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Anemic, Chronic Pain, Tmj, Celiac Disease, And Severe Hayfever. Difficult Times...


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#1 KnightRobby

 
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Posted 26 October 2013 - 02:17 AM

I was initially diagnosed with Celiac Disease exactly a year ago.  My blood work came back a positive but my biopsies did not, but I am told I still have Celiac Disease but they aren't 100% positive.  I know I have it.

 

I also have severe, chronic case of TMJ which causes severe pain in my entire left head - including the eye, jaw, and neck.  And I can't take pain meds because they affect me far to greatly.  In fact, I feel like they were killing me.  So pain management options are limited now.  And I've already done nerve blocks which didn't work.

 

And now I am also anemic and I'm taking these rough iron pills.  I'm exhausted and I can't think at all.  My total iron saturation is around 13%.

 

I've also got a severe case of hayfever from moving from Indiana to Arizona and I'm going through weekly allergy shots, which thankfully are covered by disability (so it isn't pointless, thankfully).  I've already had a reaction in my stomach, as if someone was punching me in the gut or squeezing my insides.  I've already been to the ER for problems breathing and severe stomach pain, all an allergic reaction to this new environment.

 

I seriously don't know what to do.  I think of all the things I have yet to do just for my illnesses and I have to do more research for Oral Surgeons, TMJ Doctors, and Neuromuscular Dentists.  And honestly, I don't see the point.  The treatments are NOT covered by insurance at all, and I am on disability.  I have no idea why I even got the darn disability at this point.

 

I could get surgery for TMJ, but no one wants to do that it seems.  And again, the NMD's do not take insurance at all, and the average cost is a whopping $15,000-$30,000 (and that is being generous with the estimate!).

 

And don't get me started on my social options.  I am completely confined right now to my home due to the allergies.  It is terrible.  I can't go out to eat or watch a movie.  It's either the food options are limited or I'm in severe pain, or both.  I haven't been able to carry a quality, normal social life in a long, long time.  Thankfully, my brothers are my best friends.  So at least I have that.

 

And I'm thankful that my twin bro Ryan is finally at a damn good job.  He deserves as much and I'm thankful for helping him get there.   But I suppose I am so tired of being tired and being in so much pain, plus having to deal with the doctors, phone calls, and planning...constantly with my health.  My older brother Ricky doesn't give a crap about money, so Ryan and I are constantly paying his bills.  I am so tired of it.  I am the one that is sicker than crap.  And I've never discussed any of this with anyone, to be blunt.

 

At this point, I'm seriously at a loss.  I've lost so much time and friendships and opportunities due to illness and have come up with ways of coping like staying distracted with movies, marketing research, Facebook, studying...but I'm in too much pain and too tired to carry on.

 

Anyway, that's life.  How does everyone go about coping?  I try to think of one simple task at a time, but this anemia crap on top of everything else makes thinking very difficult.


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#2 nvsmom

 
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Posted 26 October 2013 - 08:17 AM

((Hugs))

 

It's hard to cope when you don't feel well. Everything is harder. Getting out of bed, making coffee, carrying lazy family members... Drop the extra that are hurting you, if you can. If Ricky doesn't care about money, then don't pay all his bills. If he loses things and has bad credit, he'll deserve it and maybe straighten up... I know, I know, easier said than done with family, right?

 

How is your diet and sleep? I find I feel my best when I eat very few carbs and almost no starches - I had a ping pong sized potato about 3 days ago and that was it for the week. Proteins and fats keep me on an even keel but it's hard to gt to that point because I crave carbs (for energy?) when I feel fatigued. As for sleep, I'm sure you know it all - 8-9 hours per night. Take melatonin if you have a hard time getting to sleep. Exercise helps too.

 

I'm sure others will offer good advice on the other health problems you have; I don't know much about that so I'll keep my mouth shut except to say: Best wishes. I hope you feel better soon.


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#3 cyclinglady

 
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Posted 26 October 2013 - 01:18 PM

Sorry that you're feeling so poorly!  I think you'll feel much better when your anemia resolves.  I was diagnosed in March and I have finally stopped being anemic!  Yeah!  I took/taking iron supplements, ate iron rich foods and also take a few other supplements (calcium, magnesium, B-12,  a multi and probiotics) too.  

 

Coping?  Just one day at a time! 

 

Take care.


