Bone Pain

[dizzygirl]

I have been having a hard time then usual deal with my bone pain..hte worse my pots and paralysis gets the worse my bone pain level is seeming to get.. and it was allready on an extremely high rating on that pain scale.. its beyond unbearable ...and there is very short breaks in between.. "spells".... a few days ago.. the pain was bad.. after a paraysis epsiode.. and that left me having a hard time walking.. and i could not use my right hand to write at all.. i could not bend my fingers to hold and pen or pencil.. that is just pathedic...

whatever is causing or creating or contributing to the pain pain is really affecting my freakin' feet...i'd say the majority of time these days that from my ankles straight thru everybone in my foot and toes.. feel like that they are broken.. and i cant bare weight down on them and 100% have to depend on my wheelchiar to get me around..and forget being able to wear shoes.. that is out.. i get alot of stares going out of my apartment in big blue bear feet slippers.. that are glittery by the way... but its all i can manage to stick my feet into...cant ear another shoe b/vc i cant handle the pressure on my feet skin or bones..

yesterday morning.. iwas released from the hospital again...thye loaded me up on fluids.. and friday morning i felt REALLY good! whic i was so incredibly greatful for.. b/c i was able to eat and drink with no pain or isck yucky feelings or choking..and i wasnt dizzy at all.. and could walk around with no pain or no usually potsiness ging on.. I was a very happy dizz yestrday morning..

I went home and enjoying being able to shower during the day... and wear clothes that ddint consist of jammies and nultiple layers of socks and then slipper socks..i even curled my bangs.. something that never happens these days!.. and to top it off.. i was able to fit into a pair of jeans that are 2 sizes smaller then I was wearing 4-5 motnhs ago!.. I've lost almost 20 pounds since about may of this year.. which is good.. b/c i need to.. but its the pots causing it not being able toe eat..

But ifelt great yesterdya morning... i layed down ealry afternon.. just b/c I had showered and all the that and didint want to over do it to fast.. so i layed down for a while.. and when i got up my b/f and i went to the pharmacy and the grocery store.. well about 5 minutes into the car ride..i started to feel kind of blah. so the seat went reclined...

30 minutes later...my brain started to feel like it was being squeezed.. and that caused all the bones in my head and face to hurt.. not a cool feeling.. along my jaw.. it felt like i had a really bad tootha che.. minus the toothache.. and the pain in my head causes my ears to hurt badly... awhile later.. the nausea hit

and then beginning at the base of my head/neck.. i got this wierd feelingin the back of my head.. and it caused this funky feeling thru out my entire body.. i felt it travel down my spine.. it caused a numb weakness thru my enitre body...it is a horrible feeling.. that i still have to a milder form this morning.. I also got this grinding popping sound in my neck it sounds like those pop rocks candies that you can eat.. and they pop away in your mouth.. fizzing.. like.. well it kind of sounded like that in my neck.. and it made me nausea unbearable.. and caused me to feel like my esopaugus was closeing..

we can home and i sacked out in the recliner.. and propped my feet up hoping that it would help.. and i just kept getting weaker feeling.. and i started getting the chills badly and then was shaking un controllable from the inside out.. i felt like i had the flu... and like my brain was just going to explode inside my head.. the pressure.. and squeezing was so bad..i actually considered going to the ER..(my least favorite place on earth)...i kept feeling like the recliner was moving backwqrds and i was going to tip over....

i took some tynelol and went to bed.. nothing helps with the apin or pressure and squeezing...iwent up and laid down.. and the pressure and stuff going on.. i tired closing my eyes.. and the muscle or something in my eyes where really tight!!!!!!!!! i couldnt close my eye lids!.. cant say i've ever experienced that.. but ok weird!!!

