New member

[Guest guest]

Welcome ! I'm Debi, 32, dxed last Christmas, married and

mother to 3 little girls, 6, 4, 9mos. This is a great group!

Debi

> Hi my name is . I am 20 years old. I was just resently

> diagnosed with type 2 diabetes. You may have heard my story by

Renay

> (nayray2001). i am looking forward to talking to ya'll and

learning

> as much as i can. HUGS

>

[Guest guest]

Welcome Jenelle. I love your e-mail address

Kimba

[Guest guest]

Sandy,

Welcome to the group, sorry that Shane's condition brought you here,

but this is a great site to get information and support to help you

and Shane along on the PSC rollercoaster.

Denver is one of the top centers for living donor liver transplants

(LDLT), so if that is the direction that Shane's treatment takes he

is in a good place. There are pros and cons to LDLT so be sure to

discuss at lenght with the doctors all aspects of Shane's care.

Even though Shane has not yet been listed have you been told what

his MELD score is? Or do you have his lab results for bilirubin,

creatinine and INR? These give a risk assesment and can be used to

estimate how long he would have to wait for a cadaver donor liver.

Tim R ltx 4/4/98 recurrent PSC 2002

[Guest guest]

Sandy,

I'm glad you found the group, but sorry you have the need to even look for us. I know this must all be very frightening for you. Denver is one of the best places in the US to have transplants done so he is in good hands there. You will find that we have people in this group in various stages of this disease and with varying symptoms. Many are post transplant and have much wisdom and advice to share. Take care, let us know what is going on. Cheryl Berg, Idaho 45Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher)

New Member

My son who will be 27 in June was diognoist with psc in 1998 when this group was just starting. He was 21 at that time. He will be getting out of the hospital tomorrow and will make an appointment for the clinic to start down the road for a transplant. He is on a lot of pain medication. He is in Denver. He is scared as we all are. It is scary. I think that this will happen soon. Sandy

[Guest guest]

ok sorry if this sounds stupid of me.. was this a joke? all i had was gaint wording all over the place and couldnt get most of it.. just the ending of it.

blessings and mp

wen

[Guest guest]

No, apparently when they replied they probably just had their font

size to large.... here is their message:

" i am sorry i haven't sent my personals before. it is hard to

function right now.

>

> i am 55, one son {35}, three step sons {47,45,33}, 14

grandchildren {i inherited 11 from his sons and my son has 3}, and

twin girl great-grands.

>

> my husband of 11 years passed june 30 of this year.

>

> i have two doggies: snigglefritz and droopy drawers {baby}.

>

> .

> i live in knoxville, tn. foothills of the great smokey mountains.

>

> as you all know it is so frustrating to deal with drs. and

medicare. the pain medicare puts us through, just to get the correct

treatment " , is unreal.

>

> i can hardly walk on my right leg because of knee pain. they put a

brace on me. helps some. they are giving me a shot each friday

afternoon, lordy, lordy, lordy, it hurts. i can't wear the brace

because the shot makes my knee so sore for the first three days i

can't stand it. duh!!!!!!!!!!!!!

>

> i enjoy reading the e-mails you gals send each other. they are so

full of compassion, caring and encouragement.

>

> anyway, i hope to be an encourager and compassionate listener in

your group.

>

>

> dove!

>

> ...GOD WILL CONQUER ALL...IF WE ALLOW HIM TO... " "

Hope that helps,

N.

>

>

>

> ok sorry if this sounds stupid of me.. was this a joke? all i had

was gaint

> wording all over the place and couldnt get most of it.. just the

ending of

> it.

> blessings and mp

> wen

>

[Guest guest]

I second that. Welcome to our family! What Norene won't say is that

I am crazy, but they are generous enough to treat me like I'm

normal...

LOL.

Jayne

>

> Hi is,

> Welcome.. So nice to have you join our group. I have found

great support, wisdom, and humor..... I love this group,

they understand me and don't think I'm crazy.

>

> Take care, Norene

>

>

>

> ---------------------------------

> Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

>

[Guest guest]

Hi Cyn:

Thank you for your warm welcome. It was such a blessing to hear from you. Thank you for all the wonderful advice you have given to me. It's really nice to hear from someone that understands.

