Hank, as you well know by now, were it not for my intimate relationship w/ our Lord Jesus, and the medications, I would have never, ever made it this far!!!!! Pain hurts so everyone that has it is in the same place. I have my times (only occasionally every other minute or so-JK), I reach my human threshholds but I am deliberate about keeping my heart/spirit right and not complaining. I am beyond grateful that no matter how hard it gets, and believe me it gets hard, that I am always acutely aware of my innumerable blessings and, still have the peace of Christ which surpasses human understanding. Grateful, Sunnyflower
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
Hi @runwthme, I thought I'd check in with you and see if you saw the helpful replies from @jesfactsmon@sunnyflower and @hotfooted with their thoughts on seeking medical care. How are you doing today?
Thank you for your kind words Lori Renee! I so pray these things are true of me. I care so deeply for each person in the groups and want so badly to bring to all the comfort and peace of God that gets me through. You contribute a lot yourself and I for one am blessed by you! It's great to know you here my friend! Warm hugs, 🤗. Sunny. ❤️💐
Hi @runwthme, I thought I'd check in with you and see if you saw the helpful replies from @jesfactsmon@sunnyflower and @hotfooted with their thoughts on seeking medical care. How are you doing today?
Hi, I haven’t been on in awhile. I will scroll thru and look at the replies. Sunday, over night a small clamp came loose under our sink and flooded our whole house( ranch) and every room in the house had water damage. So, we are living in a hotel atm for at least a month. And as we all know stress can produce flares, and is. Thank you so much for checking in, That’s so kind, and for everyone’s response to my first post. I tend to have an “anxious” personality, but thankfully my husband is as calm as it gets.😉
Hi, I haven’t been on in awhile. I will scroll thru and look at the replies. Sunday, over night a small clamp came loose under our sink and flooded our whole house( ranch) and every room in the house had water damage. So, we are living in a hotel atm for at least a month. And as we all know stress can produce flares, and is. Thank you so much for checking in, That’s so kind, and for everyone’s response to my first post. I tend to have an “anxious” personality, but thankfully my husband is as calm as it gets.😉
@runwthme
I am sorry to hear about this disaster. Especially with all that you are dealing with in terms of your health issues.
Regarding those, you had said this all hit you overnight. So you went from a person without any serious health issues to one with a significant set of them. That is so strange. Any idea why? I mean were there any unusual things which had happened to you physically before this happened? Can you remember any possible exposure to toxins, either thru breathing or in food, drink, etc.? Did you have any recent surgeries? Recent shots, innoculations? Do you live near anything unusual, electric power lines, microwave transmitters, anything else out of the ordinary? I am sure you must have been asked all this before so forgive me if this is old ground. Just looking for some sort of reference point. Seems unfathomable for all of this to hit you at once out of the blue.
I hope you can develop some sense of stability around you as you go through this huge ordeal. I don't want to get you into trouble and I am not familiar with Texas laws, but if you are comfortable and it is available, you may want to consider either medical marijuana and/or kratom, to help you deal with the pain until you are able to transition back home. You need something to help even the keel for you in this stressful moment of you life.
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
Good morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole life changed. The local doctors weren’t helpful at all. I was finally hospitalized because I was in bad shape. The doctors did an MRI. of my brain but couldn’t tell what they were
wlooking at. My husband said enough is enough and got an appointment with a neurologiy-inflammatory doctor and I’ve been going there ever since. To be sure, it has t been a bed of roses, but they know what they’re talking about.
So, to make a long story shorter, you want to find an experienced rheumatologist or just go to a large medical center or university medical center. Write down everything that happened, a timeline, whatever you can think of and take it with you. I wish you a lot of luck and all the best. ADVOCATE for yourself! Be sure to let me know what happens-will you? Becky
Hi, I haven’t been on in awhile. I will scroll thru and look at the replies. Sunday, over night a small clamp came loose under our sink and flooded our whole house( ranch) and every room in the house had water damage. So, we are living in a hotel atm for at least a month. And as we all know stress can produce flares, and is. Thank you so much for checking in, That’s so kind, and for everyone’s response to my first post. I tend to have an “anxious” personality, but thankfully my husband is as calm as it gets.😉
Dear runwthme, I am so sorry to hear about your flood! I hope and will pray for zero body symptoms while dead with this extra stress. Don't forget to take good care of yourself! Warmest wishes, Sunnyflower 🙏😊
After reading others experiences with Erythromelalgia and already dealing with it in my feet, I guess this is where I need to post what's happening with me now. I have tried to ignore the possibility of ER moving to other parts of my body.... preferring to think of my problems as neuropathy related. I have not brought any changes up to my doctor, but have been trying to find someone who could do myofascial massage for my feet, legs, hands, and arm pain. Last week we drove over 100 miles to have deep tissue massage for one hour on mainly my extremities. That night I slept so well, altho with many large torso jerks and leg kicks.. Next day I felt wonderful and walked around the house, just enjoyed feeling so great.. but now the numbness and heaviness in my limbs and even my head between my ears feels rather strange.. I'm guessing the queasy tummy is only my anxiety over what might be happening to me now.. I feel weepy, too.. Thank God for my husband.. he's so understanding and helpful.. He suggested that I needed to move more, not on my feet, but pedal on the exercycle.. get on the balance thing on the floor some.. I did pedal 3 miles already... Thank you for any suggestions...