I slept a solid 12 hours straight.. and am ging to go back to bed shortly.. but this pain.. and ealing with the brain squeezing and presusre and that funky wierd numb-fuzzy-weak.. OMG i think i'm dying feeling is not cool at all.. and i'm not getting much of a break from it ever..

i'm hoping to be able to make my appoint in Long island in November.. there is somethign wrong with me.. either along with or seperate from pots.. whatever it is i cant handle it..i have long since bypassed my threshold for this pain...the pain with in the joint amazes me and has stumped so many doctors...

thanks for letting me vent folks..I keep falling alseep crying b/c the pain in my bones is unreal..after tci.. i'm unsure of where to turn for help...

i am greatful though for waking up friday morning and feeling well.. it those brief moments that i truly charish.. and dont take for granted...afew hours of relief is better then none at all..

apainriddleddizz

[willows]

Oh , dizzy girl..............reading your post my goodness we are so alike you and I , on another post ( think its my appetite poll one ) Bab's told me she had these leg pains, so I've asked her if they are like mine .

Do you feel like your ankles are broken ???

I also get this awful, awful face pain , jaw the lot and sickness , and those fizzy tongue things like you have sherbet in your mouth, neck cracking , blindness at night times , those awful feelings of flu that just hit you out of the blue, so many days have I spent in bed not able to stand upright because of this and what I hate also is the feeling that your throat is closing and you cant swallow , I choke on foods at times, tears streaming down my face , husband thumping me on the back ( which doesn't help)

my dear friend I know just how your pain feels , its as if we share the same body , I'm now on pethidine each night ( 20 mg slow release) and Morphine patches when I get like you and just want to curl up and fade away.

My heart goes out to you girl, NO ONE and I will repeat NO ONE will or can understand just how intense, this pain is .............it takes over your mind, body the lot, walking is chronic , I have a zimmer frame when it hits as I cant seem to get my legs to walk

Do your legs also become hyper sensitive to everything ? socks, sheets, blankets , just you touching them ????

I have tried everything I know to stop this and nothing works.........

Hot water bottle NO.

Heat all over my body NO.

Tipping the bed end up NO.

Rest NO.

Exercise NO.

The only thing is to' bite on a stick' , lay on bed and wait for this to pass...............however long .

You have my thoughts girl , and if you every get to a point that you need a good scream at someone or just go over it again and again I'm here for you ..........email me Willowbrookes@fsmail.net. anytime you want to I'll always be there for you .

You dont give in to this , you shout at it and tell it to ' ***s off and go away ' I shout and rage at my body sometimes just to let off steam at being like this , husband thinks I'm crazy , but I tell you it works

Thinking of you AMI ( willows)

[dizzygirl]

willows... yeah you describe it well dear.. and yes i become super hyper sensitive to socks blankets and anything rubbing on my skin.. like for instance.. last night i was so incredibly cold.. but i could handle the pressure of a summer blamnket on my skin..

do your toe and finger nails ever hurt alon with it?...and your hair roots and skin as well? and yes i more often then not feel as though my feet/ankles/wrists.fingers are broken... when in actuality they are not..

and you are so right that nothing that i've found on gods green earth..(yet) helps it....not pain meds.. heat nothing..muscle relaxers.. and now since they've seen that i'm allergic to so many [ain meds.. they are leary of giving me anything new to take.. not that i think it will help...

sometimes if i catch the pain like early.. i do mean early . sometimes dmerol thru an IV will help.. but that is rare.. and it only delays the inevitable..

thnak you willows for your support.. if i ever find out what this is or anything that helps its.. i will be sure to let you know dear.. you hang in there too dear..

oh do your docs tell you that they think you swallowing problems are neurological? i called my pots doc last week.. and he thinks my swallowing stuff is something neurological...what that something neurological is.. nobody seems to be able to figure that one out.. i've been in just the last 2 years or so to 4-5 different neuroligst and ben seen by a few in the hospital as emergency consults. thye all tell me that my case is too complicated and that they cant help me... boooooooooo

[willows]

SNAP................I was so cold last night ( feet , legs ) I didn't know what to do with them

I eventually wrapped them in a fluffy blanket and stuck them under the duvet ( 15 tog) and stuck and hot water bottle in between these two .........5 hours later they were lukewarm .............and some of the pain had gone . This leg/ankle/foot pain is such a bummer it really rules my life at times ans whn the sensitive thing gets bead , I get it on my ; face, hands, arms, legs and feet and it is AAAAAAAHHHHHHHHHH

even the air moving around my skin makes me feel sick.

