Re: Re: De-lurking for a moment...

[Guest guest]

Thanks for all your info on this.

Jill

Re: Re: De-lurking for a moment...

Sorry about the blank email had a mouse problem....

Whoever it is with TMJ I highly recommend the surgery which isn't that bad.

I was down to peanut butter sandwiches and Ensure meal replacement for almost

a year my jaw was at its worst. I had mine done in 1995 and since I have had

the odd pain with weather but nothing bad.

I will tell you tho you first go thru 1 1/2 - 2yrs of braces, which I was

like a kid cause I always had the colored bands to fit each holiday. LOL

Most adults I was told try to hide their braces. When it came time to take

mine off I really missed them. Seems odd I know. They first align your

teeth prior to any surgery and once they have the teeth in the right

placement then you go for the surgery.

You go in the day before the surgery and home the day after the surgery. You

wake up or I did with a bandage wrapped around my chin and over my head for

the first 24hrs. This reduces after surgery swelling. Ice is a must and the

hospital gave me these ice holders which resemble the face masks in the OR

but doubled. You put the ice inside the middle and then with the ties. It is

tied around the side of your face. It works really well especially to lay

on. I had 2 extra bands inside my mouth holding my jaw secure. The next

morning I had to eat my cream of wheat with a plastic knife because at first

it is hard to open your mouth. You get the bandage removed and a steriod

shot which lasts for 2weeks and then you go home.

My TMJ surgeon did all of the work thru 2 small holes under my chin and

inside where the joints sit. I had 1/2 " removed from my bottom jaw bone,

realignment of the jaw, and he pulled out and turned out my chin. I have a

more promident chin. The second day after surgery I saw my orthodontist and

I had minimal bruising down my jaw to mid neck.. got lots of odd looks. The

biggest thing is keep icing the area and do not get up and move around too

fast or you will find your face will swell. I used a small plastic spoon for

about 3weeks until the exercises I had to do allowed me to open my mouth

farther. By week 6 I wanted pizza so bad and had niece and nephew here and I

threatened them with death if they told Grandma. Good thing Mum was out that

night so she didn't see anything. (for those who are newbies I have the

basement suite of parents house) LOL I ate and suffered silently because

pizza is chewy.

I continued the braces I think for 6months after the surgery and then moved

to the retainers. It has been 6yrs now and my teeth are still straight and

TM joint is still painless.

I hope this has helped some who are considering the surgery. Look for a good

maxiliofacial<sp> surgeon who does TMJ surgery not an oral surgeon;

Angel Hugs+Love

aka Spark

[Guest guest]

Thanks for all your info on this.

Jill

Re: Re: De-lurking for a moment...

Sorry about the blank email had a mouse problem....

Whoever it is with TMJ I highly recommend the surgery which isn't that bad.

I was down to peanut butter sandwiches and Ensure meal replacement for almost

a year my jaw was at its worst. I had mine done in 1995 and since I have had

the odd pain with weather but nothing bad.

I will tell you tho you first go thru 1 1/2 - 2yrs of braces, which I was

like a kid cause I always had the colored bands to fit each holiday. LOL

Most adults I was told try to hide their braces. When it came time to take

mine off I really missed them. Seems odd I know. They first align your

teeth prior to any surgery and once they have the teeth in the right

placement then you go for the surgery.

You go in the day before the surgery and home the day after the surgery. You

wake up or I did with a bandage wrapped around my chin and over my head for

the first 24hrs. This reduces after surgery swelling. Ice is a must and the

hospital gave me these ice holders which resemble the face masks in the OR

but doubled. You put the ice inside the middle and then with the ties. It is

tied around the side of your face. It works really well especially to lay

on. I had 2 extra bands inside my mouth holding my jaw secure. The next

morning I had to eat my cream of wheat with a plastic knife because at first

it is hard to open your mouth. You get the bandage removed and a steriod

shot which lasts for 2weeks and then you go home.

My TMJ surgeon did all of the work thru 2 small holes under my chin and

inside where the joints sit. I had 1/2 " removed from my bottom jaw bone,

realignment of the jaw, and he pulled out and turned out my chin. I have a

more promident chin. The second day after surgery I saw my orthodontist and

I had minimal bruising down my jaw to mid neck.. got lots of odd looks. The

biggest thing is keep icing the area and do not get up and move around too

fast or you will find your face will swell. I used a small plastic spoon for

about 3weeks until the exercises I had to do allowed me to open my mouth

farther. By week 6 I wanted pizza so bad and had niece and nephew here and I

threatened them with death if they told Grandma. Good thing Mum was out that

night so she didn't see anything. (for those who are newbies I have the

basement suite of parents house) LOL I ate and suffered silently because

pizza is chewy.

I continued the braces I think for 6months after the surgery and then moved

to the retainers. It has been 6yrs now and my teeth are still straight and

TM joint is still painless.

I hope this has helped some who are considering the surgery. Look for a good

maxiliofacial<sp> surgeon who does TMJ surgery not an oral surgeon;

Angel Hugs+Love

aka Spark

[Guest guest]

Thank you Irene for the nice letter :-)

I am so embarrassed, but what is FMS? Fibro something?

help?

Jill

Re: Re: De-lurking for a moment...

Jill,

There used to be quite a lot of mail going through here but some left to form

another group where they could discuss more personal things as well as

fibromyalgia. I don't know why they did as no one was objecting to that on

this list. So if you want to talk about any thing, please do. I might even

discuss my chili cooking.

My name is Irene and I am from San , Texas. I was told that I had FMS

about 6 years ago. I think that I have had it longer than that but it was

after a bad fall that it really become bad. I have my good and bad day.

This last week has not been good but I only hope for the good one. It will

come sooner or later. Talk to you later.

Take care,

Irene

[Guest guest]

Thank you Irene for the nice letter :-)

I am so embarrassed, but what is FMS? Fibro something?

help?