Dearest hotfooted, my heart aches for what you are going through. I am very grateful that you have a husband like he is. I do too. It's rare! I know what anxiety feels like and it's horrible! I also am way too familiar with what it feels like to be weepy. I will uphold you in prayer and ask God to comfort and encourage you and give you His peace through Christ which surpasses human understanding. That's what works for me gets me through the many fires we walk through in our lives. Many blessings, Sunnyflower
Hi, I haven’t been on in awhile. I will scroll thru and look at the replies. Sunday, over night a small clamp came loose under our sink and flooded our whole house( ranch) and every room in the house had water damage. So, we are living in a hotel atm for at least a month. And as we all know stress can produce flares, and is. Thank you so much for checking in, That’s so kind, and for everyone’s response to my first post. I tend to have an “anxious” personality, but thankfully my husband is as calm as it gets.😉
Hi,
Read your post, and feel bad you have health issues, and now dealing with a flood.
being a survivor of the Wolsey canyon fire, I can understand what you are going thru.
Most important call insurance company, take a lot of pictures, and insist you get new wallboard/baseboards, as moisture gets trapped inside of walls and then mold starts.
If your furniture is ruined get outside quickly, as water can and will penetrate the wood, fabric,etc., and cause allergies from the chemicals used to stain wood, and also today’s fabrics have protective chemicals. I could write a book on what to expect when dealing with insurance companies.
Most important let them know you have health issues, so they refrain from their pressure tactics.
With a house flood, I doubt you will be back home in 30 days.
Maybe rent a home/apartment is a better choice.
Wish you well, and try not to stress, I know easier said then done.
Funcountess
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As are you Jen!! 🤗
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1 Reaction@sunnyflower God in heaven, how wonderful you are. You are sheer joy! An inspiration to everyone here. Love, Lori Renee
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2 ReactionsHi @runwthme, I thought I'd check in with you and see if you saw the helpful replies from @jesfactsmon @sunnyflower and @hotfooted with their thoughts on seeking medical care. How are you doing today?
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1 ReactionThank you for your kind words Lori Renee! I so pray these things are true of me. I care so deeply for each person in the groups and want so badly to bring to all the comfort and peace of God that gets me through. You contribute a lot yourself and I for one am blessed by you! It's great to know you here my friend! Warm hugs, 🤗. Sunny. ❤️💐
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2 ReactionsHi, I haven’t been on in awhile. I will scroll thru and look at the replies. Sunday, over night a small clamp came loose under our sink and flooded our whole house( ranch) and every room in the house had water damage. So, we are living in a hotel atm for at least a month. And as we all know stress can produce flares, and is. Thank you so much for checking in, That’s so kind, and for everyone’s response to my first post. I tend to have an “anxious” personality, but thankfully my husband is as calm as it gets.😉
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2 Reactions@runwthme
I am sorry to hear about this disaster. Especially with all that you are dealing with in terms of your health issues.
Regarding those, you had said this all hit you overnight. So you went from a person without any serious health issues to one with a significant set of them. That is so strange. Any idea why? I mean were there any unusual things which had happened to you physically before this happened? Can you remember any possible exposure to toxins, either thru breathing or in food, drink, etc.? Did you have any recent surgeries? Recent shots, innoculations? Do you live near anything unusual, electric power lines, microwave transmitters, anything else out of the ordinary? I am sure you must have been asked all this before so forgive me if this is old ground. Just looking for some sort of reference point. Seems unfathomable for all of this to hit you at once out of the blue.
I hope you can develop some sense of stability around you as you go through this huge ordeal. I don't want to get you into trouble and I am not familiar with Texas laws, but if you are comfortable and it is available, you may want to consider either medical marijuana and/or kratom, to help you deal with the pain until you are able to transition back home. You need something to help even the keel for you in this stressful moment of you life.
All my best to you, Hank
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1 ReactionGood morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole life changed. The local doctors weren’t helpful at all. I was finally hospitalized because I was in bad shape. The doctors did an MRI. of my brain but couldn’t tell what they were
wlooking at. My husband said enough is enough and got an appointment with a neurologiy-inflammatory doctor and I’ve been going there ever since. To be sure, it has t been a bed of roses, but they know what they’re talking about.
So, to make a long story shorter, you want to find an experienced rheumatologist or just go to a large medical center or university medical center. Write down everything that happened, a timeline, whatever you can think of and take it with you. I wish you a lot of luck and all the best. ADVOCATE for yourself! Be sure to let me know what happens-will you? Becky
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2 ReactionsDear runwthme, I am so sorry to hear about your flood! I hope and will pray for zero body symptoms while dead with this extra stress. Don't forget to take good care of yourself! Warmest wishes, Sunnyflower 🙏😊
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2 ReactionsDearest hotfooted, my heart aches for what you are going through. I am very grateful that you have a husband like he is. I do too. It's rare! I know what anxiety feels like and it's horrible! I also am way too familiar with what it feels like to be weepy. I will uphold you in prayer and ask God to comfort and encourage you and give you His peace through Christ which surpasses human understanding. That's what works for me gets me through the many fires we walk through in our lives. Many blessings, Sunnyflower
Hi,
Read your post, and feel bad you have health issues, and now dealing with a flood.
being a survivor of the Wolsey canyon fire, I can understand what you are going thru.
Most important call insurance company, take a lot of pictures, and insist you get new wallboard/baseboards, as moisture gets trapped inside of walls and then mold starts.
If your furniture is ruined get outside quickly, as water can and will penetrate the wood, fabric,etc., and cause allergies from the chemicals used to stain wood, and also today’s fabrics have protective chemicals. I could write a book on what to expect when dealing with insurance companies.
Most important let them know you have health issues, so they refrain from their pressure tactics.
With a house flood, I doubt you will be back home in 30 days.
Maybe rent a home/apartment is a better choice.
Wish you well, and try not to stress, I know easier said then done.
Funcountess
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Helpful -
Hug
2 Reactions