Sometimes I feel like I have water running through my hair or fleas running about on my head ( no, I dont have either thanks ) I take Diazepam when I'm really bad to so called 'relax me ' the only thing they do is make me sleep

Your right , my doc's have no real idea why I choke , you see I'm not the sort of person who gets anxious or gets stressed over anything in fact according to my husband I've never gotten angry in all the 6 + years he's know me or lost my rag or got upset over anything which he would go 'hypo' over ............so 'all in the mind' has been ruled out by my doc and she thinks its to do with my whole body's muscles contracting , but in different areas at different time.................Errrrr yep 'I could have told you that'

Do you know the last time I went into hospital I was so ill;

heart beat at 38 and dropping , sweats, white as a sheet, in chronic pain, blood pressure in my boots, unable to speak , breathless ..............the first doctor went mad ordering every test he could think of , pumping me with pain killers ( ah, at last peace ) on monitors, drips .............you name it I felt like a medical experiment !

My the morning .............heart beat at 48 and skin looking better , no sweats , I'm feeling a bit better, like you do after fluids and the right heart drugs .............THEN this jumped up doctor who is also a Major in the army came in and asked me why I was there wasting their time and money

The nurses couldnt believe it my husband nearly throttled him and me ..................well I made him call me ma' **** and he went bright red when I cut him down a peg or two..................he had no idea what POTS is or how it effects the body , in fact he really needed to go back to medical school and learn some bedside manners or take up working with animals who dont answer back !

So the UK is no better , if you do get any info about this pain or sensitivity let us know .........I'm going to tell my doctor you are almost a twin so she will know its not just a one off with me !

Take care , keep warm, eat well and stay sane .............willows.

[persephone]

Hi Dizz,

Havent spoken to you in yonks- it's good to see you here tho I'm sorry it's not under cheerier circumstances

I wish I could make things better for you. I've been pretty rough this week too-- after the success of Monday and my bike ride, I fell and almost broke my arm on Wednesday, and now I can hardly move.

Just know that I'm thnking of you, sweetpea. Xx

[hopeful-girl]

OMG both of you describe it so well it is like I a mirror of both of you. Hey do you guys also get painfull teeth and gums. The way my gums hurt is hard to describe. It is awful. My POTS used to be the main issue years ago. However since I have gone to the extreme with my sickness. It is the muscle and bone pain and brain fog that gets the best of me. It islikeI cannot sit or walk or even lay down. My bones feel sharp like they are broken and they are stabbing me. It is so uncomfortable I just want to crawl out of my skin.

I just wanted to say thanks for postingand i am sorry you two are going threw this also. It is miserable. For me my oxycodone was workingfor awhile and now it is not. I have a high immunity to drugs and we tried the 100mc fentynal path and it did nothing.

So what works for you guys for th eextreme pain andhow much?

I wish you a restful and peaceful day

Corina

[Maxine]

Hey Dizz,

I'm sorry your having to deal with more problems. I hope TCI can help you with some of this.

Keep plugging along----you'll figure out a way to get there--------

I'm praying for you all the time..............

Hang on----the ride gets smoother...

HUGS,

Maxine

[BEE]

Just want you to know I am thinking of oyu Dizzaloo. Hang in there.

[willows]

I forgot to ask you dizzy have you also got this bleeding under the skin of your feet and legs ???

As for my teeth and gums , yep I get toothache in my teeth and were my teeth have been taken out ! ( wisdom's).

At night I can get off to sleep for about 30 mins then wake up suddenly with the most chronic sharp stabbing pain in my hip , just like I've been stabbed trying to roll over when your hands dont work is not fun and I have now got one of those metal bed side fitted so I can get my arm into it and literally pull myself over or across.

Pain relief has been a thorn in the side for me , like you Oxycodone works sometimes and others ...well I'd better to plant them in the garden and see if they grow!

I have morphine patches ( 3 day ones ) and on top of this I can add as I want to ...........northriptyline ( up to 10 ) and diazepam ( up to 4 ) so I play with the amounts ( always keeping a log in a book with date, time and quantity ) if you wonder why I do this log book ??? well if I do go down the proverbial pan in the night the hospital will have a record of what, when and amounts of drugs that have rattled down my throat !