Jill

Re: Re: De-lurking for a moment...

Jill,

There used to be quite a lot of mail going through here but some left to form

another group where they could discuss more personal things as well as

fibromyalgia. I don't know why they did as no one was objecting to that on

this list. So if you want to talk about any thing, please do. I might even

discuss my chili cooking.

My name is Irene and I am from San , Texas. I was told that I had FMS

about 6 years ago. I think that I have had it longer than that but it was

after a bad fall that it really become bad. I have my good and bad day.

This last week has not been good but I only hope for the good one. It will

come sooner or later. Talk to you later.

Take care,

Irene

[Guest guest]

Well, besides all my other aches and pains, I am really interested in the " foot

thing " ......

I don't want to live on vicodin...I do child care, and want to have a life again

after work, instead of just being grateful to make it through the

day....drat......I do not want to sound like an ungrateful complainer......but I

sure feel like one alot these days.

Jill

Re: Re: De-lurking for a moment...

My feet do that. Not all of the time. But enough. The whole foot. I have

Vicodon that I take for pain. Nothing else helps and I have to take it quite

a bit lately.

Take care,

Irene

>

[Guest guest]

Well, besides all my other aches and pains, I am really interested in the " foot

thing " ......

I don't want to live on vicodin...I do child care, and want to have a life again

after work, instead of just being grateful to make it through the

day....drat......I do not want to sound like an ungrateful complainer......but I

sure feel like one alot these days.

Jill

Re: Re: De-lurking for a moment...

My feet do that. Not all of the time. But enough. The whole foot. I have

Vicodon that I take for pain. Nothing else helps and I have to take it quite

a bit lately.

Take care,

Irene

>

[Guest guest]

I am sorry. It is fibromyalgia. Shorthand. I should have told you.

Irene

> I am so embarrassed, but what is FMS? Fibro something?

> help?

>

[Guest guest]

LMJ.... No worry with the Melatonin and the kids needing you.. it helps you

get to sleep but you are not passed out cold. You can still hear if a kid is

beside you or calling for you. It is mostly a relaxer I find and if I feel

really tensed up I take a couple during the day and it seems to help loosen

me up.

If you do try the Melatonin try the lowest dose you can get away with and

still have it work. I would buy the 1mg pills and take 1 and see if it makes

you sleepy, if not add 1 more after about an hour. I have been using it a

long time that is why I take a higher dose. The nice thing is in the morning

you don't feel like you have a hang over like prescription sleeping pills are

known to do.

Angel Hugs+Love

aka Spark

[Guest guest]

LMJ.... No worry with the Melatonin and the kids needing you.. it helps you

get to sleep but you are not passed out cold. You can still hear if a kid is

beside you or calling for you. It is mostly a relaxer I find and if I feel

really tensed up I take a couple during the day and it seems to help loosen

me up.

If you do try the Melatonin try the lowest dose you can get away with and

still have it work. I would buy the 1mg pills and take 1 and see if it makes

you sleepy, if not add 1 more after about an hour. I have been using it a

long time that is why I take a higher dose. The nice thing is in the morning

you don't feel like you have a hang over like prescription sleeping pills are

known to do.

Angel Hugs+Love

aka Spark

[Guest guest]

FMS usually become a problem when we are stressed, have an accident, etc. You

had it for some time before but it did not become active until you had the

stress of the divorce would be my guess. I had a hard fall and could not get

out of bed the next 3 days because of the pain and that was the start of mine

although I was having symptoms long before that.

Irene

> Funny, the time we each started really having problems with our

>

[Guest guest]

Wow, it sounds like you've been through so much! It looks like it may

be a long road... Until now, I've been able to work full time, and

right now, I just can't do it. I'm wondering if I'll ever be able to

get back to my job... I'm sure you all can relate - this is very

depressing. It's good to have found someone who knows what this is

like. Sometimes I think even my Dad (who has CFS) thinks I just made

this all up because life was getting difficult. Serves me right I

guess. I'd had the same thoughts about him on occasion. And at times I

wondered if he had Alzheimers, and now I'm doing the same foggy-headed

things! Funny, the time we each started really having problems with our

DD is when we each were dealing with a divorce...

I've got a lot of tests set up this month, and need to get started on

an exercise program (but I'm so tired!) I'm at the beginning of trying

stuff - so I've started a multivitamin/mineral, Bcomplex, Coenzyme Q10

(expensive) and the Zoloft, of course. It's very hard for me to get

sleep, though. I have 3 kids ages 2-7, and rare is the night that one

of them isn't waking me up for anything from a bad dream to throwing

up. I was thinking about trying melatonin, but want to be able to be

there if one of the kids needs me. Does it knock you out?

LMJ

--- SparklH2O@... wrote:

> LMJ....

>

> You asked if anyone gets better? Well, there is no cure if that is

> what you

> mean, but there are ways you can make life a little better.

>

> In my case, I get Vit B1/B6/B12 combined into 1 shot weekly. Usually

> the

> shot routine is 1x/week for a month, then every 2weeks for a month,

> then

> monthly as a maintenance dose. We tried this and I couldn't do it.

> After

> 3weeks I was so stiff once again in the mornings. I went back to my

> Dr

> begging for the shot weekly once again. So, for me I will be on

> weekly shots

> forever which is fine by me because I know it helps. It has

> literally taken

> away my stiffness (worst spot is lower back and down to tailbone) by

> 90% and

> if a drastic weather change (like sudden rain or snow) it works up to

> 80%.

