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Bone Pain

pondy

By pondy
in Coping with Celiac Disease

Recommended Posts

saintmaybe Collaborator
saintmaybe
Posted

The first time I remember bone pain was when I was, oh, probably about 17 or 18. I got absolutely crippling hand pain symmetrically when I went away to college in the first semester. Now I realize that it must be because my diet switched drastically from home, where we ate a lot of plain meat and vegetables as a matter of family choice (my stepdad has high blood pressure, so we always catered to his diet). When you're living in the dorms, you're obviously always eating easy mac, and ramen, and whatever else they serve at the cafeterias on the meal plans.

Over that first break they tested me for RA and carpel tunnel and Lyme and all sorts. All negative of course, and there was never any definitive diagnosis other than the mild implication of "Stop lying you hypochondriac."

Well. Now here I am at age 27, and I've always explained this intermittent pain in the interval as some kind of strange "arthritis," albeit one without a proper diagnosis. And indeed I thought that was the case. I thought that I had ruined my hands playing the flute for so long, and my grandmother has degenerative arthritis.

Now, I feel very assured that I'm celiac,even without a biopsy. Let all our stories to the medical community stand as testimony that maybe they should stop blaming us as a bunch of liars, and start taking our symptoms seriously.

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cougie23 Explorer
cougie23
Posted

I totally agree...I'm SOOOO sick of DOCTORS especially...(not to mention friends ,family etc.) looking and insenuating...I'm a hypercondreac...JUST because...THEY can't find something!!! Its like well DOC...KEEP LOOKING DAMN IT...SOMETHINGS WRONG!!!!GIVE ME A SUGESTION OF A DOCTOR WHO CAN!!!IF YOU WANT TO GIVE UP...JUST DON"T TELL ME ITS ALL IN MY HEAD!!!! :angry::angry::angry: !!!!!!

I've suffered for YEARS...because know one thought to ...Look a little more ...or sugest another avenue!!!(Funny it's when I didn't have insurence that we found out what was wrong with me!!!)

Its bad enough MY PARENTS never considered having me tested for FOOD alergies...BUT the DOCTORS should have known better!!!!All the stomache aches, the migraines,Athsma,allergies,focus problems,trouble learning,tring to stay awake in school,cramps,fainting,dizzyness,forgetfullness,bruising (was covered in bruses as a child..stll bruise at the drop of a hat!)all the physical and emotional pain....and after 41 years( the earliest I can remember symtoms started at 6)...NO ONE EVEN CONSIDERED testing me for food allergies!!!Most people have no IDEA what CELIACS IS...let alone..DOES!!! Not to mention the havoc caused by OTHER food sensitivities!!!!AAAAAAAAAAAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRGGGGGGGGGGGGGG!!!!!!!!

I feel so mad just THINKING ABOUT IT!!!! :angry::angry::angry::angry::angry:

I'm sorry guys...don't even get me started!My lower intestion HURTS SOOOOO BAD!!! I have "BEE STINGERS" in my stomache and intestonal track for the last few days...my Doc says its HIVES...HA HA...but seriously..the toxins pool down there during bouts of contipation..and I get HIVES....HURTS SO MUCH!!! I feel like crying!!!I get very cranky and over emotional...sorry to rant...sometimes we need to...its good to hear feed back...as you all know....this can get REALLY lonely and severely depressing!!!

other people can symethize...but for the most part...don't want to hear it!!! the only people who really get it ...are people who HAVE it!!! :(:(:(

its just soooo lonely! At least I'm not thought of as a hypercondract any more!

My brother actually had the NERVE to tell me...hours after going to the hospital ...that I'D NEVER BE HAPPY UNTILL THEY FOUND SOMETHING WRONG WITH ME!!!

what a F--ked thing to say...he didn't say that a month later when I was BACK in the hospital having a seizure!!! :angry::blink:

Sorry there I go again..just not my morning...

Yes I might have fibromyalgia...especially if long term Celiacs can contribute to it!

I definatly have nerve damage as well as bone pain...and the goose egg swelling I was describing..is slightly hard..but mostly soft...(and I get sharp shooting pains when I flex my fingers,turn my wrist,or bend my elbow)its not arthritis...allready went there! there is no joint swelling or tell tale redness(docs have eleminated that and reumatizm). I am still detoxing MAJOR...and its really hard to tell WHATS bothering me...But there is DEFINATLY a MALABSORBTION problem...I'm definatly deficent in a few things I'm sure...thats where you guys are REALLY HELPFUL!!! you know soooo much about Vitamins from your OWN experiances!!