I hope your felling a bit better today Dizzy , my feet are bleeding again .............. and slightly ( cough, cough ) swollen so I'm up off to the big squishy pillows on the upper floor for an afternoon of Jayne Eyre, a bar of chocolate ( tut, tut, tut ) and a cup of coffee and handful of drugs..............ah a nice Sunday afternoon in sunny old Devon by the sea.

Willows.

[Jeanie60]

Hi Everyone,

When I saw this post on bone pain, I had to chime in. I have rather severe Raynauds and I have dealt with a lot of bone pain. My docs were rather stumped as to what was causing it, but when my doctor started treating my Raynauds with a drug called Tiazac, the bone pain subsided greatly. I would get a lot of bone pain in my forearms and elbows. I still have some problems with it, but for the most part it is better while treating the Raynauds.

If you get pain in your arms, try going into your freezer and handling some frozen vegetables, meat etc. and see if it makes it hurt worse. When I went to my rheumy appt. this last week, I have also found out that I am getting infarctions in my toes. I didn't really know what that was, but anyways, I get these blood blister type looking things on the tips of my toes. It is because I am not getting enough oxygen to my toes. My Raynauds is rather severe in my feet as well as my hands. This can be rather dangerous as they told me that it can lead to tissue death. That was the blood blister like things I saw on my toes. Pretty scary stuff. Anyways, vascular problems may be something for you to think about and maybe do a little research on. I have not found anything on Raynauds that says it can cause bone pain, but with my history, it seems rather likely that my bone pain has been vascular. BTW-I am not sure if the infarctions are caused by Raynauds, but they are vascular.

Take care!

Jean

[willows]

Hi maggiemay ..............I've had Raynaud's since I was about 15 years old now and I had never thought that it could be this that is causing the bone pain in my legs . I have it in my feet , hands and the tip of my nose which makes me at time s look like I've either been on the drink to much or been crying all day ...................mmmmmm charming .

How are you today Dizzy , better I hope????

Willows.

[dizzygirl]

hi all wanted to pop in real quick.. and say hey.. I'm still in pain but it has lessoned some since i posted.. cant say that my feet are loads better.. but something is better then nothing..

interesting about the raynaurds.. i do have that..i will bring it up to my doc in a few weeks..

willows.. i get funny looking red tiny red things.. they are no bigger then like apoint of a pin.. or sewing needle.. i dont know what they are.. only that i get them primarily on my arms hands feet and sides of my face... i asked a doc once what they where and i got "an i dont know"

perse.. good to see you on here dear.. i read you recent funny post.. you have a way with words deary and crack me up!! hang in there dear!!

thanks all for the support....

HUGS to ya all

dizz...

[willows]

Sorry your still not feeling better Dizzy...........those pin-prick red dots are called 'Petechiae' if you type this into the net you should be able to get a photo up of it ..........its minute bleeding under the skin, ask your doctor about it , he should know .

My 'Dotty spots' are now half way up my legs, started just on the bit before my toes and have now spread , I also get swelling with it now and call myself 'troll feet' just looking for the hairs on the palms of my hands next ! Willows.

[LYNDA66]

Hi All,

I understand all to well about this bone and muscle pain stuff. My whole body hurts and my husband gets mad at me when I tell him to please not touch me it hurts. He looks at me like I am crazy. I have had to go to ER and they don't know how to treat people like us. I am really sad about all this stuff and I seem to be getting no where. I just want to know what is going on with my body and to know how to get back to as close to normal as possible.

I go to cardio today, my heart keeps getting into this weird beat and feeling. Its like it starts to get tachy and then the autonomic system says "no you don't" and pulls it to a stall. I get real light-headed and dizzy.

I lost a bunch of weight and now my diabetes is worse then before. I get really high mostly only after I eat and it doesn't matter how healthy it is and that is when this heart thing worsens then and then in a very short time I get really low and I don't get the symptoms until I am out cold on the floor.