May I ask what the doc took x-rays for? My doctor has only been doing blood tests up to this point. He put me on Cymbalta, which has made me so tired all I have done is sleep or lay on the couch with no energy to do anything.

Hugs,

Re: New Member

Hi ,Welcome to the group! I haven't been posting much, between 'puter problems & being sick, but am hopefully getting better.You may want to ask your doc if he'll recommend a pain clinic. I went for my second visit today, armed with some printouts of articles I thought the doc should see, including the one about morphine & Neurontin taken together provide greater pain relief than either taken separately. He had taken me off of morphine a few weeks ago, but on the basis of that article, he put me back on, albeit a lower dose. Instead of MS-Contin, I'm now on something called Kadian. It's a once-a-day pill, & he said the dosage I'm on (20 mg/day) should work nicely with the Neurontin (generic name is Gabapentin), of which I'm taking 4200 mg/day. He said I'm on a fairly low dose of Neurontin, but with the Kadian, it should work well. Morphine actually increases the blood plasma level by 40%, instead of letting it be excreted. The problem with high doses of Neurontin is that if you take too much, your body doesn't use it and it's excreted unused.I had to get x-rays before the visit, & they (the hospital) put the films on a CD. After the visit the doc gave me the cd to bring home! I told him I was going to use the pics as screen backdrops. He thinks I'm crazy, lol! Our visit today went much better than the first one, and I feel much better about seeing him.Pain clinics will often have you sign a contract...you can only get your pain meds from them, & even use only one drugstore to get them filled. But, each one is different, so if you decide to go to one, you may not get the same set of rules. But do give it a thought. It's worth a try, and if you've had problems with meds, this is their specialty.Good luck!cynAt 02:43 PM 12/12/2005, wrote:>I can't wait to get to know all yall better. Thank yall for letting>me be part of this group.clmerritt@...FSG co-moderator

[Guest guest]

Thank you for the long email Cyn, but I loved every bit of it. It sounds like your children have been through their hard times, but have come out on top. Sometimes we as mothers blame ourselves for the things that happen, but we have no control over it.

I was married for many years to a very abusive alcoholic and I have one son right now who was just arrested for OWI (Operating While Intoxicated) and has a drinking problem. My other son hasn't talked to me in about 10 years. He is 27.

My parents were very abusive to each other and my motherwas very abusive to me both physically and mentally and to this day will not speak to me unless she has no other choice. She really acts as though she doesn't want me. My brother, who is a junkie and an alcoholic, has lied and stolen from them, but she is his favorite. He can't do any wrong.

Anyways they say fibro is caused by many things. My doctor hasn't diagnosed me with it yet, but he is slowly ruling everything out, so I'm sure eventually he will have to tell me it's fibro. I have RLS, PLMD, TMJ, IBS and many of the symptoms of fibro. I wonder sometimes if all the abuse in my life has finally come back to haunt me.

I can relate to you in so many ways.