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#4 KnightRobby

 
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Posted 26 October 2013 - 03:57 PM

Thank you all for the responses. I've never posted something like my original post.  I am surprised that I even wrote it all, it was late, and this anemia on top of everything else truly makes me feel awful.  It exaggerates my chronic pain and everything else, plus I am so exhausted that simply doing my own laundry or fixing my own meal is a task.  I truly appreciate the comments and your words.

 

The nice thing is I do have a good doctor's office I feel.  My Allergist and the staff are all excellent and I see them every week for shots. Plus my brother Ryan and I are on the same page with many things. 

 

Cyclinglady, so you were anemic?  May I ask what your levels were at in March, especially your overall saturation?  And what dosage of B-12 etc are you on?  By the way, I noticed you mentioned calcium.  I found that really interesting because I understand that iron and calcium do not mix at all.  Calcium actually blocks iron absorption.  I'm thinking you took your calcium separate from your iron, but this is one thing that I am personally worried about as I eat all-natural, gluten-free cereal with Goat's Milk (which I happen to do good on).  I'll have to take more Vitamin C or something (which helps iron absorption).


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#5 Adalaide

 
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Posted 26 October 2013 - 03:58 PM

When I was at my sickest I could barely leave the house. As a matter of fact the only time I ever did leave the house was when I went to the doctor or pharmacy. It was rare for me to even go to the store with my husband any more. Life? What life? I lost every friend I ever had because I had no way to be a friend to them any more. And so, I found a new way to have a social life, which saved my sanity. People call it crazy, say it's no life, call the people who do it all sorts of horrible things but what choice did I have? I turned to MMOs. Well, lets face it everyone, at the time, played one MMO and that is where I went.

 

What I found there was amazing. I made friends. People I didn't have to tell I couldn't come out and play because I wasn't well enough. I had a digital me, I could do anything. And that was part of it too, I could do so many things that I just couldn't do in real life. More than anything though, I could be with people and with friends. I discovered also that there were a lot of people in exactly my position. I didn't necessarily meet them in the game, but through other means. People who took up gaming as a way to have a social life they were otherwise incapable of having. I've moved on now from that game, but I made some lasting friendships.

 

I'm still stuck at home more than I want to be, and I still play a lot of video games. Maybe MMOs aren't your thing, maybe it's FPS or something. You can still make friends and go around shooting people together. Or shooting each other. (Which probably sounds horrible to anyone who has no clue what I'm talking about, but be assured it's just a game. :lol:)

 

Anyway, it's how I stayed sane for several years. It gave me an outlet to be social in a way I couldn't otherwise be and gave me a whole and healthy digital body that was also a much needed outlet.

 

Also, if those pills are doing horrible things to you, ask about getting infusions instead. I did that several months ago because the pills made me so sick I was ready to stop eating. Plus it's faster and should get you to some semblance of feeling better faster.


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#6 cyclinglady

 
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Posted 26 October 2013 - 07:07 PM

If I recall, my iron saturation levels were in the normal range.  My hemoglobin was a 7 (range starts at 12 and up) and my ferritin (iron stores) a 2.  I had to take constant breaks and was out of breath just talking.   

 

I am taking vitamin B-12 (5000 mcg, sublingual), and the calcium is because I fractured a vertebrae in June doing nothing!  Many of our forum members have made excellent recommendations regarding supplements.  Oh, I do take my iron at night with vit. C just before bedtime.  I also only took one dosage even though my doc suggested a twice a day dosage.  I thought it was too much for my system.  It may have taken longer, but I was okay with that.  

 

Adalaide's suggestion for iron infusions may be a good thing to research to see if it's right for you.  


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#7 GF Lover

 
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Posted 27 October 2013 - 07:04 AM

Hi Robby,

 

I feel for you, I really do.  I can offer a suggestion for your pain.  A few years ago my Doctor told me about a device called Alpha-Stim.  You do need a prescription to purchase one.  It is used for a few different issues, Pain and Depression being the top two.  It works by delivering a mild electric pulse.  You might be familiar with Commercial Units called E-Stim being used for physical therapy.  This is similar but different.  If you do a quick search you will find information on it.  If you want more specifics about this particular device you can pm me. 

 

I do hope you can get some relief. 