> We started the shots in my upper arm which hurt so bad I almost

> couldn't take

> it, but because it helped the stiffness I endured the pain. Now tho,

> we use

> my hip area. My Dr first pushes down on the spot she wants to use,

> if I feel

> pain she moves to another spot until I feel no pain. The trigger

> points for

> me are not exactly in the same place they should be, but with me my

> appendix

> wasn't either it was hiding behind my bowel. LOL So, once we find

> the

> right spot she gives me my shot and I don't feel a thing. Never get

> a shot

> in a trigger point area. Make sure you know where they are because

> by

> accident my 2nd hip shot went into the corner of a trigger point and

> the pain

> shot up my spine.

>

> I also use Flexeril (10mgs) 2-3x/day. At night I take 50mg

> Imipramine. I

> was on Elavil 50mgs in AM and 150mgs in PM (it wasn't really working

> anyway

> to aid in my sleep) and all it accomplished for me was to gain 40+

> pounds

> which really upset me. I made the switch 2 or 3weeks ago can't

> remember

> cause of the fibro fog, but I have lost 10lbs already. So, I know it

> is not

> what I have been eating. If I am having a big problem sleeping I

> will take

> 9-12mgs Melatonin, which a friend in the US sends me because it is

> banned for

> sale in Canada at least in Vancouver, BC, but you can bring 3months

> worth

> into the country. Crazy to me!

>

> If you can exercise it will help you a lot and I have read swimming

> is a very

> good way if you can find a pool. I cannot exercise due to other

> illnesses I

> have such as primary (born with) lymphedema. If I exercise my lower

> legs

> will get bigger due to the excess fluid settling in my lower legs due

> to

> gravity. In lymphedema the lymphatic system is either missing or

> malfunctioning. I do not have the ability to have my lymph system

> remove the

> toxins normally. I have to sweat them out but not in an exercise

> situation.

> I use herbs to aid in the sweating process or to help cleanse my

> system

> naturally. The only problem is that I was diagnosed at the age of

> 35yrs (am

> 39) and my lower legs are most likely stage 4 now, which means the

> tissue has

> hardened and non of the known treatments will help reduce their size.

> My Dr

> measured my lower legs on Wednesday when I went for my shot and they

> are 17

> 3/4 " on the right and 17 1/2 " on left. I drink a lot of water and

> got a

> water machine for my last birthday from my Mum because tap water made

> me sick

> due to all of the minerals, chemicals to clean the water and flouride

> in the

> water. On a hot day I add slices of lemon or lime, which helps

> reduce the

> water content in the tissues. Good thing I am close to the bathroom

> because

> the lemon sure makes you pee a lot. LOL Diuretics are one of the

> biggest no

> no's for anyone with lymphedema. They do not reduce the size of the

> limbs

> they rob your system of potassium in a big way. I totally go nuts on

> anyone

> who is told by their Drs to take diuretics. I am on the band wagon

> to drink

> plain water with lemon in the summer heat. It shows how little Drs

> know

> about lymphedema as well as fibro.

>

> I also have osteoporosis in my spine and is centered in the same

> place where

> the fibro is bad. I had some bad falls and broken ribs, and toes and

>

> fingers. We only found out late last year when I had an xray of my

> lumbar/SI

> joints (lower back and tailbone) area to make sure I hadn't broken

> anything

> back there because I was in so much pain that didn't go away. I was

> eating

> Tylenol 3 like they were candy without relief. The xray report came

> back

> saying " thinning bones, bones are flat, and NO change since 1996 " . I

> had NOT

> been told by any of my previous Drs nor been put on any treatment.

> This was

> a big shock to me and my new family Dr who I trust totally and is a

> 1/2 block

> from home. So, we discussed the available treatments and I agreed to

> use the

> Didrocal because a dear friend of ours said it worked well for her.

> I take

> Didrocal once at night for that but it takes a long time to kick in I

> was

> told. I have moved to the couch to sleep so it lessens the room for

> tossing

> and turning. I cannot sleep on my back at all and as soon as I go

> from my

> side to my back I wake up from saying " owe " in my sleep. Between the

> fibro

> and the osteo I sleep on an average of 3-4hrs and 4-6hrs when using

> the

> Melatonin.

>

> I also have panic attacks and take 15mgs Buspar 2x/day and 1mg

> Clonaxepam

> 2x/day. I have not had a bad attack in a year now. I was being

> misdiagnosed

> by ever Dr I had and was put on almost lethal amounts of depression

> drugs.

> One of my Drs had decided I was clinically depressed and sent me to a

>

> psychiatrist. I went and he said I was not clinically depressed

> because I

> knew what I had (panic) and I knew the solution(reduce the triggers)

> and use

> meds. At that time we did not have Buspar here (we still only have

> the 10mg

> doses) and he originally put me on .50mgs of Clonazepam. It didn't

> work and

> I had to demand my last Dr to increase it to 1mg to try and it is a

> blessing.

> My new Dr is fine with these doses and if I know I am going to be in

> a very

> stressful position she orders me sublingual Ativan to use. She is

> wonderful

> and I am sure GOD lead me to her. The other Dr I saw in the same

> office was

> a jerk, he never looked at me when I talked to him. He had this

> thing of

> putting the chart on the side of the sink and just made notes. He

> then sat

> on his rolling chair with his arms folded over his chest and told me

> point

> blank " I am not willing to give you anymore pain meds " . He made one

> more big

> mistake he went to Scotland for a month and I was given to the woman

> Dr. The

> receptionists knew that he was not treating me right and they would

> keep me

> abreast of when he was returning. I asked the woman Dr if she would

> take me

> as a patient the week before he came back. I told her what he was

> doing with

> me and she had read his notes. She at the time was not taking new

> patients,

> but she looked at me and said " because it is you yes I will be your

> Dr " . It

> was like a building was removed from my shoulders. She immediately

> changed

> my meds and gave me Percocet (newly available here) for my pain which

> works

> wonders. She also found he was giving me the wrong shot combo which

> is why

> my upper arms were black and purple from bruising. This was the

> summer and

> people looked at me like I was a battered woman. We unfortunately

> had to use

> up what was left and then she ordered the right combo and I had not

> had 1

> bruise or discoloration yet. His version didn't help the stiffness

> either.

