Dr. Hive....very sick SIL need ideas and thoughts.

[ProudGrandma]

My SIL has been sick for over 10 years.  She has been officially diagnosed with migraine headaches, IBS and fibromyalgia....but honestly, I am not sure if any or all of this is even correct.  She has been on so many medications and dealt with so many side effects of the medicines....and then medicines to deal with the side effects....she has seen so many doctors and yet she is still very sick.  Not every day, but most days.  She hasn't had a job in over 10 years because she is sick so often.  When I say sick, I mean throwing up, diarrhea, headaches, soreness and the like. 

I am beginning to wonder if she needs to start looking at a completely different way of dealing with this....and I have heard that chiropractors can help with things more than bad backs.  Might this be worth looking into or am I chasing a dead end?  Might there be another thought to consider?

thank you for your thoughts. 

Edited June 29, 2022 by kfeusse

[Arcadia]

How many specialists is she seeing? Does she have a care team to coordinate care? My late mom’s rheumatoid arthritis medication side effect worsen her lung condition (bronchitis). While my mom was aware that every medication would have side effects, it was her cardio pulmonary doctor that mentioned that her RH medication is probably the main cause of weakening lungs. I had echocardiograms and my lungs checked during and after chemotherapy, had my dexa scan after. Cardio, pulmonary and bone health is something that is not obvious until things escalate. My uneducated guess is she might have allergies and/or drug sensitivities because throwing up, diarrhea, headaches are typical reactions for me if I have sensitivity to something. 

[Catwoman]

This may sound stupid, but has your sister ever been tested for tick borne diseases, like Lyme and others? 

I know it’s a long shot, but chronic Lyme can have bizarre symptoms, and so can a few of the other illnesses she might have caught from a tick. 

[Jean in Newcastle]

I have had fibromyalgia for over 30 years. I love my chiropractor- for my spine. I would not go to a chiropractor for anything outside of their trained specialty. I have however had some very good naturopathic doctors. Or she might look into a functional medicine doctor. 

[Rosie_0801]

Trauma can lead to autoimmune issues. People can be ill for so long they no longer remember how to feel safe being well, and other weird, unconscious stuff like that. I was reading a few books by Suzanne O’Sullivan earlier in the year. If trauma is a thing, chapters 6-10 of 'The Tao of Trauma' might be a place to start thinking.

Chiropractors are dealing with your nervous system. If any of your SIL's symptoms are a result of nerves being squashed by vertebrae sitting in the wrong place (which we might not feel because we're used to it, or pain receptors aren't getting squashed) then sure, a Chiro might help in some capacity. Trying is very unlikely to cause damage, except to the bank balance. My Chiro used sometimes to say that the adjustment wouldn't cure the problem, but it'd help the body be more receptive to the cure.

[Tap]

Has she seen a naturopath or osteopath? I would start there and re-evaluate what her diagnoses are and look for alternate forms of treatment. If Western medicine isn't being helpful maybe she needs to look into alternate therapies or Eastern medicine instead. 

I agree with Rosie that trauma (and stress) can both be debilitating and can lead to very real physical symptoms. Recognizing and treating trauma/stress can often relieve some symptoms (if not all---depending on the situation).  Then you can see the symptoms that have a physical cause more clearly and treat those more effectively. 

[Ausmumof3]

I am all for conventional medicine first but if it hasn’t helped in 10 years I’d try naturopath diet this things for sure. Is there any chance she’s got mould in her living environment?

[mathnerd]

2 hours ago, kfeusse said:

throwing up, diarrhea, headaches, soreness and the like. 

Others have suggested good options to look into. In addition, for the above, it could be due to bad gut bacteria overtaking the probiotic bacteria in her body. She could intentionally add naturally fermented foods with probiotics and a commercial probiotic supplement to her diet for a few months to see if they make these symptoms manageable.

[KidsHappen]

Fibromyalgia is a diagnosis of exclusion. Have they excluded everything else: Lyme, Lupus, MS, vitamin and mineral deficiencies, neurological or immunological issues? I have had CFS/Fibromyalgia for 20 years and sometimes it alone has made me feel pretty bad but I have also had many other problems as well. I see an osteopath as my PCP and he basically treats my symptoms and refers me to other specialists as necessary. I did go to a chiropractor for a long period of time but that was mostly to deal with my back pain not as a primary provider. In the past 18 months I have had six different doctors, several hospitalizations, a few major medical procedures and one operation. Basically we started with the most serious issues first and proceeded from there. 

I think she needs to start all over from the beginning with a good primary provider perhaps internal medicine or some other doctor that deals with whole body issues. She probably needs ALL the usual blood tests (CBC, metabolic panel, thyroid, vitamins and minerals, etc.), tests to rule out Lyme, autoimmune disorders, a neurological check, probably a check up with a gastroenterologist. Based on her symptoms she might want to get her gastrointestinal system checked to rule out celiacs, crohn's, a hiatal hernia, etc. If there is not a single overarching problem causing all of the symptoms treat the most serious symptoms first and then proceed from there.