Hugs,

Re: New Member

Hi ,Welcome to the list! I know how terrible you must be feeling. I REALLY hate cold weather. I grew up in PA, & moved south to get away from the cold, but I've found Nashville is just as cold in the winter as PA! And it's difficult when the people around you just don't have a clue as to just how painful this condition is. My husband tries to be understanding...sometimes he can look at me and tell I'm really hurting, and he'll make me go to bed or take a hot bath in Epsom salts. I could be in the middle of writing an email or getting something to eat, and he'll make me go to bed, with a heating pad. He also encourages me to take my Fiorinal #3, which I hoard for the really bad pain. I'm on morphine, but it doesn't seem like it's doing anything at all. I suppose I'd be feeling a lot worse without it, tho, lol!This is going to sound insane: I've got a 10' python named Mickey, and he KNOWS where I hurt. I don't know if the painful areas are warmer to the touch, or what, but he will wrap around me (gently) and ripple his muscles, giving the greatest massages. It sounds unreal, but it's true! He was only 6' long when we got him, and I was terrified of him, because he bit everyone in the pet shop. Several people bought him, then returned him because he was unmanageable. I bought him as an early birthday present for my husband 11 years ago, and he turned into a BEAST! He bit several times, & wanted to take him, terrarium & all, & just put him on the doorstep of the reptile shop overnight, which would have killed Mickey. I covered the cage with a blanket for a few days (I wasn't about to kill a $250 snake!), & he did a complete turnaround. But I refused to go near him. Then one night I was lying on the bed, in terrible pain, and felt something on my back. It felt like a huge massage. I felt a tongue flick my face, & saw it was Mickey! After that I lost all fear of him. He is so gentle with me, has never bitten me in 11 years, and if I need a good back massage, I take him out and let him go to work. (He also wraps around my legs & ripples) Snakes are tireless, and he'll keep it up until I'm feeling better.My oldest son is showing signs of fibro, but he keeps "blowing me off" when I try to get him to do something about it. His doc just put him on Cymbalta, so maybe that will help. He's got a whirlpool bathtub (I get to house-sit for him the week after Christmas, yippee!!!.....oh, and I have to take care of the dog, too, lol! He's a huge boxer named Tigger, & he thinks I'm his mommy). But he gave me a whirlpool attachment for my tub, and a TENS unit, and has a friend who gives really great massages, and sets me up with him once in a while.My youngest son recently told me he has fibro, and his insurance at work won't cover the PT he needs. Also, he broke his ankle while riding motocross. The break was pretty bad, he was out of work for 6 weeks, and now his foot is turning inwards & he needs a special insert for his shoe so his foot will turn back to its normal position. He's on Lortab, which he doesn't really like, & can't take while he works (he works for a Chevy dealership, doing body work).He was an ADD child, and really got out of hand once he hit 2. His father thought it was cute for him to smoke marijuana when he was 2...he'd have Jerry pass the joint between his friends & encourage him to take a "toke". Bob also gave him beer. This happened when I wasn't around (usually upstairs nursing my daughter, who was a preemie & needed a lot of attention). By the time he was 8 he was sneaking joints on a regular basis, drinking, and then got into Bob's cocaine stash. (I didn't find out about all this until a couple of years ago) He was selling it to friends (one time he got angry at his father and took a gram of coke & sold it to a neighbor for $30). Then when he was 17 (by that time I had divorced Bob, & Jerry was living with him because I couldn't find a large enough apartment...I still didn't know about the drugs & alcohol, he hid it very well) he started smoking crack. His father got him started on it.He'd dropped out of school a couple of years before...in fact, no school in the area would take him because he was so out of control. I'd had him locked up in juvie a few times, hoping to scare him into better behavior, but it didn't work. I even got to the point where I was going to give him up to a foster home. Then on the day of the court appearance I took one look at him and just started sobbing. I couldn't sign the papers and give my child away, as horrible as living with him could be. He got mixed up with Bob's friends who were stealing cars & stripping them, selling them for drugs. With all the drugs & stuff, he never got caught by the police. He was stopped for a few non-moving violations, like tail-light out, etc. He'd lost his license (for unpaid parking fines, & they impounded his car) but he gave his brother's license #, which he'd memorized. didn't find out until his insurance rates went up, and he filed charges. Jerry got probation, but he got stopped again & used 's license #. This time he went to prison for a year. He said the place was full of drugs, and there was a lot of temptation, but he wanted to go clean. He was actually baptized in prison, and kept clean. My daughter had a small son who adored his uncle Jerry, and that's the inspiration Jerry used when he was tempted to try crack again. & I went to see him in prison, but his father never tried, not once in that year.When he got out, he got a place of his own, has been clean for 8 years, and has stopped drinking as well. (tho he does have a few cups of beer when he's at a party). He saved up enough money to pay his fines, get back his license and car. He also paid his lawyer's $7000 fee with no help from anyone else. He worked 2 jobs at once, plus moonlighted in his free time to do all this. I'm really proud of him for the way he turned his life around. He'd robbed his father blind, but NEVER stole from me or his sister. He hates his father, who was an abusive alcoholic drug user who beat him, kicking him in the stomach when he was down on the floor (this was while I was at work, & Jerry never told me). But now his body is feeling the effects of the abuse, which he really regrets. He's got a heart of gold...when my daughter was in danger of losing her home, he took out an $8000 loan for her, when I was sick last summer he came over with food & gave me money for meds. When I tried to pay him back, he said "I won't take it. You're my mother and took care of me all my life, now it's my turn to take care of you!" That made me cry.I guess anyone reading this is wondering why I'm writing all this, but I feel like I have to write it. I feel so proud of all my children, all of whom have fibro. Yes, even my daughter has it. She took Ultram for a year for her pain, but had to stop when she became pregnant again. She's in a lot of pain as well, especially her back. She won't take pain pills (other than over the counter) because she works, & does a lot of driving with the children in the car & doesn't want to endanger them. Her husband is good about lots of massage, and she has a lot of will-power. She's a very upbeat woman (It's hard to call your children men and women....how did we get so old so fast?? I'm 53, but don't feel like I am!) and all her life I told her she was pretty and smart and could do anything she wanted when she grew up. She dropped out of school (the middle school she attended was one of the first in the nation to have problems with guns & weapons....one day they had a surprise search & came up with 158 weapons, including knives, handguns, rifles & shotguns. They actually nicknamed the school "the National Gun School". She quit, with my blessing, after the search. She got her GED, works for a home improvement company in a high position, and is an excellent mother (she treats her step-daughter as her own. In fact, Noel, the step, calls me Grandma!) and her husband adores her. But some days her pain is so bad, she calls me crying.I really regret that I've passed this awful condition on to all of my children. Their ages are 33,31, & 29 ( is the youngest). I'm praying my grandsons don't end up developing this syndrome as well. But, that's out of my control, and perhaps, if they do, by the time they do there'll be a cure or treatment. All of my kids have great attitudes, which they tell me they learned from me. I don't remember being an especially happy person, tho I tried to hide my problems from them. But I always encouraged them in whatever they were interested in, and never ever put them down for their interests.Well, I really went off topic here....tho all my kids have fibro, and snakes really do give good massages, lol! Take care, and don't give up. My back is burning right now, and I'm thinking of taking Mickey out. It's so tempting. Yeah, I'm gonna do it, right now!Take care, and know that we care about you. And don't feel you have to limit what you write. Type away, and let us know your thoughts and feeling. It helps a lot to "purge".Hugs,cynPS, I've got Mickey & he feels wonderful!At 02:08 PM 12/13/2005, wrote:>Hello,>I'm new here and have been for a few days.....clmerritt@...FSG co-moderator