 

Colleen


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#8 BelleVie

 
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Posted 28 October 2013 - 02:58 AM

hi KnightRobby. Regarding the TMJ, what exactly have the doctors told you? I'm so sorry you are dealing with this. I used to always say that I would not wish TMJ pain on my worst enemy. It's really awful. Is the problem with the alignment of your jaws? Is it stress related? I struggled with mine for four years before my doctor diagnosed me with something called "tongue thrust," which is where, for whatever reason, you have maintained what they call an infantile swallowing pattern. Basically it's where you never learned how to swallow your food properly, so your tongue is putting pressure in your mouth in places that it shouldn't and stressing your jaw and neck. I now sleep with a special bite guard that keeps my teeth in place and keeps me from grinding and popping my jaw out of alignment. I also saw a speech pathologist over the course of 6 months. She deprogrammed my habitual way of swallowing and re-trained my muscles in my face/mouth/tongue to swallow correctly. Have you looked into something like this at all? From the way you're explaining it, it sounds much more severe than what I dealt with, so I don't know if this is even relevant for you, but I thought I'd share just in case it might shed some light on something. 

 

I'm so sorry you are having such a tough time. It will get better. I am sending you some good vibes. :) 


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#9 cristiana

 
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Posted 28 October 2013 - 03:42 AM

Re: iron. Maybe something to consider, if you haven't tried them already.  I found most iron tablets actually hurt my stomach and upset it too, badly!  So my doctor told me to try ferrous glucanate as she says some people find them gentler on the stomach.    I was told to take two tablets first thing in the morning with a glass of water, an hour before eating.  Now, no more stomach pains or upset stomach.  And my iron levels have gone up ten points since diagnosis.   


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#10 Cary

 
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Posted 28 October 2013 - 07:11 AM

Hi! 

 

You are having a rough time.  The anemia is the worst thing, although vitamin D deficiency can also drain you some.  I would suggest supplementing it in the morning and also getting at least 15 minutes of time in the sun as possible each week.  I also take magnesium every morning and calcium at night.  I had not heard that calcium and iron were incompatible, but you can probably take them at different times and be fine.  Take the calcium at night.  


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#11 kareng

 
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Posted 28 October 2013 - 07:13 AM

Hi! 

 

You are having a rough time.  The anemia is the worst thing, although vitamin D deficiency can also drain you some.  I would suggest supplementing it in the morning and also getting at least 15 minutes of time in the sun as possible each week.  I also take magnesium every morning and calcium at night.  I had not heard that calcium and iron were incompatible, but you can probably take them at different times and be fine.  Take the calcium at night.  

 

Here is info on how to take your iron to be most effective.

 

http://www.nlm.nih.g...icle/007478.htm


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#12 Pegleg84

 
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Posted 29 October 2013 - 10:13 AM

Iron is absorbed best with vitamin c. You just shouldn't take iron and calcium supplements at the same time, or take your iron with a glass of milk or anything like that. Depending on how severe the anemia is, injections might be worth a shot (no pun intended). The other route is to take the most easily absorbed (ferrous glutamate is probably best, and is easier on the stomach) and take more of it. If you have Celiac, then absorbing vitamins can be difficult Talk to your doctor about what would be best. Anything below 12 for iron levels is anemic. I was down to 4 at one point, so yeah. No fun.

 

I have no advice on the chronic pain and other issues, other than to hang in there. I do know that my grandmother uses an electric-pulse type device for her pain with shingles, which does seem to help.

 

We're all here for you! Stay strong and good luck!

Hugs


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#13 KnightRobby

 
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Posted 01 November 2013 - 01:37 AM

I'm going to try to reply to everyone, as I really appreciate everyone's replies.  Bear with me...

 

 

When I was at my sickest I could barely leave the house. As a matter of fact the only time I ever did leave the house was when I went to the doctor or pharmacy. It was rare for me to even go to the store with my husband any more. Life? What life? I lost every friend I ever had because I had no way to be a friend to them any more. And so, I found a new way to have a social life, which saved my sanity. People call it crazy, say it's no life, call the people who do it all sorts of horrible things but what choice did I have? I turned to MMOs. Well, lets face it everyone, at the time, played one MMO and that is where I went.

 

What I found there was amazing. I made friends. People I didn't have to tell I couldn't come out and play because I wasn't well enough. I had a digital me, I could do anything. And that was part of it too, I could do so many things that I just couldn't do in real life. More than anything though, I could be with people and with friends. I discovered also that there were a lot of people in exactly my position. I didn't necessarily meet them in the game, but through other means. People who took up gaming as a way to have a social life they were otherwise incapable of having. I've moved on now from that game, but I made some lasting friendships.