 

[Soror]

I would look at a functional med dr mine is a d.o. I now see the NP in his clinic but they have been wonderful about looking at the whole body and listening to my symptoms.

[Eos]

Homeopathy has worked very well for my family. (My mother was born in a homeopathic hospital in PA 93 years ago!) I prefer classical homeopathy to naturopathic.  I also prefer MDs who only use homeopathy (rather than non-MDs) so that I know they know when it isn't the best option.  I've experienced a couple of truly remarkable cures using it and would start with that.

 

[Katy]

Chiropractors won’t help with any of that. I’ve had all of them and for me the primary problem was histamine intolerance. 

I’d order her some DAO from Amazon, have her try them and see if it helps. If it does she’ll feel worlds better on a low histamine diet. Unfortunately the lists aren’t exhaustive and they can vary by individual, so she’ll need to keep a food diary to figure out what she shouldn’t eat.

https://a.co/d/cpQJn4i

ETA: I’ve also had autoimmune issues, and a low histamine diet helps with that too, but it doesn’t cure them. 

Edited June 29, 2022 by Katy

[Pippen]

Has she been seen at a highly reputable medical facility, such as Mayo or Cleveland Clinic?

[livetoread]

1 hour ago, Pippen said:

Has she been seen at a highly reputable medical facility, such as Mayo or Cleveland Clinic?

Seconded

[ProudGrandma]

1 hour ago, Pippen said:

Has she been seen at a highly reputable medical facility, such as Mayo or Cleveland Clinic?

Cleveland Clinic and the Henry Ford Hospital in Detroit.  They just come away with a set of different meds, maybe a different diagnosis and a different plan...that never seems to end in a good place either.  

[Mrs Tiggywinkle]

My mom had migraines and IBS for decades until she was diagnosed with celiac disease.  Have food sensitivities and allergies been ruled out?

[ProudGrandma]

6 hours ago, KidsHappen said:

Fibromyalgia is a diagnosis of exclusion. Have they excluded everything else: Lyme, Lupus, MS, vitamin and mineral deficiencies, neurological or immunological issues? I have had CFS/Fibromyalgia for 20 years and sometimes it alone has made me feel pretty bad but I have also had many other problems as well. I see an osteopath as my PCP and he basically treats my symptoms and refers me to other specialists as necessary. I did go to a chiropractor for a long period of time but that was mostly to deal with my back pain not as a primary provider. In the past 18 months I have had six different doctors, several hospitalizations, a few major medical procedures and one operation. Basically we started with the most serious issues first and proceeded from there. 

I think she needs to start all over from the beginning with a good primary provider perhaps internal medicine or some other doctor that deals with whole body issues. She probably needs ALL the usual blood tests (CBC, metabolic panel, thyroid, vitamins and minerals, etc.), tests to rule out Lyme, autoimmune disorders, a neurological check, probably a check up with a gastroenterologist. Based on her symptoms she might want to get her gastrointestinal system checked to rule out celiacs, crohn's, a hiatal hernia, etc. If there is not a single overarching problem causing all of the symptoms treat the most serious symptoms first and then proceed from there.

 

I do not know if they excluded all of those things.  We live in Nebraska and she is in Michigan.  I am not really involved in her care...but I hear about it from her parents (My DH's parents) and I worry.   I am pretty sure Lyme has been excluded, but I am not sure.  I need to ask her some more questions. 

I have also thought that she needs to start over....she has had many gastrointestinal system tests....

I am also wondering if she might have some severe food allergies that have gone undetected all of this time.   

[ProudGrandma]

3 minutes ago, Mrs Tiggywinkle said:

My mom had migraines and IBS for decades until she was diagnosed with celiac disease.  Have food sensitivities and allergies been ruled out?

no I don't they have and I was just thinking the same thing....she can't seem to eat much without getting sick...so I am wondering more and more about this.  Where do we start to determine this?

[BeachGal]

Her symptoms sound like they could be the result of something going on in her gut, not just celiac disease but something with her microbiome. Univ of Michigan is one of the leaders in microbiome research so maybe she could work with an MD/PhD. Here is a link that could get her started. I'd try to find an MD/PhD. If they cannot take her, then I'd ask if they could recommend an MD who is knowledgeable about the microbiome.

https://medicine.umich.edu/dept/intmed/divisions/pulmonary-critical-care-medicine/research/microbiome-program/dr-huffnagles-lab-microbiome-research

[Farrar]

I knew someone who had a similar set of issues. She had also been diagnosed with fibro and was basically unable to go out. She made a decision to ditch Western medicine and it did help her. She started a huge regime of all kinds of stuff - yoga, acupuncture, chiro, radical diet changes, etc. And she was still experiencing a lot of chronic pain but it was much more managed. And then a few years into that journey, she had them test for Lyme and it turned out that was her culprit. 

I really second what was said above. I'm all for Western medicine, but when dealing with a chronic condition and chronic pain, some people do better with a radically different approach. 

I second all the people suggesting she look at microbiome stuff. I know a naturopath who specializes in fecal transplant who has helped a bunch of people in situations like this. But that may or may not be her answer. But I'd support her in changing course.

