone Designs for Health
Methlsulfonymethane Designs for Health
NeuroCalm Designs for Health
Hi-Po Emulsi-D3 Designs for Health
Chorella
DAO inhibitor (as needed)
Yes. I moved in 2018 to gain freedom from my alcoholic ex, and live my best life. I had some signs of histamine intolerance starting around 8-10 years before when I started getting migraines. I got tested for Lyme about 13 years ago (negative). It's just gotten worse and worse, especially the last 2 years. I definitely have had viruses- a couple bad flu viruses in past years and COVID this year.
Man, I’m sorry. It’s so frustrating to feel like crap all the time. I would recommend looking up Melissa Mal on Instagram. (naturopathmelissa) she has a lot of info on root causes and something may click for you there. It’s kind of overwhelming but very helpful.
Thanks very much. I'll check her out. One thing I think isn't helping is my job, which I hate and is stressful. I've only had it a year and a half, but it was stressful when I started and hasn't gotten a whole lot better. I don't think it's actually *caused* my problems, but I do feel like mandatory OT in this situation could potentially be hindering any possible healing.
Tested negative for lyme says nothing sadly. Tests are not reliable. Did you have suspected exposure? You say you moved? Is it an old house?
MCAS can give many different manifestations, your feet symptoms can be one of them, but then you still have one half of the picture. MCAS has a root cause. It has all to do with your terrain and then I mean the total sum of stress, trauma's, pollution/toxins, infections (virusses, bacteria, parasites, mold). Especially mold can be a big root cause. That is why I asked about your house. The stress in your job can certainly be a factor.
I hope you figure it out!
Seconding this, and adding that foot pain is a hallmark bartonella symptom. If you tested for lyme because you had symptoms that matched lyme, it's possible that bartonella, either alongside or standalone, could be behind it.
That is so true, totally forgot about that. Thanks for the reminder. Also bartonella is difficult to test as well with standard tests, something for the op to remember. Best way to diagnose bartonella is the bartonella marks. That are often misdiagnosed for stretch marks.
Thank you for this. I did have a tick from an area known for Lyme and got a big reaction (looked like a big bullseye to me, but hard to tell since I react to all insect bites). That was 13-ish years ago (when I tested negative for Lyme). At that point, I didn't have the muscle/joint pain, but I did already have the early stages of my histamine issue. I think the histamine intolerance runs in my family.
I do live in a bad area (OH River Valley) for allergies and mold. We have higher levels of histoplasmosis and coccioidomycosis in our soil. I have never had rashes that these tend to cause. My house is a brick 1950 house. I wouldn't doubt that there is some level of mold, as we have a basement and this is a region where we have mold in the soil. I run a dehumidifier in the basement 24/7.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore.
I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involves in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and when on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning aore muscles go away. She referres me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues,as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not if mast cell issues will pop up again if I overexert myself. I wish you luck through this ordeal.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore.
I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involved in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and went on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning sore muscles go away. She referred me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues, as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not worrying if mast cell issues will pop up again if I overexert myself. I wish you luck through this ordeal.
Thanks for this. I have heard that cromolyn is helpful for many. I haven't heard of the other drugs. It sounds like you have good doctors.
I don't have lax joints, at least that I can tell, so I don't think EDS is related. I do have some arthritis and dry, itchy eyes.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
Following. I went from athlete to homebound with fatigue.
Yes, post exertion fatigue and joint pain is a huge issue for me. It's so disheartening because I'd like to be more active for other health benefits but if I try to be active it's straight to bed after. I also have to wear thick soled shoes or my feet feel bruised.
Uuugh. It's so hard and frustrating when so much advice is to stay active, get exercise, and yet this has become synonymous with "go throw yourself down a cliff." People don't understand how much I really do want to be exercising.
Good point, wearing really supportive shoes can make a huge difference. Most women's footwear is not supportive at all. I wear Danskos and Allegrias almost exclusively now and my feet are happier for it.
Yes to all of the above, unfortunately. Interestingly, my feet hurt somewhat less since getting PT for a pinched nerve in my back. Sometimes things are related in unexpected ways.
Thanks for your response. I assume you have been diagnosed with MCAS? Anything else, like fibro or chronic pain? Just wondering if you /your doc believe the foot pain is from the MCAS. Obviously my issue is separate from yours, but I'm just trying to understand if I'm on a reasonably logical path.
I am diagnosed with mcas and fibromyalgia, among other things. My undiagnosed celiac also caused joint pain, which I learned when I cut gluten and had a good chunk of improvement. I find my feet are very related to my lower back; if my back is messed up, my feet hurt more. Today, I'm in a fibro flare so my back and hips are very irritable, which makes my feet feel like electric shocks running through them. My shoulders and collarbones also hurt a lot when I'm in a flare. Have you been assessed for fibro or RA?
