1. < Autoimmune Diseases

Any connection?

Posted by sissy38 @sissy38, May 31, 2023

Is there any connection with: Lots of Small Health Problems. Like: Trigeminal neuralgia. Chronic sinusitis, Headaches, Glaucoma, Linea alba(white lines in mouth) Heart palpitations, High Blood Pressure, Breathing Difficulties, Weight gain(160lbs two years ago 140)Vagus nerve damage, chronic hiccups, Bile reflux, Diverticulitis, Tiny hiatal hernia, Pelvic floor dysfunction, Inflammation in colon, Psoriasis, Hip bursitis, Hip tendinitis, Mild Scoliosis, Ankle swelling and pain, Lower back nerve pain, Ulnar Variance right wrist hurts with repetitive movements). I’ve went to MAYO for GI issues but still yet to get any better, I ran out of time for all my other health issues. Drs around here have me doing Physical Therapy for Hip and Pelvic floor issues. Had a Ecocardiogram done but no results. EKG comes back abnormal: no st or t wave change.I’m told this is normal. Diastolic blood pressure is always at 90 or above, My colon is causing sweating, nausea pain when I have a bowel movement unless I have yellow water stools from laxatives. Any help or suggestions or a recommendation on where to call for some help would be appreciated. Thank you for reading and know your not alone. Ps I’m at the point where a feel as if my normal dr thinks I’m a hypochondriac.

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Valerie | @lacy2 | May 31, 2023

Sorry to read this and although I cannot offer help, you are correct that we are not alone and our family doctor, and others, think we are hypochondriacs! I don't know your age but I am almost 80 and since I had cancer of cervix in 1985 it seems like now one thing after another and as soon as get relief from one problem, one of the others flares up. I have a few of the same issues as you... and often wonder if it's possibly "one thing" causing all mine ... I have wondered if all of these things I was "born with" or predisposed to, that's the only thread I can think of/hereditary? I sure treasure the odd hour/s here and there when I fell reasonably well. (Occular migraines; cancer; IBS-D/fecal incontinence; Fibro?; Narrow Angle Glaucom/floatgers; Cysts on kidneys; essential tremour; mild p.n. in lower arms and legs; Half thyroid and goitre removed so now hypothyroid; small stroke; chronic sinusitis; moderate hearing loss and ear pain; cystitis; and like you a few more!! Not life threatening but life altering, and I read on here and know of others who are coping with much more than I am - and I am not coping well and sprinkling of anxiety and depression: people say it could be worse and it could, but quality of life for me just isn't there any more. I wish you the best and hope you get some comments that help improve things for you... take care .... J.

REPLY
1 reply
sissy38 | @sissy38 | May 31, 2023
In reply to @lacy2 "Sorry to read this and although I cannot offer help, you are correct that we are..." + (show)
@lacy2

Sorry to read this and although I cannot offer help, you are correct that we are not alone and our family doctor, and others, think we are hypochondriacs! I don't know your age but I am almost 80 and since I had cancer of cervix in 1985 it seems like now one thing after another and as soon as get relief from one problem, one of the others flares up. I have a few of the same issues as you... and often wonder if it's possibly "one thing" causing all mine ... I have wondered if all of these things I was "born with" or predisposed to, that's the only thread I can think of/hereditary? I sure treasure the odd hour/s here and there when I fell reasonably well. (Occular migraines; cancer; IBS-D/fecal incontinence; Fibro?; Narrow Angle Glaucom/floatgers; Cysts on kidneys; essential tremour; mild p.n. in lower arms and legs; Half thyroid and goitre removed so now hypothyroid; small stroke; chronic sinusitis; moderate hearing loss and ear pain; cystitis; and like you a few more!! Not life threatening but life altering, and I read on here and know of others who are coping with much more than I am - and I am not coping well and sprinkling of anxiety and depression: people say it could be worse and it could, but quality of life for me just isn't there any more. I wish you the best and hope you get some comments that help improve things for you... take care .... J.

Jump to this post

It's hard some days to keep on going I'm 40 this year and all this just started at 30. I had a hysterectomy in February that helped with some of my women's issues. So I'm doing better than normal, it's all just pilling up the past two weeks, it seems like everything has to flare up one right after the other, I wish you well in your journey.

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Valerie | @lacy2 | May 31, 2023

Ah so you have many years ahead of you.... I too hope that you can get the help required to lessen the effect of such a long list of issues...I agree, one thing settled down and another starts up...I am constantly talking about my feelings but my adult children think if I get up and get going I will feel better.... they mean well, as do others, but when every day something is hurting it's hard isn't it?... it's ok to reach out and seek help and especially past covid I find the doctors and nurse practitioners having their own issues, or is it my imagination.... in any case we seem to have to be doing a lot of the research ourselves and I really find a lot of help on this site ... its sad to read of so many illnesses but also get a lot of helpful feedback.. take care and wish you the best, J.(Canada)

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annewoodmayo | @annewoodmayo | Jun 1, 2023

OMG! Sissy, you could have written my history!
1. You are not a hypochondriac! Don't let ANYONE gas-light you (tell you that nothing is wrong with you). This makes me so angry on your behalf.