[Guest guest]

Hi Cyn:

The doctor has me on Carbidopa/Levidopa for the RLS which helps so much and he has me on Clonazapam to help me sleep better. He put me on Cymbalta a couple weeks ago, but it seems to only make me sleep and I have no energy to do anything. All I do is lay on the couch or sleep, so maybe this isn't the best medicine for me. I have another appointment with him next week, so we will see.

Hugs,

Re: New Member

Hi !You're very welcome! I have been to so many different doctors lately, and they've all pretty much washed their hands of me! They all said to go to a pain clinic, so I did it. I wasn't happy with it at first, but now things seem to be going well.The x-rays were of my lumbar spine, hips & knees, because that's where most of my pain is. My rheumy took x-rays of my hands, because he suspected osteoarthritis. It turned out that most of my fingers are showing signs of being in the early stages of OA. The pain doc just wanted to make sure I didn't have any lesions or problems with the bones (at the joints especially). My x-rays showed that my spine, knees & hips are all free of problems. The doc said the ball & socket joints in my hips look like those of someone much younger (I'm 53), as did my knees & spine. He said there's no compression, good spaces between the vertebrae, & no spurs or wear & tear on the cartilage. My rheumy wanted to put me on Cymbalta, but my pdoc is leery of trying anything new, because of the NMS. I've had a couple of recurrences, and now none of my docs will try me on anything new unless the pdoc approves it first.There is an anti-Parkinsons drug that they've found can help people with fibro. It reduces pain & feelings of inflammation. I begged my rheumy to try me on it, but he refused because of the NMS. It's called Mirapex. Here's a link to the study -http://www.webmd.com/content/article/109/109243?action=related_link. I also copied the article & posted it to the list. I begged and begged, and even offered to sign a release form, but he said I'd have to get the ok from my pdoc, who I won't be seeing until the end of the month. But this sounds so hopeful!Hugs,cynAt 11:49 AM 12/13/2005, Hunt wrote:

Hi Cyn: Thank you for your warm welcome. It was such a blessing to hear from you. Thank you for all the wonderful advice you have given to me. It's really nice to hear from someone that understands. May I ask what the doc took x-rays for? My doctor has only been doing blood tests up to this point. He put me on Cymbalta, which has made me so tired all I have done is sleep or lay on the couch with no energy to do anything. Hugs,

clmerritt@...FSG co-moderator

[Guest guest]

Welcome to the group!

Yanosz Descouedresz

Email:

yanosz@...

On Yahoo:

yanoszd

I sometimes pity people who

have never felt just cause

to share the bond between two souls,

one with hands, and one with paws.

New Member

> Hello,

> I'm new here and have been for a few days.....Today

> I'm trying to read my e-mails from the 8th of Dec. so

> many to figure out what is going on. I have

> Fibromyalgia and every thing it gives. I'm 58yrs.

> old, 3 Son's and 2 grandson's 1 wonderful

> daughter-in-law and a husband who is as supportive as

> can be....I'm allergic to all anti-depressants and

> most pain meds, well,, all pain meds except maybe

> Advil and celebrex some times and they don't work that

> much....I live where it is very cold now and I sure

> hurt lately and I do think my husband gets a little

> tired of it. I'm working with a PA at the Mental

> health place by me and she and I are trying different

> things to help me just to sleep and keep things in

> focus. I will not try to write everything about me

> now, I'll do it in doses (grin) I can't waite to get

> into the swing of things here and get advise and

> listen to all my fellow pain sufferers. I laugh allot

> and try to see good and fun in all I do but it gets

> hard when I have a flair up like right now. I will

> read as much of what you all contribute and catch up a

> little.

> Bless you all

>

>

> My theory on housework is, if the item

> doesn't multiply, smell, catch on fire

> or block the refrigerator door let it be.

> No one cares. Why should you?

>

> __________________________________________________

>

[Guest guest]

Hi Lori, I'm from NC, and have also had this illness a long time, but also just diagnosed in 2000. Diet depends a lot on the person, but for me getting rid of sugar, caffiene and gluten helped a lot...gluten is in wheat, oats, barley...probably some other grains but for me buckwheat, quinoa and corn are OK. I can also use a little honey and maple syrup for sweets. I have a lot of other food allergies, so won't go into that. Some of the other folks here, like Deb, are better with supplement info than I am. Welcome. Hang in there. Riverblondefaith65 wrote: Hi,My name is Lori and I am from New Jersey. I am the mother of two wonderrful girls ages 5 and 10. I was diagnosed with fibromyalgia right after my youngest daughter was born in 2000. I suspect

I have had fibro for 20 years. Previous doctors told me it was all in my head. When I was diagnosed I was relieved becuse I finally knew what was wring with me, but I get frustated at times because all the meds I have been on and nothing seems to help. I don't know anyone around me that has fibro so I don't know what suppliments to try or how olong to take them for. Alos. I been looking for a diet to help. Can anyone out they give me some advice on this?Thanks Lori.__________________________________________________ __________________________________________________

[Guest guest]

Hi Lori:

It is such a blessing to meet you and welcome to the group. This is a wonderful group of people that will support you and give you a lot of information.

I am 43, mom to 2 and stepmom to 4 boys, so we have 6 boys in total. Two of our boys are married and we have one granddaughter who will be 3 months old on Christmas.

The doctor is in the progress of eliminating everything he can before he gets down to business and tells me it's fibro. All my test results are coming back normal, but I have horrible muscle aches. Some days I can barely lift a pencil. I will be so glad whenever he gives me a diagnosis.