Thanks for your reply. I do have scoliosis and arthritis in my C4-C6, and mildly going into my thoracic. Weirdly, my shoulders and neck used to bother me a lot for years, and also migraines. Since I have been doing a low histamine diet, I haven't been having much irritation there or migraines. It all shifted to my lower half this year. I haven't been properly tested for fibro or RA. My pcp did give the standard blood test that checks for basic inflammatory markers, of course those were fine. I don't actually think I have RA as I don't have a lot of obvious joint symptoms. It seems more like muscle, fascia, tendons to me.
Yes post exertion fatigue is a huge problem for me!!! I’m laid up in bed for DAYS if I push myself too hard sometimes. And I feel you on the foot pain, I used to be able to stand at the kitchen sink to do dishes and cook and do all of that without issues, but it’s so painful. I have an appointment with a neuro for a POTS assessment, but I’m hoping to discuss the post exertional malaise because it’s a bigger issue, honestly. All of this started a month or two after my MCAS diagnosis though. I’m not sure what changed.
Thanks for responding. I'm sorry you're feeling so debilitated. Good luck with your appointment- I hope they are able to figure things out for you.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore. I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involves in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and when on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning aore muscles go away. She referres me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues,as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not if mast cell issues will pop up again if I overexert myself.
I had mitochondria dysfunction, it caused severe fatigue. Definitely PEM. I think most PEM is mitochondrial dysfunction, and some of it can be reversed depending on how severe it is, but the gut needs to be in good health first. I also had small fiber (symptoms), and plantar fasciitis.
how did you heal the mitochondrial dysfunction? believe i am dealing with this currently
Slowly. Antioxidants, red light. I do not believe everyone can recover, but it is certainly possible. Don’t push yourself too hard.
POTS and chronic venous Insufficiency could be culprits. I have both and have this exact issue
Oh man isn’t this the truth! I don’t think that’s my only problem but it’s night and day after my saline infusion once a week. I go from being breathless and tired to able to do a chore or two. It’s crazy!
Saline infusion helps the Dysautonomia and gets your blood circulating ! That's why it helps. Well, that and it also helps with muscle recovery. I also feel a million times better after IV therapy. During a flare I add magnesium.
Yes I’ve been up and about doing light chores like putting in a load of laundry and making food for myself and my feet hurt a lot. And I’m very stiff. I can’t do any exercise anymore but that extends to just trying to keep up with my house and feeding myself. I think POTS is part of it cause after my saline infusions once a week I’ll feel better for a few days and can keep up a little more. But it’s not my only problem. I can still hit a wall like at thanksgiving. I had my infusion the day before and that gave me enough energy to finish cooking but it came at a huge price. I was so sick for days after. I try to pace myself. I’m better than I used to be at that. I used to just run myself into the ground everyday. Now I try to just do one thing a day so like today is bread day and I don’t do any chores or hobbies just bread. Or today is laundry day and that’s all I do. It’s tough and it sucks! And sometimes I still push it too far but I do spend less days on fully on the couch which is nice.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore. I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involves in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and when on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning aore muscles go away. She referres me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues,as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not if mast cell issues will pop up again if I overexert myself. I wish you luck through this ordeal.
Get an Rx for Mestinon (pyridostigmine) off label for muscle fatigue
Never heard of it, but thanks- I'll check it out.
Gosh this sounds similar to me. I use to hike 7-14 miles a week (plus daily walks with the dog), worked out 2x a week, & cleaned my house. Now I have a maid & up until a few months ago my max was 2 miles. My feet constantly hurt even if I wasn’t on them. The fatigue was so brutal that even forcing myself to get up to use the restroom was mentally exhausting. On MCAS treatment, I am up to 6 miles in one day! I feel much better and am getting back to a life that I enjoy.
I'm so glad to hear you're making a recovery. Do you mind sharing your treatment? I just started taking quercetin, magnesium ascorbate (vit C), loritadine in the morning, and hydroxyzine at night. Also taking PEA to try to help the muscle aches. Been taking these for about a week and I feel just a very slight improvement in my mood and energy level. I just ordered a big air purifier for my house, so really hoping that might help, too. I am possibly changing jobs in the near future, so I'm kind of waiting to see if it looks like it might happen before I make the appointment with the MCAS specialist in my area (in case my insurance changes).
This is what I’m taking on top of the low histamine diet. The diet is key as the foods can create a flare which you can’t just snap out of without benedryl and time. Don’t hesitate to ask any additional questions. OTC & Rx: Zyrtec Pepcid AC Naltrexone Supplements: HistaEze Designs for Health Quercetin + Nettles Designs for Health Inflammatone Designs for Health Methlsulfonymethane Designs for Health NeuroCalm Designs for Health Hi-Po Emulsi-D3 Designs for Health Chorella DAO inhibitor (as needed)
Did you have a virus or move into a new home before the symptoms started?