THANKYOU for any feedback....It REALLY IS apreciated!!! :D

I might have a soy problem..never cared for the foods it was used as a substitute in...so I don't get that much..espesially now that I can't have ponzu or soy sauce with my sushi (because theres WHEAT on the label)!...the ocasional tofu...its hard to tell just yet...I'm still so toxic!!!

cougie23 Explorer
cougie23
Posted

I saw a chiropractor today who specializes in autoimmune disorders. He said that I have multiple neuro issues due to too many years of undiagnosed Celiac. Fibromyalgia is a

definite possibility. I will see him again on Friday & share all I learn from him about all our bone & nerve pain here... I still hurt but at least I found someone who has actually studied this disease - and who can shed a bit of light on all the mystery.

My brain is currently overworked, stressed out and otherwise foggy... sorry if this post reflects that.

Thanks so much to all of you - for your input & ideas & support!

I for one am looking forward to what he has to say!

My chiro sugessted fibro as well...but thats about as far as he would take it...are there any tests for this? what would I ask for if I wanted to go that way... :rolleyes::)

pondy Contributor
pondy
Posted
  • Author

I for one am looking forward to what he has to say!

My chiro sugessted fibro as well...but thats about as far as he would take it...are there any tests for this? what would I ask for if I wanted to go that way... :rolleyes::)

This new chiro seems so knowledgeable - he is also thorough and seriously listens to me. It is so refreshing.

I'll be sure to ask about "tests" for Fibromyalgia...

I'll take notes or something so I don't forget it all.

cougie23 Explorer
cougie23
Posted

This new chiro seems so knowledgeable - he is also thorough and seriously listens to me. It is so refreshing.

I'll be sure to ask about "tests" for Fibromyalgia...

I'll take notes or something so I don't forget it all.

Please do..THANKS!!! :D

AVR1962 Collaborator
AVR1962
Posted

Please do..THANKS!!! :D

Cougie23, hang in there. I do so know what you are saying about the support from family and friends, and I too have been to the docs repeatedly and feel I am not being heard. I have veen questioned my own sanity at times but what is going on is very real and there is a reason for all of it. I know someone who is celiac and we can chit chat forever and we understand each other which is great but really unless someone endures what we do there really is no way for them to understand. So most the time I stay quiet about my celiac. I actually started seeing a counselor several months ago before my diagnosis when I was at my worst and she has been a traumendous help. When our bodies are not well it effects everything about us and that is what I am really understanding now that I am feeling better.

The pain you have in your hands, by your description, is the very same pain I have and it hurts like crazy. I have found heat helps. Mine, I am very positive is from old injuries in my hand. I spent 6 months in physical therapy on this hand a few years back due to two fractures. The lump almost sounds like a water (liquid) filled growth which comes from clogged pores. A family member had one of these. They can be drained but they will refill. However, I would definately try and get an answer from a professional. I recently switched docs and I finally feel like I have someone who knows about celiac and how to proceed.

cougie23 Explorer
cougie23
Posted

Thankyou for talking to me!

Sorry this is a double post...when I tried to edit my first post(correct my spelling..) somehow I ended up with two...so instead of having everyone read the badly spelled post...I erased all but the thankyou part..because your not allowed to get rid of EVERYTHING and theres no way to get rid of a double post!!! LOL

sorry guys for this inconvinance!!! B):rolleyes:

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cougie23 Explorer
cougie23
Posted

Thankyou for talking to me!

For the most part...I don't get out much to even talk to people!except for my neighbor bill...he's a reflexogogist and a bit of a nutritionalist(that realy comes in handy...)

but he's very busy( really sweet older gentleman).My parents for the moment are curious( i've convinced my Dad to get tested...sorta...I KNOW he has Celiacs...he has CLASIC signs)...but tend to swing back and forth wether their even talking to us...(long story)..my brother...don't get me started!So that leaves my family...the 12 year old is great help..my little confedont and biggest fan,..my 21 yr.old..polite interest..easily bored...Husband...very suportive..other times...definetly NOT!!!Like you said...very frustrating!!! :(

The pain in my fore arms- I KNOW how I get it...its from OVERWORKING my arm!