>

> I guess what I am trying to tell you is keep trying things until you

> find the

> right combo of meds and exercise etc til you feel relief. You will

> have good

> days and bad, altho I have been in a bad flare since last April when

> I had

> kidney stones. I have 1 in each side right now waiting for them to

> move

> lower down in the kidneys, so my specialist can remove them via a

> scope thru

> the bladder and into the tubes leading from the kidney down to the

> bladder.

> He uses a little basket attached to the scope and he pushes the

> kidney up and

> down til the stone falls into the basket and thus removed.

>

> Well, guess I should step down from the soap box now and I am sorry

> once

> again things got long. One of my problems I let my brain go when I

> am

> writing and it just tumbles out. LOL

>

> Angel Hugs+Love

> aka Spark

>

__________________________________________________

[Guest guest]

Wow, it sounds like you've been through so much! It looks like it may

be a long road... Until now, I've been able to work full time, and

right now, I just can't do it. I'm wondering if I'll ever be able to

get back to my job... I'm sure you all can relate - this is very

depressing. It's good to have found someone who knows what this is

like. Sometimes I think even my Dad (who has CFS) thinks I just made

this all up because life was getting difficult. Serves me right I

guess. I'd had the same thoughts about him on occasion. And at times I

wondered if he had Alzheimers, and now I'm doing the same foggy-headed

things! Funny, the time we each started really having problems with our

DD is when we each were dealing with a divorce...

I've got a lot of tests set up this month, and need to get started on

an exercise program (but I'm so tired!) I'm at the beginning of trying

stuff - so I've started a multivitamin/mineral, Bcomplex, Coenzyme Q10

(expensive) and the Zoloft, of course. It's very hard for me to get

sleep, though. I have 3 kids ages 2-7, and rare is the night that one

of them isn't waking me up for anything from a bad dream to throwing

up. I was thinking about trying melatonin, but want to be able to be

there if one of the kids needs me. Does it knock you out?

LMJ

--- SparklH2O@... wrote:

> LMJ....

>

> You asked if anyone gets better? Well, there is no cure if that is

> what you

> mean, but there are ways you can make life a little better.

>

> In my case, I get Vit B1/B6/B12 combined into 1 shot weekly. Usually

> the

> shot routine is 1x/week for a month, then every 2weeks for a month,

> then

> monthly as a maintenance dose. We tried this and I couldn't do it.

> After

> 3weeks I was so stiff once again in the mornings. I went back to my

> Dr

> begging for the shot weekly once again. So, for me I will be on

> weekly shots

> forever which is fine by me because I know it helps. It has

> literally taken

> away my stiffness (worst spot is lower back and down to tailbone) by

> 90% and

> if a drastic weather change (like sudden rain or snow) it works up to

> 80%.

> We started the shots in my upper arm which hurt so bad I almost

> couldn't take

> it, but because it helped the stiffness I endured the pain. Now tho,

> we use

> my hip area. My Dr first pushes down on the spot she wants to use,

> if I feel

> pain she moves to another spot until I feel no pain. The trigger

> points for

> me are not exactly in the same place they should be, but with me my

> appendix

> wasn't either it was hiding behind my bowel. LOL So, once we find

> the

> right spot she gives me my shot and I don't feel a thing. Never get

> a shot

> in a trigger point area. Make sure you know where they are because

> by

> accident my 2nd hip shot went into the corner of a trigger point and

> the pain

> shot up my spine.

>

> I also use Flexeril (10mgs) 2-3x/day. At night I take 50mg

> Imipramine. I

> was on Elavil 50mgs in AM and 150mgs in PM (it wasn't really working

> anyway

> to aid in my sleep) and all it accomplished for me was to gain 40+

> pounds

> which really upset me. I made the switch 2 or 3weeks ago can't

> remember

> cause of the fibro fog, but I have lost 10lbs already. So, I know it

> is not

> what I have been eating. If I am having a big problem sleeping I

> will take

> 9-12mgs Melatonin, which a friend in the US sends me because it is

> banned for

> sale in Canada at least in Vancouver, BC, but you can bring 3months

> worth

> into the country. Crazy to me!

>

> If you can exercise it will help you a lot and I have read swimming

> is a very

> good way if you can find a pool. I cannot exercise due to other

> illnesses I

> have such as primary (born with) lymphedema. If I exercise my lower

> legs

> will get bigger due to the excess fluid settling in my lower legs due

> to

> gravity. In lymphedema the lymphatic system is either missing or

> malfunctioning. I do not have the ability to have my lymph system

> remove the

> toxins normally. I have to sweat them out but not in an exercise

> situation.

> I use herbs to aid in the sweating process or to help cleanse my

> system

> naturally. The only problem is that I was diagnosed at the age of

> 35yrs (am

> 39) and my lower legs are most likely stage 4 now, which means the

> tissue has

> hardened and non of the known treatments will help reduce their size.

> My Dr

> measured my lower legs on Wednesday when I went for my shot and they

> are 17

> 3/4 " on the right and 17 1/2 " on left. I drink a lot of water and

> got a

> water machine for my last birthday from my Mum because tap water made

> me sick

> due to all of the minerals, chemicals to clean the water and flouride

> in the

> water. On a hot day I add slices of lemon or lime, which helps

> reduce the

> water content in the tissues. Good thing I am close to the bathroom

> because

> the lemon sure makes you pee a lot. LOL Diuretics are one of the

> biggest no

> no's for anyone with lymphedema. They do not reduce the size of the

> limbs

> they rob your system of potassium in a big way. I totally go nuts on

> anyone

> who is told by their Drs to take diuretics. I am on the band wagon

> to drink

> plain water with lemon in the summer heat. It shows how little Drs

> know

> about lymphedema as well as fibro.