Hugs,

New Member

Hi,

My name is Lori and I am from New Jersey. I am the mother of two wonderrful girls ages 5 and 10. I was diagnosed with fibromyalgia right after my youngest daughter was born in 2000. I suspect I have had fibro for 20 years. Previous doctors told me it was all in my head. When I was diagnosed I was relieved becuse I finally knew what was wring with me, but I get frustated at times because all the meds I have been on and nothing seems to help. I don't know anyone around me that has fibro so I don't know what suppliments to try or how olong to take them for. Alos. I been looking for a diet to help. Can anyone out they give me some advice on this?

Thanks

Lori.

__________________________________________________

[Guest guest]

Hello Liz, Thanks for welcoming me to the group. you are the only one I've heard from so far. Is there anything that you've tried for fibro that helps? If so please give me some suggestions.Liz Hartford wrote: I use to live in Gulfport boy do I miss it there. Welcome to the group I am liz 30 married for 13 years with 2 great kids. I know what you mean I have my days too. Today I had to go grocery shopping and thank goodness for my kids or none of the food would have made it in the house and wouldn't have gotten put away. My husband supportive but he travels most of the time for his job so he isn't home much. I broke down and hired a housekeeper. I had too I couldn't keep up with it. Welcome to the group this is a great bunch of people! Liz wrote: Hello! My name is And I'm new to the group. I would just like to tell you all a little something about myself. First of all, I am 44 yr.s old, am a mother of 5 ranging in age from 28yr.s to 7yr.s,4 boys and a girl.I also have a very supportive and loving husband to which I've been married for 16 yr.s.Our 16th. anniversary will be December 30, 2005.I had fibro before I was finally diagnosed in 1995 but didnt know what it was.Today has been a really bad day. I could hardly get out of bed this morning.I live in Mississippi and would like to know if anyone out there knows of a dr. in the Hattiesburg Ms. area that treats fibro. I'm at my wits end to find some relif. Nothing I've tried so far

works for long. http://www.surfjunky.com/?r=elizabethmoscowAre you a Surf Junky, it pays to be! http://www.sendmoreinfo.com/ID/2991777 Get Paid to read emails! This is an awesome company! Yahoo! ShoppingFind Great Deals on Holiday Gifts at Yahoo! Shopping

Yahoo! for Good - Make a difference this year.

[Guest guest]

Thank you , I do find that soaking in a tub does help some.I'm going to invest in one of those bathtub spas, it sounds relaxing.I also find that the bed hurts me.Is there a bed that helps with fibro pain? wrote: welcome new member, I hope this site will be of use to you. some days I can't even get on my computer to read these letters people post, but I am here today. I have a bathtub spa that my boyfriend got me and it helps take the edge off my pain, enough to sleep at night anyways. Also try sitting wrapped up in and electric blanket to warm yourself, it might help, never know. I also put a pad on my bed cause the mattress was hurting me and well at least it don't hurt as much. As far as meds go

I am sorry to say I have no advice to offer as none ever work for me either. but I just do as much housework as I can, like 15 minutes at a time and then take a break and then go back, can't stay on my feet to long, but at least ya get some done anyways. I hope some of this is helpful to you.

Yahoo! DSL Something to write home about. Just $16.99/mo. or less

[Guest guest]

there might be a bed but its so expensive 800.00 for the bed cant just get the mattress josiee Dampier wrote:

Thank you , I do find that soaking in a tub does help some.I'm going to invest in one of those bathtub spas, it sounds relaxing.I also find that the bed hurts me.Is there a bed that helps with fibro pain? wrote: welcome new member, I hope this site will be of use to you. some days I can't even get on my computer to read these letters people post, but I am here today. I have a bathtub spa that my boyfriend got me and it helps take the edge off my pain, enough to sleep at night anyways. Also try sitting wrapped up in and electric blanket to warm yourself, it might help, never know. I also put a pad on my bed cause the mattress was hurting me and well at least it don't hurt as much. As far as meds go I am sorry to say I have no advice to offer as none ever work for me either. but I just do as much housework as I can, like 15 minutes at a time and then take a break and then go back, can't stay on my feet to long, but at least ya get some done anyways. I hope some of this is

helpful to you.