 

I'm still stuck at home more than I want to be, and I still play a lot of video games. Maybe MMOs aren't your thing, maybe it's FPS or something. You can still make friends and go around shooting people together. Or shooting each other. (Which probably sounds horrible to anyone who has no clue what I'm talking about, but be assured it's just a game. :lol:)

 

Anyway, it's how I stayed sane for several years. It gave me an outlet to be social in a way I couldn't otherwise be and gave me a whole and healthy digital body that was also a much needed outlet.

 

Also, if those pills are doing horrible things to you, ask about getting infusions instead. I did that several months ago because the pills made me so sick I was ready to stop eating. Plus it's faster and should get you to some semblance of feeling better faster.

 

Actually, it's not crazy.  I really have learned not to give a care about what people think anymore (honestly).  I'm so sick that, yeah, I find enjoyment going online, talking to a group of friends, and just distracted myself with a good night of gaming.  Eating out is just not possible.  Going to movies is painful.  And talking with multiple people at once can be too much on me at times.  I think it is just the amount of pain from the jaw.  It's incredibly distracting.  But for some reason, online gaming is the easiest thing to do!

 

 

If I recall, my iron saturation levels were in the normal range.  My hemoglobin was a 7 (range starts at 12 and up) and my ferritin (iron stores) a 2.  I had to take constant breaks and was out of breath just talking.   

 

I am taking vitamin B-12 (5000 mcg, sublingual), and the calcium is because I fractured a vertebrae in June doing nothing!  Many of our forum members have made excellent recommendations regarding supplements.  Oh, I do take my iron at night with vit. C just before bedtime.  I also only took one dosage even though my doc suggested a twice a day dosage.  I thought it was too much for my system.  It may have taken longer, but I was okay with that.  

 

Adalaide's suggestion for iron infusions may be a good thing to research to see if it's right for you.  

 

I think Vitamin testing is so important.  Thankfully, B12 is fine right now (it's actually a little high)  I might also consider doing the iron infusions.  I'll have to call my doctor and ask him more about it.  Vitamin C with iron is something I am currently doing as well.  Good idea.

 

Hi Robby,

 

I feel for you, I really do.  I can offer a suggestion for your pain.  A few years ago my Doctor told me about a device called Alpha-Stim.  You do need a prescription to purchase one.  It is used for a few different issues, Pain and Depression being the top two.  It works by delivering a mild electric pulse.  You might be familiar with Commercial Units called E-Stim being used for physical therapy.  This is similar but different.  If you do a quick search you will find information on it.  If you want more specifics about this particular device you can pm me. 

 

I do hope you can get some relief. 

 

Colleen

 

I'll look into the Alpha Stim.  It was mentioned to me at my Chronic Pain doctor's office, but I never had the time to look into it as I was trying the TENS Unit (which is a joke for me).

 

hi KnightRobby. Regarding the TMJ, what exactly have the doctors told you? I'm so sorry you are dealing with this. I used to always say that I would not wish TMJ pain on my worst enemy. It's really awful. Is the problem with the alignment of your jaws? Is it stress related? I struggled with mine for four years before my doctor diagnosed me with something called "tongue thrust," which is where, for whatever reason, you have maintained what they call an infantile swallowing pattern. Basically it's where you never learned how to swallow your food properly, so your tongue is putting pressure in your mouth in places that it shouldn't and stressing your jaw and neck. I now sleep with a special bite guard that keeps my teeth in place and keeps me from grinding and popping my jaw out of alignment. I also saw a speech pathologist over the course of 6 months. She deprogrammed my habitual way of swallowing and re-trained my muscles in my face/mouth/tongue to swallow correctly. Have you looked into something like this at all? From the way you're explaining it, it sounds much more severe than what I dealt with, so I don't know if this is even relevant for you, but I thought I'd share just in case it might shed some light on something. 

 

I'm so sorry you are having such a tough time. It will get better. I am sending you some good vibes. :)

 

I could use the good vibes!  I need to get back to the Oral Surgeon and find a GOOD one.  At the moment, they all don't know what to do with my jaw.  It's incredibly frustrating.  I am hearing the mouth guard is important though.  What was your jaw problem exactly?  My left jaw dislocates in the closed mouth position with recapture in the open mouth position.

 

Re: iron. Maybe something to consider, if you haven't tried them already.  I found most iron tablets actually hurt my stomach and upset it too, badly!  So my doctor told me to try ferrous glucanate as she says some people find them gentler on the stomach.    I was told to take two tablets first thing in the morning with a glass of water, an hour before eating.  Now, no more stomach pains or upset stomach.  And my iron levels have gone up ten points since diagnosis.   