>

> I also have osteoporosis in my spine and is centered in the same

> place where

> the fibro is bad. I had some bad falls and broken ribs, and toes and

>

> fingers. We only found out late last year when I had an xray of my

> lumbar/SI

> joints (lower back and tailbone) area to make sure I hadn't broken

> anything

> back there because I was in so much pain that didn't go away. I was

> eating

> Tylenol 3 like they were candy without relief. The xray report came

> back

> saying " thinning bones, bones are flat, and NO change since 1996 " . I

> had NOT

> been told by any of my previous Drs nor been put on any treatment.

> This was

> a big shock to me and my new family Dr who I trust totally and is a

> 1/2 block

> from home. So, we discussed the available treatments and I agreed to

> use the

> Didrocal because a dear friend of ours said it worked well for her.

> I take

> Didrocal once at night for that but it takes a long time to kick in I

> was

> told. I have moved to the couch to sleep so it lessens the room for

> tossing

> and turning. I cannot sleep on my back at all and as soon as I go

> from my

> side to my back I wake up from saying " owe " in my sleep. Between the

> fibro

> and the osteo I sleep on an average of 3-4hrs and 4-6hrs when using

> the

> Melatonin.

>

> I also have panic attacks and take 15mgs Buspar 2x/day and 1mg

> Clonaxepam

> 2x/day. I have not had a bad attack in a year now. I was being

> misdiagnosed

> by ever Dr I had and was put on almost lethal amounts of depression

> drugs.

> One of my Drs had decided I was clinically depressed and sent me to a

>

> psychiatrist. I went and he said I was not clinically depressed

> because I

> knew what I had (panic) and I knew the solution(reduce the triggers)

> and use

> meds. At that time we did not have Buspar here (we still only have

> the 10mg

> doses) and he originally put me on .50mgs of Clonazepam. It didn't

> work and

> I had to demand my last Dr to increase it to 1mg to try and it is a

> blessing.

> My new Dr is fine with these doses and if I know I am going to be in

> a very

> stressful position she orders me sublingual Ativan to use. She is

> wonderful

> and I am sure GOD lead me to her. The other Dr I saw in the same

> office was

> a jerk, he never looked at me when I talked to him. He had this

> thing of

> putting the chart on the side of the sink and just made notes. He

> then sat

> on his rolling chair with his arms folded over his chest and told me

> point

> blank " I am not willing to give you anymore pain meds " . He made one

> more big

> mistake he went to Scotland for a month and I was given to the woman

> Dr. The

> receptionists knew that he was not treating me right and they would

> keep me

> abreast of when he was returning. I asked the woman Dr if she would

> take me

> as a patient the week before he came back. I told her what he was

> doing with

> me and she had read his notes. She at the time was not taking new

> patients,

> but she looked at me and said " because it is you yes I will be your

> Dr " . It

> was like a building was removed from my shoulders. She immediately

> changed

> my meds and gave me Percocet (newly available here) for my pain which

> works

> wonders. She also found he was giving me the wrong shot combo which

> is why

> my upper arms were black and purple from bruising. This was the

> summer and

> people looked at me like I was a battered woman. We unfortunately

> had to use

> up what was left and then she ordered the right combo and I had not

> had 1

> bruise or discoloration yet. His version didn't help the stiffness

> either.

>

> I guess what I am trying to tell you is keep trying things until you

> find the

> right combo of meds and exercise etc til you feel relief. You will

> have good

> days and bad, altho I have been in a bad flare since last April when

> I had

> kidney stones. I have 1 in each side right now waiting for them to

> move

> lower down in the kidneys, so my specialist can remove them via a

> scope thru

> the bladder and into the tubes leading from the kidney down to the

> bladder.

> He uses a little basket attached to the scope and he pushes the

> kidney up and

> down til the stone falls into the basket and thus removed.

>

> Well, guess I should step down from the soap box now and I am sorry

> once

> again things got long. One of my problems I let my brain go when I

> am

> writing and it just tumbles out. LOL

>

> Angel Hugs+Love

> aka Spark

>

__________________________________________________

[Guest guest]

Jillie...

As far as the Vit B1, B6, B12 (combined into one) shot it was my Dr who

brought it up. Just go to your Dr and demand the shot... as a patient

sometimes we have to do our own research and have an attitude to get the

right care. Drs are not what they used to be anymore and it is sad. Best

thing you can do is print stuff off the web which would be helpful. That is

what I have done.

If I were you I would ask your Dr to send you to a rheumatologist, who is

better apt to treat your fibro properly. Most family Drs(as we call them in

Canada) do not know enough about fibro to treat it fully and get you as

painfree as possible. My rheumy wants to change me from the Percocet to slow

release Morphine 2x/day to get me in a better painfree mode. I had the bone

density test on Tuesday and I go back to see my rheumy in 2weeks and we go

from there. I am lucky because I have one of the top rheumy's in Vancouver

and she is really nice. When she was testing my hip joints, you know where

they lay you down and turn your legs in and outward? I was almost screaming

from the pain. Not to mention the pain from being on my back, which my lower

back down to tailbone is my worst spots for fibro. She did it quick and got

me right up but it doesn't take much for my back to hurt bad. Good thing I

took some Percocet with me. She also touched the trigger points just inside

my knee and I was almost in tears, the 2nd leg she looked right at my face

and I was in tears. I guess this is why she wants to change my pain meds.

Out of all the trigger points only 1 doesn't hurt I believe. Not good!

I find the weather is bad for me too. We have a lot of rain during our

winters and it can put me on my side on the couch for days. This last week

has gone from rain to sun to rain and back to sun. Also having the

osteoporosis in the same lower lumbar/SI joints as the fibro does not help

either. I am taking Didrocal for that but it takes a long time to rebuild

your bone mass.

