Check in for those not yet diagnosed

[cricket52]

Hello medical mysteries:

What a great thread we had going with everyone last week. I must admit the more I hear from others the less I feel isolated and weird.

It's been one of the best weeks I have had in almost a year. Hardly any pain, minimal brain fog, no naps (!). A few charley horses in my one leg when I walk on uneven ground or in bed. That's a first, I wonder if it is something I am not getting in my diet or if it is just spasticity. Oh well, if that's all I have to complain about then I need to get a life.

Love how many of us have been labelled fibro. Don't know about the rest of you, but I don't have a single trigger point. I was labelled IBS too with no real history taken. The depression I will admit to, it was severe and by far the worst 'symptom' I had for years. I would sooner have physical pain any day.

Just made an interesting typo - did you ever notice that physical and physician are only a few letters apart. Physician pain we have all experienced. :p

[pals1107]

Physician pain

YOU BET, I have this DX! You feel it in your *ss!

THanks for the laugh.
Pat

[Barb]

Cricket

Well I was dxd with IBS after they actually caught my spasms on a lower gi back in 86. What a fun ride that was on a tilt table. They figured it was caused from my surgery that I had a few months earlier for a tumor removal (benign) and endometriosis.

So unlike most that are labeled with IBS without history taken or proof of it, they actually had the proof that I had it on x-rays. Think it shocked the technicians cause they wanted more pictures ......... lol

Been lovely weather the past couple of days here in Oklahoma. But we have a threat for some severe weather this weekend. What else is new - been about every weekend since sometime in January. This time not ice, snow, or sleet - they are saying thunderstorms (I can sleep good) and possibly tornados(I will watch the weather on this one).

This week has been good - only bumped my knee this week. HUbby seen it and then kept reminding me that there was a coffee table there when ever I got close to it. lol Still taking some long naps - but they are not has bad as before - some days not laying down until later in the day. Maybe I an enjoying the sunshine to much. hehehe

I have had more pain in the bottom of my feet (I know strange) and my shin areas this week. Don't know if this is from the PN or not. Never had pain in the bottom of the feet before - so this is totally new to me. Already have appt with neuro set up for the 8th. May just be with the synthoid that my meds need to be adjusted. *fingers crossed* It is also getting to where at times it hurts just to have cloth touching my skin on my legs.

Other than that - with my spasms in my back - seems my furry little cats know when they are bad - because at night they will curl up to my back and normally in the morning they will be better. Of course means I am awake off and on during the night. lol

[Whisper]

hello everyone,
G*d, I feel awful. Been coming on for a week or more, but yesterday, it hit with a vengence.

Been using my walker yesterday and today...legs are soooo weak I can barely get around.

Tremors are really bad and spasms in my shoulders, back and legs are really starting to tick me off!

I feel so useless. Kids made dinner yesterday. Thank heavens. Hubby's turn today. How do you people who live alone manage when things get really bad like this? I certainly don't envy you.

Anyway, I wasn't around last week, I kept trying to stay away but, I'm here. Will likely be here until the end of time! :D

Thanks for listening to me gripe.
Lorraine:)

[cricket52]

Whisper:

Oh dear. Sorry you are having such a rough time of it.

Knowing how you feel about doctor's I hestitate to mention this, but I will cause it's a mom thing - did you call your doctor?

Not that he will do much, but maybe if he sees you in such bad shape he can at least document it. I know mine doesn't believe me even when he does see it. The last time he did my neuro exam 4 times - like I was faking it each time.

Both times I put my emergency care plan into effect for my daughter only to have it fall through. The last time I sat in a chair (she won't let me lie down, it makes her anxious) too weak to get up. She fed me her Halloween candy. I was more worried about her than me. I know you are concerned about your family too.

Please don't stay away - we care about you and want to see you get some serious support from your doctor, if he can't/won't, then we will.

[Whisper]

Whisper:

Oh dear. Sorry you are having such a rough time of it.

Knowing how you feel about doctor's I hestitate to mention this, but I will cause it's a mom thing - did you call your doctor?

Not that he will do much, but maybe if he sees you in such bad shape he can at least document it. I know mine doesn't believe me even when he does see it. The last time he did my neuro exam 4 times - like I was faking it each time.

Both times I put my emergency care plan into effect for my daughter only to have it fall through. The last time I sat in a chair (she won't let me lie down, it makes her anxious) too weak to get up. She fed me her Halloween candy. I was more worried about her than me. I know you are concerned about your family too.

Please don't stay away - we care about you and want to see you get some serious support from your doctor, if he can't/won't, then we will.

My doctor is ok. He just hesitates to do too much incase it'll make things worse. I'm ok with that. I just get frustrated with feeling rotten all the time.

