In recovery. Too many symptoms. Autoimmune disorder? HELP!

Posted by Casey @caseygirlx0xmv, Oct 7 1:44pm

Since my sobriety of alcohol a year and a half ago after 10 years of abuse, I’ve been on a path to finding answers about my constant issues. Facial & neck swelling, gradually worsening over months- (esp when trying to exercise, seems impossible) painful , feels like I cant open mouth -my face will turn bright red & feel hot to touch(like flare ups)-w/ no temp.
Constant jaw pain (my face smashed into a rock wall 10 years ago, been to specialist who assumed TMJ)- the pain&cracking started instantly after incident&still have 10 years later. seems like it stopped cracking as easily exactly when my face started swelling 6+ months ago).
Constant hot flashes with minimal activity. Always feel like under skin is on fire (cant stand sitting in direct sunlight-dizzy&nauseous). Then sometimes I will get cold flashes where I feel freezing. Never inbetween.
And last but not least-Headaches& neck pain- comes in waves, but will last entire day. Feels like pinching.

Its always “too many symptoms at once” to bring to doctors. They will always only ever answer one of the symptoms, leaving out the rest. They do one test and when its negative thats it. No follow ups, no help. If anyone can relate to my experience with advice I would greatly appreciate the help. I am 25 years old, living clean and sober and ready to FEEL sober- I am sick of feeling sick!
Thank you so much in advance ♡

Liked by sunnyflower

Hi @caseygirlx0xmv, I add my welcome. First of all congratulations on being one and half years sober! That is certainly the biggest step forward for your health.

You do have a lot of symptoms and it can be hard to know where to concentrate first. To help you in your investigation, I extended the title of this discussion and added it to the Addiction & Recovery group and the Bones, Joints & Muscles group. I did this so you can connect with a variety of members who may have thoughts of where and how you can start to find answers. I'd like to bring @stsopoci @gman007 @thuts6818 @fourof5zs @lily2013 @basslakeview and @hotfooted into the discussion.

Here are a few discussions that may help you as you search for answers:
– Erythromelalgia https://connect.mayoclinic.org/discussion/erythromelalgia/
– Facial Swelling – no diagnosis after 2 years https://connect.mayoclinic.org/discussion/facial-swelling-no-diagnosis-after-2-years/
– Extreme jaw pain https://connect.mayoclinic.org/discussion/extreme-jaw-pain/

Casey, what type of specialists have you seen? Have you been to a major medical center like a university medical center or Mayo Clinic?

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@caseygirlx0xmv Hello Casey and a warm welcome to you! It is wonderful that you joined the group because you will find a great deal of support, encouragement, a lot of resources and a wealth of information via people's experiences and what they share here.

Congratulations on your sobriety! That is huge and I wish you the very best as you go forward using healthy ways to cope with life's trials.

It concerns me that you have had facial swelling and I wonder if you have had any tongue swelling at all? Usually this would be a 911 call if so. Some of your symptoms sound like angioedema to me but I am not a doctor and definitely encourage you to begin with your primary care provider.

Have you been to see a rheumatologist? If not it seems very prudent to be seen by one so I would ask your primary care provider to give you a referral.

I will be upholding you in prayer and to experience God's presence, comfort, and peace for your soul through Christ. This is what works for me as I walk through many fires myself. Many blessings, Sunny flower 🙏💐🤗 @colleenyoung

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@caseygirlx0xmv May I add my welcome to Mayo Connect, also. Your journey to sobriety is great, and must be frustrating to see these health issues present themselves. I cannot speak except for me, and suggest what I would do in your case.

Have a complete physical done, including hormone levels checked. As a young woman, and recognizing your addiction started during puberty, there may be some lasting effects from the drug-of-choice, whether it was alcohol or a hard drug of any kind. If you are near a teaching hospital, you may have better luck in finding doctors to address your issues. Let this baseline guide you where to go next, what kind of specialist may need to become involved. It might be a rheumatologist, or endocrinologist, or internist. Be upfront about your past, but don't let anyone put you down for it. Good for you for addressing these concerns!