What is methotrexate ? It doesn't sound familiar to me.

Angel Hugs+Love

aka Spark

[Guest guest]

, Methotrexate is a potent drug from the chemotherapy family I believe. I

DO have a rheumy, as you call them :-) but he is a joke. In my opinion. He never

does anything, except sit there and advertise this drug, and how I could take it

but it IS really potent.....he thinks I have ankolosing spondylitis OR sporiatic

arthritis OR Inflammatory bowel disease (because at age 28 I had colitis) I am

53 now, no bowel symptoms. No tests for arthritis types have been positive....my

sed rate is a " little " elevated. I asked about fibro, and he said something

about well.....that is not really considered anything.....

So, I do not even want to go back there. He is an hour away......and going to a

different one would be 2 hours away.

Thanks for the reply......

I did write an e-mail to a support group in the area, and they wrote me back

about a meeting coming up and alot more stuff, so I think I will go to that.

Thanks again,

Jill

Re: Re: De-lurking for a moment...

Jillie...

As far as the Vit B1, B6, B12 (combined into one) shot it was my Dr who

brought it up. Just go to your Dr and demand the shot... as a patient

sometimes we have to do our own research and have an attitude to get the

right care. Drs are not what they used to be anymore and it is sad. Best

thing you can do is print stuff off the web which would be helpful. That is

what I have done.

If I were you I would ask your Dr to send you to a rheumatologist, who is

better apt to treat your fibro properly. Most family Drs(as we call them in

Canada) do not know enough about fibro to treat it fully and get you as

painfree as possible. My rheumy wants to change me from the Percocet to slow

release Morphine 2x/day to get me in a better painfree mode. I had the bone

density test on Tuesday and I go back to see my rheumy in 2weeks and we go

from there. I am lucky because I have one of the top rheumy's in Vancouver

and she is really nice. When she was testing my hip joints, you know where

they lay you down and turn your legs in and outward? I was almost screaming

from the pain. Not to mention the pain from being on my back, which my lower

back down to tailbone is my worst spots for fibro. She did it quick and got

me right up but it doesn't take much for my back to hurt bad. Good thing I

took some Percocet with me. She also touched the trigger points just inside

my knee and I was almost in tears, the 2nd leg she looked right at my face

and I was in tears. I guess this is why she wants to change my pain meds.

Out of all the trigger points only 1 doesn't hurt I believe. Not good!

I find the weather is bad for me too. We have a lot of rain during our

winters and it can put me on my side on the couch for days. This last week

has gone from rain to sun to rain and back to sun. Also having the

osteoporosis in the same lower lumbar/SI joints as the fibro does not help

either. I am taking Didrocal for that but it takes a long time to rebuild

your bone mass.

What is methotrexate ? It doesn't sound familiar to me.

Angel Hugs+Love

aka Spark

[Guest guest]

, Methotrexate is a potent drug from the chemotherapy family I believe. I

DO have a rheumy, as you call them :-) but he is a joke. In my opinion. He never

does anything, except sit there and advertise this drug, and how I could take it

but it IS really potent.....he thinks I have ankolosing spondylitis OR sporiatic

arthritis OR Inflammatory bowel disease (because at age 28 I had colitis) I am

53 now, no bowel symptoms. No tests for arthritis types have been positive....my

sed rate is a " little " elevated. I asked about fibro, and he said something

about well.....that is not really considered anything.....

So, I do not even want to go back there. He is an hour away......and going to a

different one would be 2 hours away.

Thanks for the reply......

I did write an e-mail to a support group in the area, and they wrote me back

about a meeting coming up and alot more stuff, so I think I will go to that.

Thanks again,

Jill

Re: Re: De-lurking for a moment...

Jillie...

As far as the Vit B1, B6, B12 (combined into one) shot it was my Dr who

brought it up. Just go to your Dr and demand the shot... as a patient

sometimes we have to do our own research and have an attitude to get the

right care. Drs are not what they used to be anymore and it is sad. Best

thing you can do is print stuff off the web which would be helpful. That is

what I have done.

If I were you I would ask your Dr to send you to a rheumatologist, who is

better apt to treat your fibro properly. Most family Drs(as we call them in

Canada) do not know enough about fibro to treat it fully and get you as

painfree as possible. My rheumy wants to change me from the Percocet to slow

release Morphine 2x/day to get me in a better painfree mode. I had the bone

density test on Tuesday and I go back to see my rheumy in 2weeks and we go

from there. I am lucky because I have one of the top rheumy's in Vancouver

and she is really nice. When she was testing my hip joints, you know where

they lay you down and turn your legs in and outward? I was almost screaming

from the pain. Not to mention the pain from being on my back, which my lower

back down to tailbone is my worst spots for fibro. She did it quick and got

me right up but it doesn't take much for my back to hurt bad. Good thing I

took some Percocet with me. She also touched the trigger points just inside

my knee and I was almost in tears, the 2nd leg she looked right at my face

and I was in tears. I guess this is why she wants to change my pain meds.

Out of all the trigger points only 1 doesn't hurt I believe. Not good!

I find the weather is bad for me too. We have a lot of rain during our

winters and it can put me on my side on the couch for days. This last week

has gone from rain to sun to rain and back to sun. Also having the

osteoporosis in the same lower lumbar/SI joints as the fibro does not help

either. I am taking Didrocal for that but it takes a long time to rebuild

your bone mass.

What is methotrexate ? It doesn't sound familiar to me.

Angel Hugs+Love

aka Spark

[Guest guest]

Thanks for the info on Melatonin !

LMJ in NY

--- SparklH2O@... wrote:

> LMJ.... No worry with the Melatonin and the kids needing you.. it

> helps you

> get to sleep but you are not passed out cold. You can still hear if

> a kid is

> beside you or calling for you. It is mostly a relaxer I find and if

> I feel

> really tensed up I take a couple during the day and it seems to help

> loosen

> me up.