He believes me. He's supported me, it's just not having a dx that makes things tricky. He says 'fibro' but even he doesn't believe it. I can tell. He is mostly just monitoring me and says that unless anything "DIFFERENT" happens, it's likely nothing 'different' would show on MRI.

I'm inclined to agree. SOOOO where does that leave me? Basically in the same sinking boat as always! :D Because over the past 9 years...these are all the same symptoms coming and going!

All the meds he's given me to try thusfar have had a negative or no impact on me. He decided I should just ride it out as best I can. And for the most part...I'm ok with that. But he IS there if I feel I need something else.

Right now...I'm 'riding it out'.

Thanks for the comments. I hope you are doing ok cricket. It must be tough with a special needs child to look after. I don't know how you do it. I LOVE halloween candy!

Lorraine:)

[deanne]

Hi ,

Cricket hope your run of good days continues for many more.

Pooh watch out for the coffee table,its trying to get you,and good luck for the 8th.

Whisper I am like you having a bad week,my arms feel really heavy and weak and my fingers feel swollen(dont think they are ,but we are still getting hot weather)the strength and coordination is fine ,again like you its something thats happened at times during the past 11.5 years,and I will just "ride it out "also.Ill make a note and mention it to my neuro appt. in June.Hope its not too long for us both!

Hello and welcome to Gidge,RoseButtons,and Suse E Que(forgive me if I got the names wrong I am certainly no computer whizz)

[Barb]

Suze

As for the fullness of the head and the thumping - I can still hear - although it may be dimished some. It's just the nagging thumping in the head that gets me.

Because I suffer from severe migraines, I feel at times my neuro just attributes that feeling to the migraines starting even though I tell him it's not the start of migraines. Most times he listens well, then other times he overlooks things.

So when I go and see him next month again, I will mention it to him again because they are picking up again.

[Whisper]

Hi ,


Whisper I am like you having a bad week,my arms feel really heavy and weak and my fingers feel swollen(dont think they are ,but we are still getting hot weather)the strength and coordination is fine ,again like you its something thats happened at times during the past 11.5 years,and I will just "ride it out "also.Ill make a note and mention it to my neuro appt. in June.Hope its not too long for us both!

Hello and welcome to Gidge,RoseButtons,and Suse E Que(forgive me if I got the names wrong I am certainly no computer whizz)

Sorry you are still struggling after such a long, long time as well. It gets easier to avoid the doctor than to go to appointments.

Also wanted to mention a welcome to Gidge, Rosebuttons, and SuzeQ. I didn't mention it last week, but it's nice to know we aren't alone and have a place to come and 'compare notes'! :)

I wonder where Kris (babr) is. She never came back after the crash. I hope she is doing ok. Has anyone heard of/from her?

I'm feeling a bit better today...still really shaky and weak, but must press on because I have many things to do today...I hope I get a few of them done before I collapse.

Lorraine:)

[Suze E Que]

Here Ya'll are!! I thought I had lost it. but I guess I just lost you.

So a new thread each week huh?

[Barb]

yes Suze we start a new post each week that way it is easier to keep up with it all without having to go back and reread and refamilarieze ourselfs with what is going on. We all know how reading can be.

But don't worry if you get lost - someone will post the link to the new board for you. :-)

So what part of the hoosier state are you from? I grew up around FT wayne myself.


Lorraine - I don't think Kris came back after the crash. I know she was having a rough time before the crash. I wonder if she is just taking a break or spending more time with hubby. Wasn't he taking her on business trips there toward the end with him?

[Suze E Que]

I'm a bit slow ... got it now though.

barb I think I remember you from the old, OLD school days of brain talk as "Pooh"

[Barb]

Yeppers that is me - I got confused when they asked for user ID and I entered my Name ........ lol

Just one of those confuzzled days we all go through

[cricket52]

A while ago, a week or two I think I asked about fatigue and got some great answers and support from you guys.

Here's another one. I do volunteer work at the bingo hall. It involves being on my feet selling cards for 3-4 hours. Sometimes I might work two bingos (it's just nice to get out of the apt. and around adults). Sure I get stiff and sore, who doesn't? The players are used to watching me limp around. Lately though I have noticed that I get a burning pain in my leg, just a patch, and it hurts to have clothing touch it. It lasts about 48 hours after. It's not enough to make me quit, not by a long shot. I enjoy it too much.

Barb - you can relate to that one I suspect. PN? Old age?:D Or am I just being a cyberchondriac?

[Suze E Que]

"cyberchondriac" LOL :D

Cricket - I get "hot spots" on my right bum cheek and feels like hot water on my leg and foot (all on right side) but it comes and goes at random times and doesn't seem to have anything to do with standing. I just don't ever stand for very long any way.

Sometimes if I shop for too long the cheek seems to burn more though.