Let me know what you decide to do, what you find out, please.
Ginger

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Hi Casey. Congratulations on your sobriety you have taken the first step towards better health. I too have suffered from multiple symptoms, this is very frustrating and confusing. Especially explaining all the symptoms to doctors who may or may not listen. After years, like 20 for me, I have dedicated myself, to myself. I am a natural giver to all things in life and this can take a toll on our bodies. I have been there for everyone and have tolerated my symptoms. Now, thanks to COVID I took a step back and stopped the madness. I found a wonderful registered nutritionist who has helped me tremendously. I quit the 1-3 glasses of wine a night, the stops at fast food places, eliminated unhealthy eating and have purchased most of my food that is organic and non-gmo. I would hear people talk about all this in the past and I always thought, “what’s the big deal, organic, just wash the fruits and veggies”’, But the only reason why I’m behind really clean eating now is because my list of erratic spontaneous symptoms is becoming shorter and I feel better. You have done really good already and you are still very young to where you can get this under control. Above all, you are determined to find answers. That means a lot. Never give up searching to feel better. If you have any questions regarding my experience I’d be happy to try to help you.

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First, Casey, I am very sorry for what you are experiencing! And, CONGRATULATIONS on your sobriety! I hope you have congratulated yourself…attaining and maintaining sobriety is hard work and well worth the efforts! In my experience, you have to advocate for yourself (or get someone who can do this for/with you)! Insist on being treated as a whole person and don't let your doctor stop at one of your symptoms. Sometimes, a myriad of symptoms can be related and often one condition can exacerbate another. Insist on your whole person being treated and don't take "no" for an answer!

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@caseygirlx0xmv I'm confident that you are seeking proper medical care. I encourage you to continue to work with your providers and rule out any “organic” source to your symptoms.

I’m wondering if you have considered that your symptoms could be related to P.T.S.D. and sobriety?

Here are a couple of websites that have great information related to P.T.S.D. symptomology and how the body changes after sobriety (a timeline).

-PTSD Alliance http://www.ptsdalliance.org/about-ptsd/

-Timeline: Brain, Body & Emotional Changes During Alcohol Recovery
https://www.amethystrecovery.org/timeline-brain-body-emotional-changes-during-alcohol-recovery/
There is an enormous amount of literature on the internet. You may consider, after doing some research for yourself, contacting a therapist. I would suggest a therapist experienced in both L.A.D.C (alcohol and drug) and trauma. Your therapist should be able to work alongside your providers. You may also consider attending groups such as, A.A. (alcoholics anonymous) or N.A. (narcotics anonymous). Providers and therapists are professional helpers but a group of peers that have “been-there-done-that”, can be a wealth of knowledge.

I know I threw a lot at you. Recovery is a process and abstinence is only the first step in a long journey.

I'm wondering if you would consider going to a therapist?

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@caseygirlx0xmv, I am so sorry to hear about your abuse. I too lived it. IAt the advice of a therapist I saw MANY years later, she suggested I attend a domestic violence support group. I did for 4.5 years and it was one of the best things I've ever done!
I think there are probably groups going on bc it is essential.
I hope that you will consider this. It was so hard to walk in the door for the first time but I learned so much and experienced so much healing.
The info for where you live should be available online.
I wish you all the best!! I hope you have a blessed day. Know that I will be praying for you, Sunnyflower. 🙏😊🌹

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@rossjt

First, Casey, I am very sorry for what you are experiencing! And, CONGRATULATIONS on your sobriety! I hope you have congratulated yourself…attaining and maintaining sobriety is hard work and well worth the efforts! In my experience, you have to advocate for yourself (or get someone who can do this for/with you)! Insist on being treated as a whole person and don't let your doctor stop at one of your symptoms. Sometimes, a myriad of symptoms can be related and often one condition can exacerbate another. Insist on your whole person being treated and don't take "no" for an answer!