I was wondering ,if ANYONE ELSE got that!the problem is that it doesn't take much.

Its the size of a goose egg...literaly!my hands start to shake..I have low trembling in my arms..the fore arms swell in that one spot (the length of 3"x2") ,pain shoots up my arm and through my hands...then my arm and hands get tingly...and if I don't stop painting..drawing..doing dishes..etc.,it all goes numb and I can't use them! THATS what I'm talking about! ;):blink: (its not a growth...but nice guess) this is something more devious :lol::ph34r::blink: Oh and I get the same thing behind my elbow... shooting pain right bettween the bones and the same type of swelling(above the elbow

about the size if a quarter..(but that whole muscle back there gets effected .Same thing happens right above both knees(swelling in a destinct lump and pain...swelling behind too, but thats probably due to severe varocose veins).The problem is I can't afford insurence right now...every thing is out of pocket! The mri was really expencive ,but I actually got a discout on it ..because I paid out of pocket! at least I was able to get the blood work done...thank GOD!!! or I wouldn't be here talking to you!!! LOL :lol::rolleyes::D

pondy Contributor
pondy
Posted
  • Author

Doc said that Fibromyalgia is a catch all phrase for any kind of nerve impulse mis-fire or disconnect... which is why it can present in different ways.

Chiro Doc also said that - contrary to what older research found - neurons CAN regenerate with treatment. I should mention that he has over 25 years of both Nero and Chiro experience.

Tests for "Fibromyalgia" seem to boil down to a very thorough neuro exam. Treatment is subject to the mis-fire and/or disconnect.

In my case it involves using a hand held massager to the lateral distal areas of my knee cap and then that same area of my ankle. The point is to retrain the brain - but the brain must do both the sensory input as well as the motor output,

which is why I can't just physically massage those areas. Ok, I think that's correct. All that for just one of my pains/issues.... and it may take months.

What I am getting is that nerve can be treated with physical therapies and that the neurons can recover - either regenerate if the damage is not too extensive, or, new synapses can be made

So, that's what I got. Hope I made sense. Please keep in mind that this is just one professional's thoughts & they may well be misunderstood by me.

ravenwoodglass Mentor
ravenwoodglass
Posted

Doc said that Fibromyalgia is a catch all phrase for any kind of nerve impulse mis-fire or disconnect... which is why it can present in different ways.

Chiro Doc also said that - contrary to what older research found - neurons CAN regenerate with treatment. I should mention that he has over 25 years of both Nero and Chiro experience.

Tests for "Fibromyalgia" seem to boil down to a very thorough neuro exam. Treatment is subject to the mis-fire and/or disconnect.

In my case it involves using a hand held massager to the lateral distal areas of my knee cap and then that same area of my ankle. The point is to retrain the brain - but the brain must do both the sensory input as well as the motor output,

which is why I can't just physically massage those areas. Ok, I think that's correct. All that for just one of my pains/issues.... and it may take months.

What I am getting is that nerve can be treated with physical therapies and that the neurons can recover - either regenerate if the damage is not too extensive, or, new synapses can be made

So, that's what I got. Hope I made sense. Please keep in mind that this is just one professional's thoughts & they may well be misunderstood by me.

I agree with your doctor as that was my experience. It did take a while as I had some nerves damaged in a way that caused pain and others that were basically 'dead' in other words the nerves were so damaged that no signals got through. For me the nerves that were causing pain healed first but the dead ones took much longer. Pain was relieved in a relatively short time, 3 to 6 months but nerve regrowth to permit normal use, in my case being able to fully move my leg and regain reflexes took much longer. Hopefully your pain will resolve quickly.

bny06 Apprentice
bny06
Posted

I am completely with yall on the forearm/hand discomfort!!! It started with a fatigued muscles on the top of my hands/forearms after typing at work (all fingers, not typical carpal tunnel like symptoms), and since I feel like my hands are weak and wrists hurt if i put my weight on my hands. It's like my muscles are not happy with me trying to overuse them on my arms- which is quite inconvient with two little ones and a job that requires a lot of dexterity! Is this how yall feel? like yall have bad muscle fatigue in your arms? I wake up at night sometimes with both of them achy/numb feeling too.. I started taking magnesium, vitamin D and getting some sun, in hopes that this improves! I also have muscle cramping too- do yall? I'm 3 weeks or so out on the gluten free diet, so this is all new to me and I feel like I have a long way to go to recovery!