Specialist doctors, in my experience, prefer to keep things simple for themselves by only focusing on their body part without considering the entire picture of your body.
And that's how they often miss systemic problems.

2. I am not a doctor, but it sounds to me like you might have an autoimmune disease or multiple autoimmune diseases.
Have you had any blood work done?
The first step blood work for autoimmune disease is called ANA for antinuclear antibodies. Your primary care doctor can order this test for you.
A negative (normal) result doesn't mean that nothing is wrong with you.
A positive result will make the doctors pay attention to your case and remove the hypochondriac obstacle.
A rheumatologist diagnoses and treats autoimmune diseases.
3. I have some more ideas for you, but my eyes are starting to bother me. I'm going to try to get all of my ideas written. Forgive me for being abrupt and perhaps harsh. Sorry about typos.

If you haven't done so already, make a written/typed list (it impresses doctors) of your symptoms, inluding how they impact your daily living and include the pain level on a scale of 1 to 10, with 10 being blinding pain.
Group your symptoms by system: all joint and muscular together, for example. Include start dates/year/age--For example- my hip pain started when I was 20 years old.
Put the worst/most intrusive/most painful group first on your list.

At your next doctor's appointment-- at all of them-- have 2 copies of your list. Keep one list for yourself and write notes about what doctor says on it. Give the other list to the doctor, and ask him to read it over before you start talking. You can say "Here is a list of my concerns."

I suggest that you start keeping good records of all of your tests and appointments and symptoms. Some people are OK with relying on electronic files. Mostly I prefer to keep paper copies and CDs of scans. I bring a tote bag with all my records to doctors appointments.

In my non-medical opinion, your doctors should be considering/eliminating the following diseases (sorry, this may be scarey-- remember, I'm not a doc and I'm typing fast b/c of my eyes)
These are where your syptoms and mine overlapp.
Arthritis group
Spondyloarthropathy (multiple sites of muscle-skeletal pain)
Ankylosing spondylitis - lower back and hip pain
Psoriatic arthritis- skin symptoms and joint pain
Instestinal issues- my rheumatologist says that mine gut issues are connected to my autoimmune disease.

***
Be aware that you may get mental health problems from all of the medical mysteries and gaslighteing. Anxiety and depression are common. I have a great therapist, who is great, I think, because she suffers from chronic health problems, too. Healthy people can be really clueless.

** I need to stop and rest my eyes. I hope I haven't scared you. I hope you feel empoweered to take some forceful steps (If you need to be pushy. maybe you won't need to be pushy with the doctors.)
Step one, get the antinuclear antibody test. Go to a good rheumatologist.

Best wishes. Be strong. Be not afraid! (Boy, I hope that I don't sound like a bossy, know-it-all jerk in this post...Your situation sounds like mine was 10 years ago)

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 1, 2023

@sissy38 You have a lot going on! Do these health problems come and go or are they always there? You might want to find an internal medicine doctor at a comprehensive medical center. They can look at the whole patient and try to figure things out. We’re not medical professionals so we’re unable to diagnose what is going on.
You posted under autoimmune diseases, do you think your problems are autoimmune related? If so, you’ll want to see a rheumatologist at a comprehensive medical center. Will you let us know what you find out?

REPLY
sissy38 | @sissy38 | Jun 1, 2023
In reply to @annewoodmayo "OMG! Sissy, you could have written my history! 1. You are not a hypochondriac! Don't let..." + (show)
@annewoodmayo

OMG! Sissy, you could have written my history!
1. You are not a hypochondriac! Don't let ANYONE gas-light you (tell you that nothing is wrong with you). This makes me so angry on your behalf.

Specialist doctors, in my experience, prefer to keep things simple for themselves by only focusing on their body part without considering the entire picture of your body.
And that's how they often miss systemic problems.

2. I am not a doctor, but it sounds to me like you might have an autoimmune disease or multiple autoimmune diseases.
Have you had any blood work done?
The first step blood work for autoimmune disease is called ANA for antinuclear antibodies. Your primary care doctor can order this test for you.
A negative (normal) result doesn't mean that nothing is wrong with you.
A positive result will make the doctors pay attention to your case and remove the hypochondriac obstacle.
A rheumatologist diagnoses and treats autoimmune diseases.
3. I have some more ideas for you, but my eyes are starting to bother me. I'm going to try to get all of my ideas written. Forgive me for being abrupt and perhaps harsh. Sorry about typos.