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Well said! Sunnyflower

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@sunnyflower

@caseygirlx0xmv, I am so sorry to hear about your abuse. I too lived it. IAt the advice of a therapist I saw MANY years later, she suggested I attend a domestic violence support group. I did for 4.5 years and it was one of the best things I've ever done!
I think there are probably groups going on bc it is essential.
I hope that you will consider this. It was so hard to walk in the door for the first time but I learned so much and experienced so much healing.
The info for where you live should be available online.
I wish you all the best!! I hope you have a blessed day. Know that I will be praying for you, Sunnyflower. 🙏😊🌹

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ADDENDUM : one of the takeaways that I learned at my group was that when an abuser is abusing, their Vital Signs remain normal. It's been years and I can't stop thinking about that. I suppose this was referring to a psychopath abuser. Just an FYI. @caseygirlx0xmv @erikas

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@caseygirlx0xmv What caught my attention in your story is that you had an injury with an impact to your face. That can be the source of the redness and heat. I have a similar situation with my ankle turning colors and throwing heat because of a bad fracture and surgeries for that 5 months ago. I am still rehabbing and getting improvement.

The other reason you story resonated is because I am a spine surgery patient after having had a whiplash injury twenty years earlier that lead to a spine problem. Hitting your face on a wall will send an impact into your spinal column and could stress or change the way your skull sits at the top of the spine, and muscle spasms can keep it locked in a bad position. Has a specialist looked for a spine or spine skull alignment issue for you?

I would seek out a spine specialist with skull base expertise for an evaluation or one who works on areas above C3. There are some spine issues that can change blood flow to the brain, such as bow hunter's syndrome where the arteries that run along the spine get stretched because of misalignment and twisting of the upper cervical spine. This is a more difficult issue that needs real expertise above and beyond the more common spine procedures. There are also physical therapists who do cranial work. The skull has joints that can get stuck, and generally with misalignment, it can can tightness in areas where blood vessels pass. My recommendation would be to come to Mayo if you can because many spine surgeons out there will not work on the upper cervical vertebrae because of the risks involved. Mayo has many more neurologic and orthopedic surgeons with specific subspecialty expertise that you don't usually find elsewhere except in other facilities that hold themselves to these high standards of care. That is why you need the cream of the crop for a surgeon. You'll need an expert to order the imaging and understand the results.

I did have lots of issues with my jaw being too tight on one side, and in addition to my spine issues, I also have thoracic outlet syndrome that causes my neck and shoulder muscle to be too tight that has at times locked my neck and kept me from being able to turn my head. TOS restricts blood flow to the head and it gets worse when you turn your head. You could have that too. Some patients can pass out from TOS. Injuries can cause problems that need rehabbing, and mis-alignments cause restrictions, headaches and pain. I had spine surgery 4 years ago to fuse C5C6 and free my compressed spinal cord. I've been in physical therapy for the TOS and jaw tightness which has helped a lot. I think you are still suffering from the effects of the injury. It's possible that rehab now could be your answer without any surgery. Some of the restrictions can connect and pull on the dura which is the covering of the spinal cord and brain which causes pain and headaches. You should get an evaluation because in time, spine problems and bone remodeling can develop if there are uneven pressures on the endplates of each vertebrae (the surfaces that abut the discs). In other words, rehab now, may be able to prevent a bigger problem later that could lead to a future surgery. If your doctors are not considering a physical problem from an injury to the spine, move on and find another opinion. Let me know if I can answer any related questions.

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Wowzers Jennifer!! You've blown me away with your superior articulated wealth of information and knowledge here!!!

First let me say that I feel very badly about what you two have been through and are going through. My heart goes out to you both.

@caseygirlx0xmv I will be praying for the perfect doctor for you and the best treatment medicine and skill has to offer you.

I have had 3 major falls and a few not as bad. I was pushed down a full flight of hard stairs, fell down a full flight of wooden stairs, fell off a horse at a full gallup, was pushed down about 6 steps onto a frozen ice-covered ground, tripped and flew/skidded distance onto a concrete driveway, had a big rock thrown at the back of my head while trying to run away and flew to the ground. I also fell recently on my carpeted floor when my foot got caught in my bedskirt.

I 've had 3 lumbar surgeries, the 3rd was a fusion. A recent MRI shows pathology in my C and T spine. I have neck pain and jaw pain on one side. I was surprised to see that you have the same Jennifer!