Too bad you can't get a stool to rest on for a minute here and there.

[Whisper]

Here's another one. I do volunteer work at the bingo hall. It involves being on my feet selling cards for 3-4 hours. Sometimes I might work two bingos (it's just nice to get out of the apt. and around adults). Sure I get stiff and sore, who doesn't? The players are used to watching me limp around. Lately though I have noticed that I get a burning pain in my leg, just a patch, and it hurts to have clothing touch it. It lasts about 48 hours after. It's not enough to make me quit, not by a long shot. I enjoy it too much.


Hi,
I don't work the bingos, but I do play them! It's the only 'fun' I get that doesn't require standing and walking or thinking too much!

I like that they bring me my coffee, or even lunch if I want, also my cards. I don't have to stand in long lines. This and the movies is about the only thing I do now.

I do gardening, but most of the time I just lay on the grass and hope the flowers will plant themselves! hee hee

I don't get the burning you mention, but I do get burning in the bottom of my right foot, and my fingers. I have no idea what brings it on, and I haven't found a pattern as yet.

My fingers were so bad that I couldn't stand it anymore so I got some ice in a bowl and put my fingers in there. All it ended up doing was making my fingers freeze on the outside, and burn on the inside. Infact they burned even more! So don't try that solution...it doesn't work.

I hope you get some relief soon.
Lorraine:)
PS, Thanks Barb, about Kris. I knew she was going with hubby lots, maybe she feeling better and doesn't need us anymore! (I really hope that's it!)

[Suze E Que]

Whisper - that sounds like my kind of gardening.

[Whisper]

Whisper - that sounds like my kind of gardening.

It would be funny if it weren't true!

I do try to do some gardening...I make my 23 year old dig the holes, make my husband mix up the compost and such, and get my 22 year old to bring me the plants...I get to stick the things in the ground!

I also get all the credit/blame!!!

But I love it.

Went out for a lovely dinner tonight with my darlin...it's our 24th wedding anniversary! My but time does fly, doesn't it?

Lorraine:)

[Barb]

Whisper

I can relate in more ways than you know. Along with PN - the burning pain and stuff is normally over a large portion of the leg - lets just say I can put an ice pack for the shoulder over the area to cool it down ........ lol But until recently, I haven't had the feeling where it hurt to wear clothing. Even at night it hurts to have a sheet touch the skin.

But also there are times - like with my shoulders or back - that I will get just spots of hot spots like you say. It's annoying that is for sure. PN - part of it yes I would venture to say. So What can be done to fix it? lol - like the docs can fix us ........ they don't know what all is wrong with us yet.

We are the Medical Mysteries !!!!!

Seriously - all you can do - is get something cool on the area for a while and calm down the nerves in that area. For some reason - sounds like they are hypersensative (as I would call it). Could be from a number of reason - medical to medication reaction.

Another thing to do while your selling those BINGO cards - is to wear lose fitting clothes see if this helps any.

[Suze E Que]

Whisper I think it's funny cause it IS true. Sounds like you have quite a crew working for you.

Maybe I could recruit some neighbor kids or something :D

[RoseButtons]

hi everyone!

sorry i havent stopped by but i neglected to pay my cable bill on time and they shut my internet off to get my attention.
of course they did so on a friday evening so i could not do anything about it until yesterday.

the big news at my house,,the only news really is that my daughter just may be pregnant. she is 2 weeks shy of 18. we are having a dr. appt on thursday. in the meantime she calls me 4 x a day because she is throwing up or scared sensless etc.

mind you this is a child that had allll the information and a mom that made THREE appt with a gyno for her only for her to blow those appt. off and chance it.

the lucky "baby daddy" (barring any miracles and we find out she is not preggo) is going on 20 and is a bit shell shocked. i do give him credit for sticking around so far and i been having some talks with him,,making sure he rememberd that a girl does not get into this situation by herself even if she is not being responsible the immaculate conception has been a while.

god help me we did not need this. i can barely make it financially as it is and strating next month when my daughter turns 18 i will no longer get any childsupport etc. which means i will somehow have to live of not quite 600 a month,,rent, utilities, car insurance, everything.
really do NOT know how to do it and i am trying so hard to find some venues of income,,with my website, ebay, anything but there is only so much you can do when fatique hits you square in the face and you barely remember your own name.

her father will disown her if not try to choke her,,,coincidently his new wife is 4 month pregnant.
i live in a mobile home, he is buildinga 500 thou new home. i am sure she will have to live with me or continue to live with her girlfriend although i do not think that would be the ideal situation for a baby,,her girlfirend has a 2 year old.

i have tried to think of something else but it is just not possible. it is making me have physical symtoms of course as in absolutely no sleep, leg spasms (they always seem to kick up in stressy times) and muscle pains all over.
all the while trying to calm down my child who freaks out about everything that seems to be happening to her body.