[cintinative]

1 hour ago, kfeusse said:

no I don't they have and I was just thinking the same thing....she can't seem to eat much without getting sick...so I am wondering more and more about this.  Where do we start to determine this?

There is a full celiac blood panel that they can run (assuming she is not already off gluten).  https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/    Also they could run the basic blood panel (CBC, iron, etc.) to see if any vitamin deficiencies show up. 

While they are at it, they can run the blood panel to look for some of the tick based diseases upthread.

(There is a symptoms assessment tool on that site I quoted and I put in just the things you mentioned and it flagged it as potential Celiac. I really would make sure she gets the blood test.)

Then if the celiac blood panel shows an issue, the gold standard is diagnosis by endoscopy. In her case, with the IBS, I am wondering if they have ever done one for her.  The thing is, if they aren't looking for Celiac specifically, they can miss it.

Edited June 29, 2022 by cintinative

[Kanin]

She can also get a celiac panel run on her own of the doc doesn't want to do it, or if she wants to hurry. I forget what the places are called that let you get blood work without a doc. 

[Arcadia]

5 minutes ago, Kanin said:

She can also get a celiac panel run on her own of the doc doesn't want to do it, or if she wants to hurry. I forget what the places are called that let you get blood work without a doc. 

Labcorp https://www.labcorp.com/patients/labs-appointments/labcorp-services/labcorp-ondemand

Quest Diagnostic https://questdirect.questdiagnostics.com/

[Carol in Cal.]

Of the alternative medicine practitioners, I would not start with chiro.  Rather I would start with acupuncture if available.  And then if that didn’t help I would turn to an NP.  In parallel I would try to get tested again for some of the excluded stuff, as those tests can be wrong.

[Arcadia]

2 hours ago, kfeusse said:

 

I have also thought that she needs to start over....she has had many gastrointestinal system tests....

I am also wondering if she might have some severe food allergies that have gone undetected all of this time.   

Has someone looked at all the tests? When I had a stack of tests run for juvenile arthritis in high school, I was a “case study” for the student doctors so many were reviewing my test results and they had to give their opinion. I find when tests and more tests are run, the big picture gets forgotten and only the latest tests get looked at. My first obgyn and first oncologist are really good at looking beyond their area of specialty, and take note of my asthma, anesthesia issues, anemia and what not when evaluating.
 

2 hours ago, kfeusse said:

no I don't they have and I was just thinking the same thing....she can't seem to eat much without getting sick...so I am wondering more and more about this.  Where do we start to determine this?

It is more or less elimination diet. I have latex sensitivity and bananas give me the runs while avocados don’t give me any issues. Some food would make me look like I have a pot belly and I would need ginger tea to help with the bloat. Ginger tea is also helpful for DS17 for stomach upset and headaches. I use instant packs but it is easy to DIY. Probiotics and yogurt is helpful for me but I don’t know if your SIL may be sensitive to yogurt. 
 

https://www.aafa.org/latex-allergy/

“Sometimes people with latex allergies experience a reaction to “latex reactive foods.” You may hear this called Latex-Food Syndrome or Latex-Fruit Allergy. Latex reactive foods include nuts and fruit, particularly:

• Avocado
• Banana
• Chestnut
• Kiwi
• Apple
• Carrot
• Celery
• Papaya
• Potatoes
• Tomatoes
• Melons”

[Anne]

Has she been evaluated for Crohn’s Disease?

Anne

[ProudGrandma]

1 hour ago, Anne said:

Has she been evaluated for Crohn’s Disease?

Anne

yes and she has that too....I forgot that one.  

[mum]

1 hour ago, kfeusse said:

yes and she has that too....I forgot that one.  

Are the meds for that working? It kind of doesn't sound like it. Is she happy with her doctor for that? If not, a good GI doc is pretty much a necessity with Inflammatory bowel disease. I was talking with a nurse practitioner in her 70's. She was diagnosed with Crohns in her 20's and has had 40 SURGERIES. They didn't know as much back then. I have IBD also and she always asks me if my meds are working and if my doctor is doing enough. She said that in hindsight she should have kept looking for a better GI doctor. Once she found one, she has been in remission. She nearly died from it all in her 20's. Now she's a vibrant 70 year old who can outwork me (49) at the community garden where we volunteer.

I know that it's hard to keep looking when one feels horrific. But if she is already diagnosed with Crohns and is still experiencing all she's experiencing, either she's got a terrible case, or her GI doc sucks. She may as well start by solving the known issue. There are plenty of great IBD docs out there.

[Arcadia]

1 hour ago, kfeusse said:

yes and she has that too....I forgot that one.  

@Faith-manor son-in-law has food sensitivities and she may know GI doctors in Detroit to recommend. 

[Anne]

12 hours ago, kfeusse said:

yes and she has that too....I forgot that one.  

Uncontrolled Crohns can cause many if not most of the symptoms you listed.  😞   And finding a good gastroenterologist that really knows Crohn’s can be very difficult.

Anne