Eating difficulties? Do you have any difficulty with chewing, biting silverwear, biting lip, or swallowing?

Symptoms & Treatments
1

Anyone have problem eating?

It is worse when I am tired, sometimes I am in slow motion eating because of the fatigue, but there are other times I have difficulties, too. I do have TMJ, so maybe that is what is causing some of this.

I have problems coordinating chewing sometimes:

* bite my cheek or silverwear (really hurts when I do that)

* bite my lip (the other day, I bit my lip lightly then really hard once, then I tried to eat very slowly and carefully, but bit my lip hard two more times, then gave up eating brats and ate some soft food instead really slowly and carefully).

I often have difficulties swallowing:

* choking on food

*choking on water

2

Hello Teri,

Yes I find that I bite my inner cheeks when asleep, am considering a mouth guard from the dentist as I'm not aware I'm doing it and it gets sore.

Also like you when I'm tired and not concentrating I easily choke and start coughing when eating, I have to think what I'm doing if I'm eating out or in company!!

My co-ordination when tired can be poor to and sometimes I miss my mouth and hit my teeth with the fork etc.!! and drop the food down my front!!!

Concentration when eating or drinking is the key, especially for me...............lol

Lucy xx

3

HI TERI IVE HAD SWOLLEN JAWS AND CAMT CHEW SOMETIMES ITS VERY SWOLLEN AND SOMETIMES ITS NOT OR IF IM IN A LOT OF PAIN I CANT CHEW VERY MUCH A FEW TIMES AND SWALLOW OR IF MY THROATS SWOLLEN HAVE A GOOD DAY

4

I have always had problems biting my lip or my cheek or tongue, ever since I was a kid. I don't do it all the time, but when I do it's like I can't avoid doing it again. I figures that was just me.

I do have trouble choking on food, eater, even my own saliva at times. My dad had the same problem the last few years of his life. I have never connected it with the fibro--he didn't have fibro at all--but it has started just in the last couple of years. I have to be really careful. I am especially bad to inhale a but of carrot I am chewing (I eat a lot of raw carrots).

Kimberly :)

5

Here I go with my EDS again. I know I jump in a lot but it gets missed a lot. I'm not a doctor so I don't know for sure. I do hang out on a lot of EDS support groups though and a lot of symptoms are discussed. Both TMJ and difficulty swallowing can be Ehlers Danlos symptoms. TMJ because it's a joint issue and difficulty swallowing because collagen can be weak anywhere.

http://www.dimensionsofdentalhygiene.com/ddhright.aspx?id=4356

http://slingsandarrowsofoutrageousfortune.wordpress.com/eds101/

The previous link is to an EDS patients blog. I added that one because it's often a lot easier to understand the symptoms and issues when they're written in plain language. This one is a medical site link that basically explains how swallowing issues can be related to EDS but it's written in such technical language that it can be hard to decipher. I know it made my head spin.

http://rheumatology.oxfordjournals.org/content/47/6/746.full

Like I said, I know I jump in a lot with my EDS stuff but I want to make sure this info isn't missed.

Hugs to all who need one and sorry if I'm a pain.

6

I have all the problems mentioned below except no T M J but do have ringing in my ears. I thought it might be due to ill fitting dentures. But dose not seem to be the case reading all the reply's. I do bite my tongue But when I do it very bad. Also choke on food. I usually inhale food and end up choking. I have a problem swallowing as well. I just can't seem to swallow the food. So I have to start all over. I bite my cheeks as well .Most of this leaves my mouth very sore. I am grateful For not having T M J . As I have enough problems. Just another thing to tack on the a growing list of problems. Be well .

Shirley


7

Swallowing I do have a problem with at times. I have to take a drink to get the swallowing reflex going on occasion. I never attributed this to fibromyalgia but mentioned it here one time and seemed others have this issue as well. I think there is a lot more issues like this that we don’t attribute to the fibromyalgia until you mention it here and realize others have the same problem. A lot more research needs to go into the fibromyalgia illness as a whole I believe but in these days of budget cuts we need to mention even the most weirdest things we would attribute to fibromyalgia to let others know

8

This is the Wikipedia page for Ehlers Danlos Syndrome. it explains the main six types. I have the hypermobile type. Hypermobility aka being double jointed is not a symptom of fibromyalgia. I've been super bendy my whole life. I could see the fibro when they diagnosed me with it, but I knew something else was going on. I have a lot of random joint dislocations and subluxations (partial dislocations) and have had those my whole life, especially my knees going out and knocking me to the floor. (not a fibro symptom) Since I've always done that, I didn't know it was abnormal. The last few years though, these symptoms and more have gotten worse.

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

I know people with the classical type and the vascular type but I definitely have hypermobile EDS. They used to call it type III. EDS is a genetic connective tissue disorder (it's a dominant gene but can happen randomly in a family with no history of it). It causes the body to make weak collagen which is everywhere. It's the substance our bodies use as "glue" to hold tissues together. Swallowing problems are common among EDSers but lots of other things are too. I have severe pain too. It's pretty much everywhere and down to the bone, like you described. I inherited EDS from my Dad who passed without knowing he had it. He'd had emphysema since I was little which one of my doctors said was likely made worse by weak tissue around the lungs. There is collagen in the fascia around the lungs. I have allergic asthma caused by the same kind of weak tissue. My skin is very soft and doughy, so about the only good symptom I have is that I look tons younger than I am.