what can i do? i am saving the speeches cause she is FULLY aware she ****ed up and i dont believe in going on and on and on over "spilled milk" she will need all the family and love she can get and that is not going to be so easy to come by, i think we can write of her fater as a source.
the rest of the family i am not sure. they wont like the fact that the child would be biracial,,when in fact that should be the LEAST of anyones concern.

man oh man i am rambling,,,dont know how to pass the time till thursday afternoon,,that is when we have an appt. could not get in any sooner so we will have to tough it out although she is about to go batty.
she did the home test but that was 3 weeks ago, way early she would be about 2 month if she is.
i want to hear a doc tell me yes or no on that one.

so,,,if anyone has time,,channel some good energy my way so i can NOT think of this for lets say an hour, that would be good:cool: !

hugs
Chris aka RoseButtons

[Whisper]

hi everyone!

sorry i havent stopped by but i neglected to pay my cable bill on time and they shut my internet off to get my attention.
of course they did so on a friday evening so i could not do anything about it until yesterday.

the big news at my house,,the only news really is that my daughter just may be pregnant. she is 2 weeks shy of 18. we are having a dr. appt on thursday. in the meantime she calls me 4 x a day because she is throwing up or scared sensless etc.

mind you this is a child that had allll the information and a mom that made THREE appt with a gyno for her only for her to blow those appt. off and chance it.

the lucky "baby daddy" (barring any miracles and we find out she is not preggo) is going on 20 and is a bit shell shocked. i do give him credit for sticking around so far and i been having some talks with him,,making sure he rememberd that a girl does not get into this situation by herself even if she is not being responsible the immaculate conception has been a while.

god help me we did not need this. i can barely make it financially as it is and strating next month when my daughter turns 18 i will no longer get any childsupport etc. which means i will somehow have to live of not quite 600 a month,,rent, utilities, car insurance, everything.
really do NOT know how to do it and i am trying so hard to find some venues of income,,with my website, ebay, anything but there is only so much you can do when fatique hits you square in the face and you barely remember your own name.

her father will disown her if not try to choke her,,,coincidently his new wife is 4 month pregnant.
i live in a mobile home, he is buildinga 500 thou new home. i am sure she will have to live with me or continue to live with her girlfriend although i do not think that would be the ideal situation for a baby,,her girlfirend has a 2 year old.

i have tried to think of something else but it is just not possible. it is making me have physical symtoms of course as in absolutely no sleep, leg spasms (they always seem to kick up in stressy times) and muscle pains all over.
all the while trying to calm down my child who freaks out about everything that seems to be happening to her body.

what can i do? i am saving the speeches cause she is FULLY aware she ****ed up and i dont believe in going on and on and on over "spilled milk" she will need all the family and love she can get and that is not going to be so easy to come by, i think we can write of her fater as a source.
the rest of the family i am not sure. they wont like the fact that the child would be biracial,,when in fact that should be the LEAST of anyones concern.

man oh man i am rambling,,,dont know how to pass the time till thursday afternoon,,that is when we have an appt. could not get in any sooner so we will have to tough it out although she is about to go batty.
she did the home test but that was 3 weeks ago, way early she would be about 2 month if she is.
i want to hear a doc tell me yes or no on that one.

so,,,if anyone has time,,channel some good energy my way so i can NOT think of this for lets say an hour, that would be good:cool: !

hugs
Chris aka RoseButtons

Big Big Hugs going your way. And lots of goodwill! I hope all turns out well. Hang tough. I am glad to hear you are standing by your daughter.

I've heard of so many who turn their backs on their children! Everyone makes mistakes.

Perhaps if your daughter moves in with you (and possible baby) she can work, and you can look after the little one for a bit.

I wish you all the best.

Lorraine:)

[Whisper]

Whisper

I can relate in more ways than you know. Along with PN - the burning pain and stuff is normally over a large portion of the leg - lets just say I can put an ice pack for the shoulder over the area to cool it down ........ lol

When my feet burn, I've seen myself get out of bed to stand on the cold ceramic tiles to try to cool them down. Sometimes it works, but other times it makes them burn even more.

Or it's more noticeable. Yeah, Doctors can only fix what they 'know' is wrong... and not always that!

Lorraine:)

[cricket52]

Hi RoseButtons:

Tough situation to be in. My daughter was 15 when it happened to her. She made a go of it on her own and grew up fast.

He is now 15 and a really good kid.

Your health issues and finances make supporting her and the baby impossible. Can she get help from social assistance and live near you for the emotional support?

If this is your first grandchild you are in for a pleasant surprise. We all love our children more than life itself, grandchildren are a very special gift. I have 10 now. :)