I recently had a lumbar injection and on 11/11 am scheduled for a C-spine and occipital injection. I so hope they help my neck and right scalp (sounds a lot like peri-auricular neuralgia) for years which keeps me from getting the sleep I need!

I see my neurosurgeon on the 29th again for my "severe" spinal stenosis (lumbar area). I've got all the symptoms of equine cauda syndrome but thankfully there is a tiny bit of fluid around my spinal nerves so am not an emergent surgery right now.

I will be praying for you both for relief and healing.
Many blessings, Sunnyflower 🙏🌹🤗🙏🌹

Liked by Jennifer Hunter

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@jenniferhunter

@caseygirlx0xmv What caught my attention in your story is that you had an injury with an impact to your face. That can be the source of the redness and heat. I have a similar situation with my ankle turning colors and throwing heat because of a bad fracture and surgeries for that 5 months ago. I am still rehabbing and getting improvement.

The other reason you story resonated is because I am a spine surgery patient after having had a whiplash injury twenty years earlier that lead to a spine problem. Hitting your face on a wall will send an impact into your spinal column and could stress or change the way your skull sits at the top of the spine, and muscle spasms can keep it locked in a bad position. Has a specialist looked for a spine or spine skull alignment issue for you?

I would seek out a spine specialist with skull base expertise for an evaluation or one who works on areas above C3. There are some spine issues that can change blood flow to the brain, such as bow hunter's syndrome where the arteries that run along the spine get stretched because of misalignment and twisting of the upper cervical spine. This is a more difficult issue that needs real expertise above and beyond the more common spine procedures. There are also physical therapists who do cranial work. The skull has joints that can get stuck, and generally with misalignment, it can can tightness in areas where blood vessels pass. My recommendation would be to come to Mayo if you can because many spine surgeons out there will not work on the upper cervical vertebrae because of the risks involved. Mayo has many more neurologic and orthopedic surgeons with specific subspecialty expertise that you don't usually find elsewhere except in other facilities that hold themselves to these high standards of care. That is why you need the cream of the crop for a surgeon. You'll need an expert to order the imaging and understand the results.

I did have lots of issues with my jaw being too tight on one side, and in addition to my spine issues, I also have thoracic outlet syndrome that causes my neck and shoulder muscle to be too tight that has at times locked my neck and kept me from being able to turn my head. TOS restricts blood flow to the head and it gets worse when you turn your head. You could have that too. Some patients can pass out from TOS. Injuries can cause problems that need rehabbing, and mis-alignments cause restrictions, headaches and pain. I had spine surgery 4 years ago to fuse C5C6 and free my compressed spinal cord. I've been in physical therapy for the TOS and jaw tightness which has helped a lot. I think you are still suffering from the effects of the injury. It's possible that rehab now could be your answer without any surgery. Some of the restrictions can connect and pull on the dura which is the covering of the spinal cord and brain which causes pain and headaches. You should get an evaluation because in time, spine problems and bone remodeling can develop if there are uneven pressures on the endplates of each vertebrae (the surfaces that abut the discs). In other words, rehab now, may be able to prevent a bigger problem later that could lead to a future surgery. If your doctors are not considering a physical problem from an injury to the spine, move on and find another opinion. Let me know if I can answer any related questions.

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ADDENDUM : I forgot the car accidents I was in. One was a Ford van that hit a 12 foot high wall of snow and ice. The van rolled completely over and landed on its wheels. I ended up with my spine shoved against the space where the front seat passenger puts their legs with my legs and arms sticking up. Another one was when my sister drove us into a giant truck wheel. I was in the front seat. I was broadsided while driving a bolkswagon bug (pregnant rollerskate)! LOL! I 'm glad I told you bc it made me realize for the first time, how many injuries I' ve had so now I can tell my doctors. Have a good night, Sunnyflower @caseygirlx0xmv

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@caseygirlx0xmv

You have and are going through a lot. You have many good suggestions here.