I am having a real hard time with all of this and I still don't have all the diagnostic stuff yet only that I have "dysautonomia" Very low BP's and HR, fibromyalgia, CFS, Vasovagal Syncope and diabetes. How do you guys get this stuff and the bottom of your posts?

If anyone wants to email me phlebolady@gmail.com I am a phlebotomist when I can handle working.

[Dizzy Dame]

Linda,

I'm so sorry to hear this pain is continuing. Hopefully they'll be able to figure it out in November when you go to NY. In the meantime, can't they give you something to help with the pain when it gets that bad? It seems cruel that doctors would make you have such horrible experiences and do nothing to help!

Hugs,

Lauren

[Babettegall]

Wow, I'm surprised by how many responded in great detail about the darn leg pain (or various pains in gerneral).

My head is pretty mixed up right now from reading all the responses, so I can't really go back and pin point who said what, and who's points I'm trying to respond too..........but, I have to chime in.

In a very sad way (you all know what I mean), it's good to know that I'm not alone in this. The pain has been the most unbearable pain I've experienced. I'm so thankful that I haven't had any jaw or tooth pain, but I have had facial muscle pain before.

I see my doc again next week, and am hoping to try something other than the Lyrica and vicodin he's prescribed for me. The Lyrica is helping with the burning sensation in my legs/feet, but not touching the deep, aching, sharp, stabbing, pain in my legs.

I'm not looking forward to the doctor and office staff looking at me like I'm some sort of pain med junkie either. Please, oh please, just help me get comfortable.!!!!!! If they only understood what it's like to live like this day in and day out. Let's also remember that this is only ONE of the unpleasant symptoms I/we are dealing with.

I have never been tested or dx'd with rynauds (sp?) before. Sounds absolutely awful! But, I can tell you that when I deal with anything from the freezer, refrigerator, or even cold water, my entire arms ache.......does that make sense? I'm also finding it more and more difficult to have anything touch my skin on my legs/feet when the pain is at its worst. Just having my legs touch each other sends the pain off the scale!

Sorry for throwing my own little "pitty party" while trying to respond to this post, as that wasn't my intention.

Maybe through all our sharing we will find that there is something connected to all this pain, and find a way to ward off or lessen the intensity of the pain. I dunno, just hoping, I guess.

Thanks for listening.........

Babs

[dizzygirl]

babs i feel your pain litterally..i wish i had something to offer you other hten some hugs and understanding!

LYNDA-- i too have a hard time differentiating between my diabetes and pots.. among other things going as to what is making me feel rotten.. or what triggers what.. my sugar gets at its highest after i faint or paralyse.. it generally run about normal..other then the fainting crudd..

dizzydame.. hi fellow dizz!!!! i have tried SOOOOO many pain meds.. i have yet to find anything that helps.. currently am trying SOMA for the pain.. it helps me sleep but thats about it..

willows.. so there is a name for the feaky dots?.. now do you have the reds.. along with TONS of purple dots .. i have "dots.. that are purplish looking.. covering my legs..booty.. and upper arms.. and when i stand or get over heated they turn REALLY REALLY purple.. almost blue in color.. along with the red dots..

I always thought that the freaky dots where some genetic thing b/c my mom-aunt female cousins (a few of them) and gramma.. and me.. we all have the darn dots!... all the women i mention are realted thru my mom.. moms mo and sister and nieces..

pain is a bit better today..

[willows]

Bab's , it sounds to me you have Raynaud's , I was tested by Professor Carol Black years ago when she was just a junior doctor , they did cold air blowing onto my hands and ( this was the worst thing ) they dipped my hands into iced water , then used this special camera to photo them they came out almost black at the ends of my fingers then working your way down the fingers and hand ; purple, blue, green yellow, orange and finally red at my wrists

!

I cannot go into the freezer as the pain is so bad I can almost pass out with it so there I am in the outside shed ( we keep our main freezer there) all togged up come Summer, Autumn or winter in hat gloves and scarf around my nose ! talk about looking silly

I also have 12 hats , 9 scarfs and 22 pairs of assorted gloves, mitts and mitt/gloves scattered about the car, house and outside sheds . !