pondy Contributor
pondy
Posted
  • Author

I am completely with yall on the forearm/hand discomfort!!! It started with a fatigued muscles on the top of my hands/forearms after typing at work (all fingers, not typical carpal tunnel like symptoms), and since I feel like my hands are weak and wrists hurt if i put my weight on my hands. It's like my muscles are not happy with me trying to overuse them on my arms- which is quite inconvient with two little ones and a job that requires a lot of dexterity! Is this how yall feel? like yall have bad muscle fatigue in your arms? I wake up at night sometimes with both of them achy/numb feeling too.. I started taking magnesium, vitamin D and getting some sun, in hopes that this improves! I also have muscle cramping too- do yall? I'm 3 weeks or so out on the gluten free diet, so this is all new to me and I feel like I have a long way to go to recovery!

Yes, I have muscle fatigue/weakness/pain/cramping that comes and goes...

I have learned from my Chiropractor that that particular phenomenon - at least for me - is due to my Ulnar nerve "firing" all willy-nilly. That nerve innervates the muscles of the forearm and the last two fingers, which is exactly where my issues are. My Chiro has adjusted my spine (T1 - T2 vertebral area where the Ulnar nerve originates) and I'm pleased to say that the issue have been resolved - at least for now. So, that issue was a nerve thing.

The Chiro/Neuropath told me that I have several neuro issues which are likely due to years of malabsorbtion. Currently we are working on some reflex-arc issues in my legs to help with balance issues.

Good news from him - I know I already mentioned this in an earlier post - neurons can heal and/or form new synapses with treatment (physical therapies, vitamin supplements, gluten free diet). There is hope for us all. Just may take some time to un-do all the damage.

As for the bone pain in my forearm and ribcage... I've heard that when the body is vitamin deficient - especially in D, Calcium - it will pull what it needs from "lesser" bones first. I've heard that many folks with deficiencies experience pain in the ribs and the ulna. Apparently, these are my bodies "go to" bones when I'm not absorbing nutrients. I got this info from a couple different sources - my former Anatomy professor and a Nurse Manager friend of mine. This isn't to say it's true. It's their opinions. Take it - or don't - for what it's worth.

All best,

Pondy

ravenwoodglass Mentor
ravenwoodglass
Posted

Yes, I have muscle fatigue/weakness/pain/cramping that comes and goes...

I have learned from my Chiropractor that that particular phenomenon - at least for me - is due to my Ulnar nerve "firing" all willy-nilly. That nerve innervates the muscles of the forearm and the last two fingers, which is exactly where my issues are. My Chiro has adjusted my spine (T1 - T2 vertebral area where the Ulnar nerve originates) and I'm pleased to say that the issue have been resolved - at least for now. So, that issue was a nerve thing.

The Chiro/Neuropath told me that I have several neuro issues which are likely due to years of malabsorbtion. Currently we are working on some reflex-arc issues in my legs to help with balance issues.

Good news from him - I know I already mentioned this in an earlier post - neurons can heal and/or form new synapses with treatment (physical therapies, vitamin supplements, gluten free diet). There is hope for us all. Just may take some time to un-do all the damage.

As for the bone pain in my forearm and ribcage... I've heard that when the body is vitamin deficient - especially in D, Calcium - it will pull what it needs from "lesser" bones first. I've heard that many folks with deficiencies experience pain in the ribs and the ulna. Apparently, these are my bodies "go to" bones when I'm not absorbing nutrients. I got this info from a couple different sources - my former Anatomy professor and a Nurse Manager friend of mine. This isn't to say it's true. It's their opinions. Take it - or don't - for what it's worth.

All best,

Pondy

For the balance issues if you can get a referral from your doctor, maybe from the chiro even, a physical therapist may be able to also help speed healing along. Glad to hear the chiro was able to help a bit and if that stuff starts happening again you can nip it in the bud with and adjustment.

pondy Contributor
pondy
Posted
  • Author

For the balance issues if you can get a referral from your doctor, maybe from the chiro even, a physical therapist may be able to also help speed healing along. Glad to hear the chiro was able to help a bit and if that stuff starts happening again you can nip it in the bud with and adjustment.

So true! I'll ask my primary care Doc. when I see her next month. Funny, I always thought I was just a big time klutz!

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