>

> If you do try the Melatonin try the lowest dose you can get away with

> and

> still have it work. I would buy the 1mg pills and take 1 and see if

> it makes

> you sleepy, if not add 1 more after about an hour. I have been using

> it a

> long time that is why I take a higher dose. The nice thing is in the

> morning

> you don't feel like you have a hang over like prescription sleeping

> pills are

> known to do.

>

> Angel Hugs+Love

> aka Spark

>

__________________________________________________

[Guest guest]

Yes, I've had it for a long time. Thinking back the first symptom I

can remember is 9yrs ago. I went to walk out at the end of a college

class and couldn't walk due to excruciating hip pain. I was able to

walk after about 5 minutes of holding up the wall nonchalantly... I've

been told that I'm getting old and don't like it, that I need to deal

with it, that I have no reason to be out of work (this one when I was 7

1/2 months pregnant and having extreme pain and fatigue... I finally

said, " I'm not going back to work, I can't do it. You can sign this or

not, but I can't keep working. " I guess they figured if I was willing

to go without my paycheck, maybe I was really in distress after all,

cause they signed it.)

Anyway, I'm getting off the point. I was definitely at one of the

worst stress points of my life when this hit the worst.

LMJ in NY

--- patidu@... wrote:

> FMS usually become a problem when we are stressed, have an accident,

> etc. You

> had it for some time before but it did not become active until you

> had the

> stress of the divorce would be my guess. I had a hard fall and could

> not get

> out of bed the next 3 days because of the pain and that was the start

> of mine

> although I was having symptoms long before that.

>

> Irene

>

>

> > Funny, the time we each started really having problems with our

> >

>

>

>

>

>

[Guest guest]

LMJ, Isn't this odd.....my whole list of symptoms also started in the " hip " ....I

was a file clerk at the time, way back in 1968 or so....and I struggled terribly

with the pain. It eventually moved from one hip to my wrists, jaw, even my nose

carteledge, if ya can believe that:-)

Is there any evidence this dd was present that far back? Certainly I never heard

the term till may years later......

Jill

Re: Re: De-lurking for a moment...

Yes, I've had it for a long time. Thinking back the first symptom I

can remember is 9yrs ago. I went to walk out at the end of a college

class and couldn't walk due to excruciating hip pain. I was able to

walk after about 5 minutes of holding up the wall nonchalantly... I've

been told that I'm getting old and don't like it, that I need to deal

with it, that I have no reason to be out of work (this one when I was 7

1/2 months pregnant and having extreme pain and fatigue... I finally

said, " I'm not going back to work, I can't do it. You can sign this or

not, but I can't keep working. " I guess they figured if I was willing

to go without my paycheck, maybe I was really in distress after all,

cause they signed it.)

Anyway, I'm getting off the point. I was definitely at one of the

worst stress points of my life when this hit the worst.

LMJ in NY

--- patidu@... wrote:

> FMS usually become a problem when we are stressed, have an accident,

> etc. You

> had it for some time before but it did not become active until you

> had the

> stress of the divorce would be my guess. I had a hard fall and could

> not get

> out of bed the next 3 days because of the pain and that was the start

> of mine

> although I was having symptoms long before that.

>

> Irene

>

>

> > Funny, the time we each started really having problems with our

> >

>

>

>

>

>

[Guest guest]

LMJ, Isn't this odd.....my whole list of symptoms also started in the " hip " ....I

was a file clerk at the time, way back in 1968 or so....and I struggled terribly

with the pain. It eventually moved from one hip to my wrists, jaw, even my nose

carteledge, if ya can believe that:-)

Is there any evidence this dd was present that far back? Certainly I never heard

the term till may years later......

Jill

Re: Re: De-lurking for a moment...

Yes, I've had it for a long time. Thinking back the first symptom I

can remember is 9yrs ago. I went to walk out at the end of a college

class and couldn't walk due to excruciating hip pain. I was able to

walk after about 5 minutes of holding up the wall nonchalantly... I've

been told that I'm getting old and don't like it, that I need to deal

with it, that I have no reason to be out of work (this one when I was 7

1/2 months pregnant and having extreme pain and fatigue... I finally

said, " I'm not going back to work, I can't do it. You can sign this or

not, but I can't keep working. " I guess they figured if I was willing

to go without my paycheck, maybe I was really in distress after all,

cause they signed it.)

Anyway, I'm getting off the point. I was definitely at one of the

worst stress points of my life when this hit the worst.

LMJ in NY

--- patidu@... wrote:

> FMS usually become a problem when we are stressed, have an accident,

> etc. You

> had it for some time before but it did not become active until you

> had the

> stress of the divorce would be my guess. I had a hard fall and could

> not get

> out of bed the next 3 days because of the pain and that was the start

> of mine

> although I was having symptoms long before that.

>

> Irene

>

>

> > Funny, the time we each started really having problems with our

> >

>

>

>

>

>

[Guest guest]

Jill,

I found this site on the history if Fibromyalgia:

http://www.lclark.edu/~sherrons/history.htm

It seems that it's been around a long time. I don't know if hip pain

is common as a first symptom though. Does anyone else?

LMJ in NY

--- Jillie wrote:

> LMJ, Isn't this odd.....my whole list of symptoms also started in the

> " hip " ....I was a file clerk at the time, way back in 1968 or

> so....and I struggled terribly with the pain. It eventually moved

> from one hip to my wrists, jaw, even my nose carteledge, if ya can

> believe that:-)

> Is there any evidence this dd was present that far back? Certainly I

> never heard the term till may years later......

> Jill

> Re: Re: De-lurking for a moment...