Dizzy........... I have purple spots on my arms and legs ( all down the front of them ) when I get cold these get very purple and in the summer they go bright red , my arms are also swollen from the elbow to the wrists and if I cut or scratch myself I get a very visible scar which never goes away ...........this is also due to circulation problems , along with this dam pooling of blood I get in my feet if I sit ( like now ) my feet will go almost mottled mauve/grey /purple colour , as seen my husband , who then shouts at me ' feet dear , feet 'and I have to start stamping them up and down

If I stand to long ( ha , ha, ha ) the blood pools in my feet and I start to feel .................I'm about to visit the floor for a close inspection of the cleaning process today !

so I've learnt a trick ..........stand feet apart and rock from side to side .......... making sure that your soles of your feet leave the floor each time ....it's pumping the blood back up your legs .........yes, it does look like you want to go to the loo , but who cares as long as my feet stay nice and pink I dont mind the silly stares.

I do hope you get some help with your pain Bab's it really is rotten, I spent another 5 hours last night legs going this way, that way and almost standing on my head in order to stop it , nothing really works for me and I normally just go to sleep in the end through sheer exhaustion .

Take care , think of you and wishing you a better day . Willows.

[nantynannie]

Hi All,

I usually don't post, but after reading this topic I have a question...I have terrrible aching leg and sometimes arm and full body pain every day. Before I started on pain meds I seriously considered that I did not want to live through the pain any longer. As I've previously mentioned my doc finally diagnosed vasculitis which some of you sound like you might have especially those with the red spots and Reynaud's. My question though is, are any of you on pain medication? I know I fought medication of any kind to the bitter end, but at some point, the pain won out. It does not by any means take the pain away but makes it more tolerable. I'm just wondering if I'm the only one. Thanks.

Ann

[willows]

Hello Ann, nice to natter to you .

I take pain meds every day without them I couldnt function at all , my meds are ;Oxycodone slow release 20 mg and at night I now take 40 mg + of Nortriptyline . ( my full list of meds are at the bottom of the post , I do have to take loads now I'm afraid )

When the pain goes OTT I have morphine patches on ( 3 days ones ).

I also get chronic pain all over and at times feel like I have the most chronic flu ,my body doesn't just ache it hurts so much I just dont know what to do with myself , I end up in bed for 3-4 days on Morphine .

Yep, your right it never kills the pain as such ( unless you get given the oral morphine in hospital) but it does give me some pain relief.

I'm going to have to look up this Vasculitis condition and see what it is , sounds strange that you have the red spots and such.

Hope your felling a bit better now that you have some pain killers in your system , I know its hard to have to admit that you have to take something just to get through the day , but I look at it this way , without painkillers I dont have a day .......just 24 hours of solid pain with me constantly thinking of it , at least with painkillers I can manage my day and forget about the pain for a while , making me feel at bit more myself again ( even if I'm trying to fool myself ).

Willows.

[dizzygirl]

Hi I have tried many many narcotic pain meds.. and muscle relaxers and anti inflammatorys.. nothing helps...

the only thing that takes the edge off for me .. mildly.. is Toradol...if i catch the pain before it gets to too bad.. and demerol given thru IV both of them..

I see my PCP soon and i'm going to talk to him about something stronger once again..

[nantynannie]

Hi Willows and Everyone,

I am also on Oxycodone ER 40mgs twice a day. It is just enough to make things bearable most of the time. I think it is more than coincidence that so many of us have this pain. Many docs tried to RX me with Fibro until they found the Vasculitis. Maybe it has to do with the circulation and blood pooling related to POTS. I guess the vasculitis that I have is an inflammation of the small blood vessles and capilaries. I wonder how many of us have the Fibro or CFS RX? I think this question has been asked many times in the past.

It is so strange to have gone for so long with about 25 CRAZY, seamingly unrelated symptoms like POTS, tonic pupils, and flushing, you name it, none of the docs could figure it out except to tell me that I was crazy or depressed. Now, when I read these posts it is like reading the story of my life. I wish Dysautonomia was a more recognized illness, but I thank God I finally found a doctor who does not think I am crazy. This is what I wish for all of you. Meanwhile, it is comforting to know through this website that none of us are alone in this.

Ann