New to group

June 20, 2008

I have a boy of 14 andÂ a girl of 12-going on 25--bless her cotton socks,Â its

good to see your girl going to colege and doig something good , thanks for the

kind note and hope to speak with you again soon,

karl xx

Re: Re: new to group

hello, karl!!

i am sorry to hear that you are having issues with your stim...hopefully if

you give it the time to scar into place, hopefully those weird things will

stop!

how old are your kids? I am blessed with a 17 year old daughter. My

husband and I still cannot believe that she is going to college next year.

I really hope that your stim takes away your pain...keep your fingers

crossed!

welcome to the group! there are a great amount of really kind people here.

the group owner's name is Mike. He is a great guy!! his compassion and

efforts have made this group possible!!

wishing you luck!!

kathy

************ **Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos. aol.com/used? ncid=aolaut00050

000000007)

June 23, 2008

Welcome to the group Karl, if one has children it is hard on them in their own

way. It is sometimes hard for them to explain the pain they are hurting. I

have one at home a 14-year old, a son in college, a girl in college and a 22-

year old who is married with two daughters.

From: KARL OUTRAM <karloutram@...>

Subject: Re: Re: new to group

Stimulator

Date: Friday, June 20, 2008, 11:52 AM

I have a boy of 14 and a girl of 12-going on 25--bless her cotton

socks, its good to see your girl going to colege and doig something good ,

thanks for the kind note and hope to speak with you again soon,

karl xx

Re: Re: new to group

hello, karl!!

i am sorry to hear that you are having issues with your stim...hopefully if

you give it the time to scar into place, hopefully those weird things will

stop!

how old are your kids? I am blessed with a 17 year old daughter. My

husband and I still cannot believe that she is going to college next year.

I really hope that your stim takes away your pain...keep your fingers

crossed!

welcome to the group! there are a great amount of really kind people here.

the group owner's name is Mike. He is a great guy!! his compassion and

efforts have made this group possible!!

wishing you luck!!

kathy

************ **Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos. aol.com/used? ncid=aolaut00050

000000007)

June 23, 2008

Hi Kathy, , welcome to the group, You will learn alot from this group. I

am a I have 4 children, two grandchildren. I have had RSD for 8 years. I

have always had Medtronic implants with no problems.

From: k.klier <ripley1966@...>

Subject: Re: new to group

Stimulator

Date: Thursday, June 19, 2008, 2:35 PM

Kathy,

Thank you for the welcome. I am not worried about handling the surgeon

I can do that on my own. It's just frustrating: ( I'm curious how

others are finding the use of the stimulators over the long term as

well as individual's personal experience right after surgery.

Look forward to reading everyone's responses,,

Kayleen

>

> HELLO KAYLEEN!

>

> MY NAME IS KATHY. I AM SO SORRY THAT YOU AND YOUR HUBBY, KEITH,

HAVE BEEN

> GOING THROUGH SUCH A HARD TIME!

>

> MY HUSBAND, LENNY, AND I CAN REALLY UNDERSTAND WHERE YOU ARE COMING

FROM.

>

> WE DO NOT KNOW YOUR FRUSTRATION WITH YOUR SURGEON, AND I HOPE OTHER

MEMBERS

> CAN HELP YOU WITH THAT ISSUE...AS WE ARE A GREAT GROUP...REALLY

SUPPORTIVE

> AND REALLY HELPFUL TO EACHOTHER.

>

> THE GROUP LEADER'S NAME IS MIKE...AND HE IS A GREAT GUY!!

>

> I HAVE HAD CHRONIC PAIN NOW FOR 25YEARS...I HAVE A CONDITION CALLED

> RSD...WHICH I AM SURE THERE ARE A TON OF MEMBERS WITH THIS ALSO.

>

> I HOPE YOU FIND YOUR ANSWERS HERE AND PLEASE KNOW THAT WE ARE ALL

HERE TO

> HELP AND TO EVEN GIVE A GIGGLE TO EACHOTHER WHEN REALLY NEEDED.