If you are not happy with your general medical doctor. I would suggest changing doctors. You need a doctor who can coordinate your health care. I do agree you injury from smashing into a rock probably has something to do with what you are experiencing. Many symptoms related to such an injury may take months to years to raise their heads. I think you need scans.. ct or mri of your head and neck area. You need someone to do a thorough blood workup. .. check some of your vitamins.. for sure calcium and magnesium and your hormones (estrogen, thyroid and vitamin D).

I hit my face a couple of years ago.. hit it on the glass wall of the shower. My face hit at the upper right portion of my nose as it connects to the eye. I tend to have headsaches, but a couple of weeks after the injury my headache was constant. .. and nausea with them. About a month after the injury my eyesight blurred and all of a sudden sound was intensified about 10 fold. If I went to a quiet spot the sound would calm. Here I am over 2 years later and still have the sound problem, but not as often. The rest seems to have totally subsided. I was diagnosed as having a concussion. I injured my shoulder in a car accident and it did not hurt to start with.. a few months later and boy it hurt!! I am just saying sometimes symptoms can take there time showing up.

I also know there can be many different things going on at the same time. So having a very thorough evaluation is the only way to sort it all out. It will take one doctor to coordinate it.. to get you to the other doctors you need, test done, and to wade through any insurance you have. Of which it seems harder and harder to accomplish.

ZeeGee

REPLY
@sunnyflower

Wowzers Jennifer!! You've blown me away with your superior articulated wealth of information and knowledge here!!!

First let me say that I feel very badly about what you two have been through and are going through. My heart goes out to you both.

@caseygirlx0xmv I will be praying for the perfect doctor for you and the best treatment medicine and skill has to offer you.

I have had 3 major falls and a few not as bad. I was pushed down a full flight of hard stairs, fell down a full flight of wooden stairs, fell off a horse at a full gallup, was pushed down about 6 steps onto a frozen ice-covered ground, tripped and flew/skidded distance onto a concrete driveway, had a big rock thrown at the back of my head while trying to run away and flew to the ground. I also fell recently on my carpeted floor when my foot got caught in my bedskirt.

I 've had 3 lumbar surgeries, the 3rd was a fusion. A recent MRI shows pathology in my C and T spine. I have neck pain and jaw pain on one side. I was surprised to see that you have the same Jennifer!

I recently had a lumbar injection and on 11/11 am scheduled for a C-spine and occipital injection. I so hope they help my neck and right scalp (sounds a lot like peri-auricular neuralgia) for years which keeps me from getting the sleep I need!

I see my neurosurgeon on the 29th again for my "severe" spinal stenosis (lumbar area). I've got all the symptoms of equine cauda syndrome but thankfully there is a tiny bit of fluid around my spinal nerves so am not an emergent surgery right now.

I will be praying for you both for relief and healing.
Many blessings, Sunnyflower 🙏🌹🤗🙏🌹

Jump to this post

@sunnyflower Thank you. I don't really dwell on the problems, just the best choices I can make to fix the problems. I have learned a lot from my own experiences, my expert physical therapists, as an advocate for my elderly parents, and the biology degree I got years ago. I read a lot of medical literature to learn about my own physical issues, and being a creative person, I recognize and remember patterns which in this case are collections of symptoms. I learned a lot of human anatomy in biology and art school, so I think in 3 dimensions which helps me understand the physical problems.

I had only one cervical spine injection and will not do them anymore. I had a bad reaction with a paraesthesia that caused burning stabbing pains in my hand for a couple months because the injected fluid had nowhere to go, and cold sensitivity for a year and a half. The doctor was an anesthesiologist and he told me that spine injections should not be done above the C6 level because they were too dangerous. Ask many questions before you let someone do that and this is an off label use of steroids because they were not FDA approved for spine injections. You can look up a lot about that. The nerves that service your lungs emerge from the spine at about the C3 level which is why injections there are risky. The occipital muscles on the back of the skull can be very painful if alignment is askew in the neck, and that can be treated by a physical therapist. The joints of the skull can be out of alignment, a PT who does cranial work can help. The occipital muscles have some attachments that pull on the dura (covering of brain and spinal cord) which causes headaches. My PT explained that to me. I know it sounds funny to say this, but literally there have been times when my skull was not sitting straight on top of my spine, but slightly misaligned due to muscle spasms, so I didn't have my head on straight.