 

Okay, yeah I will definitely look into furrous glucanate.  I didn't know about it.  I don't know why these doctors don't mention stuff like this.

 

Hi! 

 

You are having a rough time.  The anemia is the worst thing, although vitamin D deficiency can also drain you some.  I would suggest supplementing it in the morning and also getting at least 15 minutes of time in the sun as possible each week.  I also take magnesium every morning and calcium at night.  I had not heard that calcium and iron were incompatible, but you can probably take them at different times and be fine.  Take the calcium at night.  

 

I have had Vitamin D defiencies in the past actually.  Right now, I am drinking Goat Milk, which is actually healthier than Cow's milk.  And it does seem to help my stomach from time to time.  But wow, it is expensive!

 

Here is info on how to take your iron to be most effective.

 

http://www.nlm.nih.g...icle/007478.htm

 

Thank you for the info!

 

Iron is absorbed best with vitamin c. You just shouldn't take iron and calcium supplements at the same time, or take your iron with a glass of milk or anything like that. Depending on how severe the anemia is, injections might be worth a shot (no pun intended). The other route is to take the most easily absorbed (ferrous glutamate is probably best, and is easier on the stomach) and take more of it. If you have Celiac, then absorbing vitamins can be difficult Talk to your doctor about what would be best. Anything below 12 for iron levels is anemic. I was down to 4 at one point, so yeah. No fun.

 

I have no advice on the chronic pain and other issues, other than to hang in there. I do know that my grandmother uses an electric-pulse type device for her pain with shingles, which does seem to help.

 

We're all here for you! Stay strong and good luck!

Hugs

 

Yep, I am currently taking Vitamin C (500mg) with my Iron.  I hope it is working.  It's a bit frustrating not knowing in the short term.  I have Terry's Nails and my pain has increased.  We'll see what happens as that is really all I can do right now.  I feel like I am doing everything right in terms of vitamins and nutrition at this point.  I can't believe you were down to 4.


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#14 GF Lover

 
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Posted 01 November 2013 - 03:24 AM

Another suggestion for you.  Have you ever taken papaya enzymes?  They are a natural Histamine blocker (may help with the hay fever) and an anti-inflammatory.  It can also aid in digestion.

 

Good Luck.

 

Colleen


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*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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#15 HavaneseMom

 
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Posted 04 November 2013 - 09:06 PM

Hi There, Sorry to hear you are having such a rough time. We have some similar issue so I though I would share what I have tried.

I have Hay Fever and sinus allergies and had read in a health magazine that drinking Green Tea can somehow help. I drank a couple of cups of Tazo Zen Green Tea everyday and it really did help after a while. I don't know the science behind it, but it worked for me. I have also heard a lot of good things about local honey helping with allergies. Something about the pollen in the local honey helps you build an immunity to the pollen in the air. I don't think it would be a overnight cure though, but might help after a few months and I also know some people with sensitve stomachs can't drink tea.

I have TMJ too with pain in right eye, neck, jaw and back of head. It's pretty frustrating because there doesn't seem to be much that can be done about it. I even had referred pain in my back teeth and had to have them pulled. I am a little hesitant to say this, but the only thing that actually made the pain go away for me was seeing a really good chiropractor. The chiropractor I saw did the smallest adjustment with his hand behind my ear and after a month or so the pain went away. I moved a few years ago and can't see him anymore and am hesitant to try someone new, so the pain came back. I have been to chiropractors in the past that seriously over adjusted me and caused more harm than good, so I haven't been brave enough to find someone new. There is also a book I bought called "Taking Control of TMJ" that has lots of exercises that you can do if you are interested in trying something like that. I have had this problem for about 10+ years now, and I hate to say it, but I have kind of gotten used to living with the pain and don't think about it too much, even though it is constant.

I have anemia too and did not want to start taking supplements because iron even in a multi vitamin has given me stomach pain in the past. I just started taking Iron Picolinate and I have had zero stomach upset. I am on my fourth day of taking this form of elemental iron and have had no problems. Just keep in mind that the dose that's recommended for "elemental" types of iron is much lower than other types of iron like ferrous sulfate. 325 mg of ferrous sulfate is equivalent to 65 mg of elemental iron. There are so many types of iron available that hopefully you will find one that works for you, just make sure you are taking the right dose because too much iron can be bad too.

Good luck and hope you feel better soon.
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama




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