Yahoo! DSL Something to write home about. Just $16.99/mo. or less

Yahoo! DSL Something to write home about. Just $16.99/mo. or less

[Guest guest]

>Hi Lori. My name is Amy and I'm new here too. I live in New

Jersey. what part are you from? i live in cape may county, where the

penninsula is. i have had fibro for almost five years. does it get

any better with time? just wondering. anyway, it's nice to meet you

from one Jersey Girl to another.

amy>

>

> __________________________________________________

>

[Guest guest]

Hi Amy, It is nice to meet you. I am from Burlington County. It

is good to know someone else in Jersey with fibro.

Hope we get to talk soon.

Lori

> >Hi Lori. My name is Amy and I'm new here too. I live in New

> Jersey. what part are you from? i live in cape may county, where

the

> penninsula is. i have had fibro for almost five years. does it

get

> any better with time? just wondering. anyway, it's nice to meet

you

> from one Jersey Girl to another.

> amy>

> >

> > __________________________________________________

> >

[Guest guest]

> wrote:

>Unfortunately, my pain is getting worse. I am frustrated, I am hurting, I am

barely able to function.  I have no choice in the matter, unfortunately, because

I have kids, work and household tasks that simply HAVE to get done.

 

 

,

 

Welcome to our family!  I am sorry you are in such pain and that you have to be

here but, you are in the right place for understanding and an ear for those

times that you want and need to be heard. 

 

There are so many members that will be able to relate to your story and that

helps because you'll at least know you aren't alone.

 

I have kids too, ages 20, 15 and 4 and they try to be understanding, but

sometimes that just doesn't cut it, huh?  You just want to be the mother that

you want to be and they need but you have no control over it. 

Just the other day, my 4 year old had to sit and watch 8 hours of movies, and

accepted that even though she was " sad because she just wants me to play with

her " , because I could not move because of my pain level that day.  I felt like a

complete failure! 

 

I am so sorry that you have such a complicated situation with finding pain

relief!  You sound like you have doctors that are caring so with that, I am sure

they will continue to work with all they have, to give you the relief you

deserve that will ensure your health and well being. 

 

Please know we are here for you through thick and thin!  For the good days and

the bad, through tears and anger and all that other stuff that comes along!

 

Take care and keep on keepin on!

 

Janeene

[Guest guest]

Thank you, Janeene.

While friends and family are sympathetic and try to relate, they just

do not understand. They ask: " How are you today? " And I know they

mean well, but I get tired of trying to brush by it with a

satisfactory answer. I've taken to saying " The same as I am every

day. I hurt. " Which is kind of obnoxious, but I want them to

understand that I don't magically feel better one day from another.

So, my big question is HOW do you get a 4 year old to watch movies for

8 hours? I can't seem to get the kids to sit still for 20 minutes.

We spend a vast portion of our day at parks and in the backyard (after

school of course), and it's all I can do to explain to them that no,

mommy can't hold them on her shoulders to carry them across the monkey

bars, since they know how to do it themselves.

Or that mommy can only push them x number of times on the swing and that's it

because it hurts just too much. Or that no, I can't carry you just because

you're having a tantrum; I know you're 6, but unless you want to walk the

stroller is it; no I can't play tag right now. I can't even imagine them being

willing to sit for an hour to watch a movie while mommy rests.

I know I am lucky that I have doctors that are caring and

understanding. Unfortunately they seem as helpless as everyone else.

Since they aren't able to figure out what's wrong, they just throw

pills at me and try to get me through the day.

I think the single biggest frustration in all of this is that without a

diagnosis, I can't try to " fix " the problem, and I feel like I have nowhere to

go from here.

Thanks for the ears and the welcome.

[Guest guest]

Living in Portland, I too have been to OHSU, though for

neurophychiatric testing. I don't recommend them for these tests. They gave me a

modified version of their alzheimer's test and called it done.

My husband underwent the same thing but at a better clinic and

the tests were not alike in near any way. Well, I had both my sons

there and would recommend them for problem deliveries or pregnancies

anyway.