I guess we have a bit in common. My ankle fracture last May was caused by falling off a horse at a full gallop that had spooked because of a loose dog…. not my horse, but a borrowed horse because my old bomb proof horse was not sound enough to go on the trail riding trip. No more green horses for me! I have been in physical therapy for the last 2 months learning to walk again and trying to do it right and challenging the muscles to return. After 3 months of no weight bearing, my entire leg is smaller and weaker, but I am making steady but slow progress. My cervical spine issues were from a whiplash years earlier, and as a kid, I also fell on my face and broke my front teeth which caused many dental problems over the years. I'm still dealing with that too. Injuries cause many problems that can go on for years. I am doing well. We do have an amazing power to heal if we do the right things. Physical therapy and myofascial release has done a lot for me. Your severe spinal stenosis doesn't sound so good. I hope you get that resolved and recover. I'll be rooting for you! I hope you share your experiences here.

These articles can explain a lot. There are ones about axis/atlas instability C1 & C2, TMJ, Thoracic outlet syndrome, spine, etc. The are technical and long and written for physical therapists. https://mskneurology.com/category/articles/

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@jenniferhunter

@sunnyflower Thank you. I don't really dwell on the problems, just the best choices I can make to fix the problems. I have learned a lot from my own experiences, my expert physical therapists, as an advocate for my elderly parents, and the biology degree I got years ago. I read a lot of medical literature to learn about my own physical issues, and being a creative person, I recognize and remember patterns which in this case are collections of symptoms. I learned a lot of human anatomy in biology and art school, so I think in 3 dimensions which helps me understand the physical problems.

I had only one cervical spine injection and will not do them anymore. I had a bad reaction with a paraesthesia that caused burning stabbing pains in my hand for a couple months because the injected fluid had nowhere to go, and cold sensitivity for a year and a half. The doctor was an anesthesiologist and he told me that spine injections should not be done above the C6 level because they were too dangerous. Ask many questions before you let someone do that and this is an off label use of steroids because they were not FDA approved for spine injections. You can look up a lot about that. The nerves that service your lungs emerge from the spine at about the C3 level which is why injections there are risky. The occipital muscles on the back of the skull can be very painful if alignment is askew in the neck, and that can be treated by a physical therapist. The joints of the skull can be out of alignment, a PT who does cranial work can help. The occipital muscles have some attachments that pull on the dura (covering of brain and spinal cord) which causes headaches. My PT explained that to me. I know it sounds funny to say this, but literally there have been times when my skull was not sitting straight on top of my spine, but slightly misaligned due to muscle spasms, so I didn't have my head on straight.

I guess we have a bit in common. My ankle fracture last May was caused by falling off a horse at a full gallop that had spooked because of a loose dog…. not my horse, but a borrowed horse because my old bomb proof horse was not sound enough to go on the trail riding trip. No more green horses for me! I have been in physical therapy for the last 2 months learning to walk again and trying to do it right and challenging the muscles to return. After 3 months of no weight bearing, my entire leg is smaller and weaker, but I am making steady but slow progress. My cervical spine issues were from a whiplash years earlier, and as a kid, I also fell on my face and broke my front teeth which caused many dental problems over the years. I'm still dealing with that too. Injuries cause many problems that can go on for years. I am doing well. We do have an amazing power to heal if we do the right things. Physical therapy and myofascial release has done a lot for me. Your severe spinal stenosis doesn't sound so good. I hope you get that resolved and recover. I'll be rooting for you! I hope you share your experiences here.

These articles can explain a lot. There are ones about axis/atlas instability C1 & C2, TMJ, Thoracic outlet syndrome, spine, etc. The are technical and long and written for physical therapists. https://mskneurology.com/category/articles/

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@migizii in response to Jennifer Hunter: although I don’t write often, I deeply appreciate your insights and this recent post with the website to explore I believe gave me an “aha” moment after reading one of the articles! I am going to share it with my PT. It is about clenching your body when trying to do exercise, etc…..thank you❤️

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