>

>

> Yes, I've had it for a long time. Thinking back the first symptom

> I

> can remember is 9yrs ago. I went to walk out at the end of a

> college

> class and couldn't walk due to excruciating hip pain. I was able

> to

> walk after about 5 minutes of holding up the wall nonchalantly...

> I've

> been told that I'm getting old and don't like it, that I need to

> deal

> with it, that I have no reason to be out of work (this one when I

> was 7

> 1/2 months pregnant and having extreme pain and fatigue... I

> finally

> said, " I'm not going back to work, I can't do it. You can sign

> this or

> not, but I can't keep working. " I guess they figured if I was

> willing

> to go without my paycheck, maybe I was really in distress after

> all,

> cause they signed it.)

> Anyway, I'm getting off the point. I was definitely at one of the

> worst stress points of my life when this hit the worst.

> LMJ in NY

>

> --- patidu@... wrote:

> > FMS usually become a problem when we are stressed, have an

> accident,

> > etc. You

> > had it for some time before but it did not become active until

> you

> > had the

> > stress of the divorce would be my guess. I had a hard fall and

> could

> > not get

> > out of bed the next 3 days because of the pain and that was the

> start

> > of mine

> > although I was having symptoms long before that.

> >

> > Irene

> >

> >

> > > Funny, the time we each started really having problems with our

> > >

> >

> >

> >

> >

> >

[Guest guest]

This was interesting. Thanks for sending.

Jill

Re: Re: De-lurking for a moment...

>

>

> Yes, I've had it for a long time. Thinking back the first symptom

> I

> can remember is 9yrs ago. I went to walk out at the end of a

> college

> class and couldn't walk due to excruciating hip pain. I was able

> to

> walk after about 5 minutes of holding up the wall nonchalantly...

> I've

> been told that I'm getting old and don't like it, that I need to

> deal

> with it, that I have no reason to be out of work (this one when I

> was 7

> 1/2 months pregnant and having extreme pain and fatigue... I

> finally

> said, " I'm not going back to work, I can't do it. You can sign

> this or

> not, but I can't keep working. " I guess they figured if I was

> willing

> to go without my paycheck, maybe I was really in distress after

> all,

> cause they signed it.)

> Anyway, I'm getting off the point. I was definitely at one of the

> worst stress points of my life when this hit the worst.

> LMJ in NY

>

> --- patidu@... wrote:

> > FMS usually become a problem when we are stressed, have an

> accident,

> > etc. You

> > had it for some time before but it did not become active until

> you

> > had the

> > stress of the divorce would be my guess. I had a hard fall and

> could

> > not get

> > out of bed the next 3 days because of the pain and that was the

> start

> > of mine

> > although I was having symptoms long before that.

> >

> > Irene

> >

> >

> > > Funny, the time we each started really having problems with our

> > >

> >

> >

> >

> >

> >

[Guest guest]

It did with me. I, however, attributed to the fall that I had.

Take care,

Irene

>

> It seems that it's been around a long time. I don't know if hip pain

> is common as a first symptom though. Does anyone else?

>

[Guest guest]

Hi! Hip pain is what took me to my doctor, but it was in my shoulder that

I first felt pain. Then, it traveled into my upper arm muscles, and then I

noticed my hands ached. Then, when my hips started, and then the knees, I

figured I had arthritis, but to my surprise it turned out to be fibro (after

two years of tests). I am now on Evavil, and it's making me a very sleepy

gal, but the pain is nearly gone (for now!).

Sharon

It seems that it's been around a long time. I don't know if hip pain

is common as a first symptom though. Does anyone else?

LMJ in NY

[Guest guest]

You know, when I first complained of the hip pain, my doctor seemed

puzzled that it was just the hip - he seemed to expect me to complain

of pain in smaller joints as well, (arthritis) which I didn't have at

the time... and the shoulders followed not too long after that. Just

thinking online... I wonder if it commonly starts with the larger

joints, the opposite of arthritis (from what I understand). LMJ in NY

--- " Sharon K. Gilbert " wrote:

> Hi! Hip pain is what took me to my doctor, but it was in my

> shoulder that

> I first felt pain. Then, it traveled into my upper arm muscles, and

> then I

> noticed my hands ached. Then, when my hips started, and then the

> knees, I

> figured I had arthritis, but to my surprise it turned out to be fibro

> (after

> two years of tests). I am now on Evavil, and it's making me a very

> sleepy

> gal, but the pain is nearly gone (for now!).

> Sharon

>

> It seems that it's been around a long time. I don't know if hip pain

> is common as a first symptom though. Does anyone else?

>

> LMJ in NY

>

>

>

>

>

[Guest guest]

I first noticed stiffness in my neck, then hips, then shoulders, then

wrists. I read magazines backwards, too.

Cyndy

--- lmjcrowell wrote:

> You know, when I first complained of the hip pain, my doctor seemed

> puzzled that it was just the hip - he seemed to expect me to

> complain

> of pain in smaller joints as well, (arthritis) which I didn't have

> at

> the time... and the shoulders followed not too long after that.

> Just

> thinking online... I wonder if it commonly starts with the larger

> joints, the opposite of arthritis (from what I understand). LMJ in

> NY

>

> --- " Sharon K. Gilbert " wrote:

> > Hi! Hip pain is what took me to my doctor, but it was in my

> > shoulder that

> > I first felt pain. Then, it traveled into my upper arm muscles,

> and

> > then I

> > noticed my hands ached. Then, when my hips started, and then the

> > knees, I

> > figured I had arthritis, but to my surprise it turned out to be

> fibro

> > (after

> > two years of tests). I am now on Evavil, and it's making me a

> very

> > sleepy

> > gal, but the pain is nearly gone (for now!).

> > Sharon

> >

> > It seems that it's been around a long time. I don't know if hip

> pain

> > is common as a first symptom though. Does anyone else?

> >

> > LMJ in NY

> >

> >

> >

> >

> >