If you haven't done so already, make a written/typed list (it impresses doctors) of your symptoms, inluding how they impact your daily living and include the pain level on a scale of 1 to 10, with 10 being blinding pain.
Group your symptoms by system: all joint and muscular together, for example. Include start dates/year/age--For example- my hip pain started when I was 20 years old.
Put the worst/most intrusive/most painful group first on your list.

At your next doctor's appointment-- at all of them-- have 2 copies of your list. Keep one list for yourself and write notes about what doctor says on it. Give the other list to the doctor, and ask him to read it over before you start talking. You can say "Here is a list of my concerns."

I suggest that you start keeping good records of all of your tests and appointments and symptoms. Some people are OK with relying on electronic files. Mostly I prefer to keep paper copies and CDs of scans. I bring a tote bag with all my records to doctors appointments.

In my non-medical opinion, your doctors should be considering/eliminating the following diseases (sorry, this may be scarey-- remember, I'm not a doc and I'm typing fast b/c of my eyes)
These are where your syptoms and mine overlapp.
Arthritis group
Spondyloarthropathy (multiple sites of muscle-skeletal pain)
Ankylosing spondylitis - lower back and hip pain
Psoriatic arthritis- skin symptoms and joint pain
Instestinal issues- my rheumatologist says that mine gut issues are connected to my autoimmune disease.

***
Be aware that you may get mental health problems from all of the medical mysteries and gaslighteing. Anxiety and depression are common. I have a great therapist, who is great, I think, because she suffers from chronic health problems, too. Healthy people can be really clueless.

** I need to stop and rest my eyes. I hope I haven't scared you. I hope you feel empoweered to take some forceful steps (If you need to be pushy. maybe you won't need to be pushy with the doctors.)
Step one, get the antinuclear antibody test. Go to a good rheumatologist.

Best wishes. Be strong. Be not afraid! (Boy, I hope that I don't sound like a bossy, know-it-all jerk in this post...Your situation sounds like mine was 10 years ago)

Jump to this post

Thank you, I've had all the blood work done that my dr could think of it always comes back fine even ANA, My internal medicine dr says I'm his enigma, GI says nothing is linked, Reuhomatolgst says no arthritis and nothing he can do, My neurologist says my mane dr should be trying to see what's going on. It's like running in circles.

REPLY
gina5009 | @gina5009 | Jun 1, 2023

It sounds like you have a lot of connective illnesses. For example. Your weight gain, foot swelling, constipation, could me Medication. Some medications are noted for making you gain weight. Too much laxatives can cause any number of repetitive problems (non of them pleasant). Have you tried stool softeners? (ask your doctor about these) it is my understanding they can be taken on a long term basis, but you have to be sure they are not interacting with someother prescription Medication.

I think you present with SO MANY PROBLEMS that the doctors think (mental health problems) and go on to the next patient. I would suggest you write the list as previously suggested, but pick the one that is giving you the most pain or problem NOW. Try to get a disagnosis and treatment for that, and then go on to the second. Many, many years ago I worked for an Internist who was great, BUT, when we scheduled appointment they were normally for 30 minutes. He was always late, and patients would complain. His answer was always the same "I had a patient who needed my special attention today, next time it might be you".
Gina5009

REPLY
1 reply
annewoodmayo | @annewoodmayo | Jun 2, 2023
In reply to @gina5009 "It sounds like you have a lot of connective illnesses. For example. Your weight gain, foot..." + (show)
@gina5009

It sounds like you have a lot of connective illnesses. For example. Your weight gain, foot swelling, constipation, could me Medication. Some medications are noted for making you gain weight. Too much laxatives can cause any number of repetitive problems (non of them pleasant). Have you tried stool softeners? (ask your doctor about these) it is my understanding they can be taken on a long term basis, but you have to be sure they are not interacting with someother prescription Medication.

I think you present with SO MANY PROBLEMS that the doctors think (mental health problems) and go on to the next patient. I would suggest you write the list as previously suggested, but pick the one that is giving you the most pain or problem NOW. Try to get a disagnosis and treatment for that, and then go on to the second. Many, many years ago I worked for an Internist who was great, BUT, when we scheduled appointment they were normally for 30 minutes. He was always late, and patients would complain. His answer was always the same "I had a patient who needed my special attention today, next time it might be you".
Gina5009

Jump to this post

Sissy38, you poor thing! How frustrating/discouraging/crazy-making!

Gina5009, your strategy for Sissy seems great to me!

Sissy, I hope you can give Gina's plan a try. Sometimes, everything seems so hard... Good luck and peace to you.

Please keep us posted on your situation. We are with you in spirit!

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