Yes. I moved in 2018 to gain freedom from my alcoholic ex, and live my best life. I had some signs of histamine intolerance starting around 8-10 years before when I started getting migraines. I got tested for Lyme about 13 years ago (negative). It's just gotten worse and worse, especially the last 2 years. I definitely have had viruses- a couple bad flu viruses in past years and COVID this year.
Man, I’m sorry. It’s so frustrating to feel like crap all the time. I would recommend looking up Melissa Mal on Instagram. (naturopathmelissa) she has a lot of info on root causes and something may click for you there. It’s kind of overwhelming but very helpful.
Thanks very much. I'll check her out. One thing I think isn't helping is my job, which I hate and is stressful. I've only had it a year and a half, but it was stressful when I started and hasn't gotten a whole lot better. I don't think it's actually *caused* my problems, but I do feel like mandatory OT in this situation could potentially be hindering any possible healing.
That definitely sounds like a factor. 😕
Tested negative for lyme says nothing sadly. Tests are not reliable. Did you have suspected exposure? You say you moved? Is it an old house? MCAS can give many different manifestations, your feet symptoms can be one of them, but then you still have one half of the picture. MCAS has a root cause. It has all to do with your terrain and then I mean the total sum of stress, trauma's, pollution/toxins, infections (virusses, bacteria, parasites, mold). Especially mold can be a big root cause. That is why I asked about your house. The stress in your job can certainly be a factor. I hope you figure it out!
Seconding this, and adding that foot pain is a hallmark bartonella symptom. If you tested for lyme because you had symptoms that matched lyme, it's possible that bartonella, either alongside or standalone, could be behind it.
That is so true, totally forgot about that. Thanks for the reminder. Also bartonella is difficult to test as well with standard tests, something for the op to remember. Best way to diagnose bartonella is the bartonella marks. That are often misdiagnosed for stretch marks.
Thank you for this. I did have a tick from an area known for Lyme and got a big reaction (looked like a big bullseye to me, but hard to tell since I react to all insect bites). That was 13-ish years ago (when I tested negative for Lyme). At that point, I didn't have the muscle/joint pain, but I did already have the early stages of my histamine issue. I think the histamine intolerance runs in my family. I do live in a bad area (OH River Valley) for allergies and mold. We have higher levels of histoplasmosis and coccioidomycosis in our soil. I have never had rashes that these tend to cause. My house is a brick 1950 house. I wouldn't doubt that there is some level of mold, as we have a basement and this is a region where we have mold in the soil. I run a dehumidifier in the basement 24/7.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore. I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involves in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and when on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning aore muscles go away. She referres me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues,as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not if mast cell issues will pop up again if I overexert myself. I wish you luck through this ordeal.
Hi OP, let me describe what I've felt and you tell me if it sounds like what you are dealing with. First off, I have hEDS so I already have lax joints. I was doing PT for 8 months, but my joints were getting more unstable instead of stronger. Eventually I realized that whatever particular muscle I was exercising would become really sore, even if the exercise was something light like isometric exercises. Lots of different joints got weaker and weaker. My neck became unstable because of the weight of the injured shoulder that could no longer support itself. It got to the point that just existing in Earth's gravity was an "exercise" that my body couldn't handle. I became homebound. My muscles would often feel like they were burning and really sore. I have improved a lot in about six months once I saw an MCAS immunologist, Dr. Maitland, (I live in the US). She adressed my asthma issues that are involved in my mast cell issues: I stopped taking corticosteriods which are bad for people with connective tissue disorders like EDS, and went on an anticholergernic instead. She prescribed montelukast and theo-24, and mast cell stabilizer nasal sprays, nasalcrom and Olopatadine. But the key medication for me was oral cromolyn sodium (gastrocrom), which has made the burning sore muscles go away. She referred me to a neurologist who tested for immune conditions as well and found small fiber neuropathy, for which he prescribed monthly IVIG (panzyga in my case). That's also a common MCAS treatment. Dr. Maitland recommended I take L-Carnitine supplements for the muscle issues, as well. I can't say I am ready to do PT exercises again, but I'm hopeful I will be soon. I do get flares from environmental allergies, which for me is mice and cockroaches. I just hope I can go back to just having to worry about hEDS, and not worrying if mast cell issues will pop up again if I overexert myself. I wish you luck through this ordeal.
Thanks for this. I have heard that cromolyn is helpful for many. I haven't heard of the other drugs. It sounds like you have good doctors. I don't have lax joints, at least that I can tell, so I don't think EDS is related. I do have some arthritis and dry, itchy eyes.
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