This is another site that has a lot of info

https://www.edsers.com/

EDS doesn't show up in bloodwork as they're not testing collagen when they take blood. Early osteoarthrtis is another sign I have. It's in both knees, my right shoulder and my lower back. There is no cartilage in my right knee at all. I have fibro too but my Dr said mine was caused by the EDS. I was a "floppy baby" with low muscle tone. It took a long time for me to learn to walk. My handwriting is terrible but that's because my fingers are hypermobile. I can give you my yahoo IM but my facebook page is waterswaves if you want to ask me any direct questions. I'll put the link here to the Ben's Friends EDS group too. It's a newer group but as more people join more info is shared.

There are studies being done about EDS now. A geneticist is usually the one who diagnoses it. Most doctors know little about EDS so it gets missed a lot. There are a few specialists, Dr Tinkle in Chicago, Dr Francomano in Baltimore and Dr Levallee in Indiana. They have very long waiting lists and I couldn't travel to them, so I went to the University of Michigan for diagnosis. There are so many symptoms of EDS that it's hard to list them all. I made a checklist and wrote up a medical history of all possibly related conditions and symptoms when I went for diagnoses. it seemed to help a lot. I'm lucky in that I pointed out a few symptoms to my rheumatologist and she knew enough about EDS to refer me to U of M. She wanted to know why I hadn't shown her before but they were mostly issues I'd had my whole life.

http://www.ehlersdanlossyndromesupport.org/

Other things that happen with EDS a lot are, gastroparesis (the stomach and digestive system move too slowly causing other issues), IBS, GERD, livedo reticularis (I have this, its a lacy pattern on the skin that's caused by blood vessels not restricting correctly) joints that pop, snap, and crack a lot more than they should, severe pain, chiari malformation (this can cause headaches) thin skin, skin that tears easy, arthritis, fatigue, weakness, and more. Mast cell issues seem to happen a lot in EDSers too. Part of the problem is many people suffer from different combinations and severity of symptoms which makes it harder to diagnose. We don't fit in a "box". Some symptoms can crossover between types too. I hope I'm not scaring anybody but this gets missed a lot. Hugs to all that need one and feel free to friend me here or on facebook.

Susan W aka water

9

Yes, I bite my tongue, too, and the list does keep growing.

10

Lucy, I do all of that, too, and drop food down my front and everything, spill water, too.

11

Hi Terri,

I do have problems swallowing sometimes, and the new muscle relaxant tabs are large and round, even broken in half,, it's a tough one to swallow. I can attribute this to Fibro and also to Sjogren's Syndrome.

http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms

Hope you can get some answers and some relief!

Big hug,

SK

12

It does get bad, I have used ice on my cheeks a couple of times this week. It helps.

13

Kimberly,

I choke on saliva and inhale food sometimes too. These are supposed to be more autonomic functions, why do we need to try and think to eat?

14

Thank you Susan for sharing, and do not ever feel you are a pain, we are all looking for answers and someday what you share may give someone an answer. I have thought, maybe even known for years that I have something in addition to fibro. I have many of the symptoms of EDS, but not all of them such as my skin is actually more tight then loose. My mother and I had identical symptoms and she died of undiagnosed respiratory distress (they could not find the cause). My brother has many of the same symptoms as my mom and me as well, including a very weird one: clubbed and hammer toes. I will be looking into this. Thank you for sharing.

15

Thank you,

They tested me for Sjogrens years ago. but sometimes I wonder, because my salivary duct is not always working and I have dry eyes, too

16

My jaw locks sometimes and I can hardly open it… Or if it’s already slightly open it won’t open any wider???

17

I remember seeing clubbed foot as a symptom under one of the Ehlers Danlos types. If you Google Ehlers Danlos and club foot, a lot of sites come up. I'm not saying anyone has EDS but wanted to give the info.

https://thesethree.com/Ehlers-Danlos_Syndrome.html#.Ukta2D_5Fwk is one of the sites with club foot listed as a symptom.

Not all of the symptoms are present for everyone. My sister's skin isn't loose and not as many of her joints are as loose as mine. My skin isn't very lax but I bruise easy. One reason it;s so hard to diagnose is that there are so many possible symptoms and so many types of EDS. It's one heck of a syndrome. That's why I share is because I remember getting my answers and my aha moment. I was just happy to know that what I have has a name. Yw and thank you so much. Hugs hugs and more hugs

Susan W

18

It took several tests before it showed up at all, and it was false positive first. At that point my GP told me that it meant it would show up positive in the future, and it was sky high, still is!

Hope you DON'T have it Teri, but if you do, it's better to know!

19

hey,

I so know exactly how you feel about the swallowing part and choking. I went years without eating any solid food because i choked on a sandwich and they did every test there was and everything was normal and i still couldnt swallow, i even sometimes choked on liquids. Its actually an eating disorder, it just doesnt have a name for it yet. My drs and i tried to get me into quite a few treatment centers and no one would take me because i didnt have anorexia or bulemia. Now i have nurse that comes to my home twice a week reteaching me to eat again. It may sound silly because im 40 years old but because its been so long with no solid food it was like my body forgot how to swallow. But please dont ever give up on trying to eat and drink, especially your vitamins, they are SO imprtant! I almost lost my life this past june with a potassium level of 1.8 and spent 5 days in ICU. So even if you just have to crush your vitamins then please do and ask your dr to get someone to help you, never be afraid to ask for help because you dont want any of this to turn into a habit as mine as done. I had my angels with me that night but i know i may not be so very lucky next time. A home nurse can help you and give you advice that we cant, we can listen and try our best to help you through it, but please just try talking to your dr, youll be surprised at how much they will want to help you. Good luck sweetie. Whisper.

20

My Dad's lung doctor said the flap that moves between breathing and swallowing was not working properly. That was what he eventually died from :(