Have you been seeing various specialists, trying to get a diagnosis? Do they

have and leads or theories yet?

I also have migrant pains in joints, pins and needles, numbness, etc. I can't

say Lyme disease is responsible for all of what is wrong with me now, but Lyme

is where it started for me.

And I relate to sometimes wishing I'd just draw my last breath and get it over

with, that I just don't have any more strength in me to deal with The Pain.

Sometimes it feels like no one cares or understands.

Then I come to this group and find compassion, helpful advice, other

people's stories who are much worse off than I am, and a place to rant and rave

if need be. Jump on in, your pool mates are awesome!

in Oregon

--- Becky Chase wrote:

> OHSU was seeing me, but could not diagose me. my pain gets severe

where at times i would like to end my life. it travels in me and can

jump from place to place within seconds it has hit everywhere except

my abs and butt. just like its traveling in me.

[Guest guest]

Hey ,

I think you should see a pain management specialist. Your family doc is

like most family docs, very conservative about treating you with narcotics.

That is simply not an area in which most family practitioners are well

versed or comfortable in. Better to see someone who specializes in pain

management, who knows the ins and outs of which meds work best together, and is

willing to work with you to see what is most effective for your pain.

It took my pain doc and myself working together as a team to determine what

works best in what conditions/times.

As to what meds should you try, that is for the two of you to work out;

migraines are treated with different meds than pain management meds. I

doubt that any narcotics are ruled out for the migraines, but other drugs will

need to be examined for possible drug interactions.

Good luck to you.

--

Helga

[Guest guest]

Hello , and welcome (unfortunately). I hope we can help you.

I agree that you should see a pain specialist. If you are not getting relief

from your current management, and your internist? suggests that, it implies that

he or she feels that you will get better care there.

Of course we cannot say what you should be on, other than that either more or

different so that you get more relief. The pain doctor will have to evaluate

the sequence of what you have tried, what doses you got to, why you had to stop,

and what has worked.

Therefore, in preparation for that visit it would be helpful if you sat down and

tried to piece together the timetable of what you took, etc. In that way you

can work together to slowly make changes, one thing at a time.

You should be able to get the names of physicians from your insurance carrier,

and/or from the major pain organizations. Perhaps someone can privately make a

recommendation if you are in a city one of the other members lives in.

Good luck,

Enid

[Guest guest]

> Welcome Charisse,

> Your dilemma looks like no-brainer - a holistic doctor with MS who

has been symptom free for 14 - 15 years versus one of the mainstream

drugs that may mask symptoms.

Yeah, I'll second that. The drugs don't even offer a 50-50 chance at

halting this. (I think the efficacy rate is around 30% for all of

them?)

Charisse, I'd be interested to know what the holistic doctor you had

been seeing recommended in between those 2 mri's. I've been on the

Best Bet Diet for almost a year and doing acupuncture as well as some

other stuff. My own case started with optic neuritis as well, in

Oct '07.

Welcome!

Crystal

[Guest guest]

The statistics on the MS meds is that they lower the frequency and

severity of attacks by 30%. And this has only been shown to be the

case for the first year of MS, as longer-term studies have not been

completed.

Many people misconstrue this to mean that the MS drugs are effective

in 30% of people. That is not the case. Again, the studies show that

overall the frequency and severity of attacks is lowered by 30% in

people with MS who are taking the meds.

I have been battling MS for 2 years through alternative and natural

methods. Personally I have not done that great, but I do read

many,many stories of people who are getting better with the

natural/alternative methods and it seems more people are getting

better with the natural/alternative methods as opposed to those

people doing the conventional medicine.

Some of the alternative things focus on special diets (major changes

in diet), exercise, meditation, removal of mercury fillings from the

mouth, and various supplments, and a postitive attitude. There are

also many protocols that have helped some such as Klenner Protocol,

hormone therapy, and Calcium EAP injections. There are many other

things as well. The Best Bet Diet seems especially effective for

people with the relapsing-remitting type.

I would be interested to know the name/location of the holistic

doctor you mentioned who has been symptom free for many years.

Regards,