>

> TAKE CARE!

>

> KATHY

>

> ************ **Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars.

(http://autos. aol.com/used? ncid=aolaut00050 000000007)

>

June 23, 2008

Yes I am on the same dose hon I still get like this.

Did you know guilt is a symptom of B12 problems and deficiency is

related to thyroid problems. You might want to give a sublingual

liquid a go if you are not optimum (that doesnt necessarily mean you

have to be below range). I am going up 1/2 grain next week, wish me

luck

love

Dawnx

June 23, 2008

Hi there,

Welcome to the group. There are lots of lovely, supportive people

here so please don't feel lonely. You are not alone. Big hugs your

way.

I'm not a doctor and can only write from my own experiences, but am

happy to share info with you. It is always best to check things out

with your doctor to make sure that any suggestions are suitable and

safe for you. (:

Could you please post your most recent thyroid test results and the

corresponding reference ranges here? We all tend to do this when we

first join the forum, so that others can look at the results and see

what is going on & provide input. Have you had your thyroid auto-

antibodies tested? Have you had any other tests done? If so, could

you please post the results and the reference ranges for those tests

too.

If you haven't had tests done for a while, the tests that are useful

to have are TSH, free T4, free T3 and the thyroid auto-antibody test

that I mentioned above. The auto-antibody test shows whether you have

an autoimmune disease. I was tested and found out that I have

Hashimoto's Disease.

Depression is one of the listed symptoms of hypothyroidism, so it is

important to work out what is happening with your thyroid. You

mentioned that cognitive therapy helped you last year. Would you

consider seeing someone again to have some more cognitive therapy or

just have a 'refresher' session or two to re-jig your memory about the

techniques? If it helped before, it may be worth giving it another

go. It is important to get support if you are feeling depressed.

Do you take a Vitamin B complex supplement? I found that it helps me

a lot with my mood and general wellbeing. You may need to speak to

your doctor or naturopath about a suitable supplement as I found that

some suited me better than others. I've provided a link (below) to

Vitamin B12 deficiency and depression. Sometimes the links are too

long for this forum, so if this is the case, just copy and paste the

link into your web browser.

www.mayoclinic.com/health/vitamin-b12-and-depression/AN01543

Here is some info from a very useful site called 'lab tests online'.

I looked on the UK version for info about the folate & B12 test, but

couldn't find it listed, so I've obtained info about it from the

Australian version of the 'lab tests online' site. If you ever want

to check out info about a particular test, this is a good site to

refer to. You may need to copy and paste the link again. Copy from

www.lab through to .html and put it into your browser.

www.labtestsonline.org.au/understanding/analytes/vitamin_b12/test.html

Bob or Sheila (one of the forum moderators) can probably shed more

light on Vit B's importance to the thyroid. I know it is important

for me for other reasons so I keep on taking it, but can't remember

why it is important to the thyroid just now.

The other thing that MAY be linked is coeliac disease or intolerance

to gluten.

If you want to be tested for coeliac disease it is VERY important to

keep eating gluten while you are being tested. I eliminated gluten

entirely from my diet about 8 years ago (for medical reasons) and have

found that my mood is a lot better since I did that. It may or may

not be the case with you. Perhaps just search on the web under '

depression + gluten' or 'depression and coeliac disease'. The info

in this link www.ncbi.nlm.nih.gov/pubmed/10086676 is really just an

observation, but it is an interesting observation.

There is often a link between thyroid autoimmune conditions and

coeliac disease. Treatment for coeliac disease includes ceasing to

eat gluten in any form. It is a bit tricky to start with, but in my

case I wouldn't dare intentionally have a tiny bit of gluten ever

again because I feel terrible if I accidentally ingest it.

Here is info from lab tests online re coeliac disease testing if you

are interested.

www.labtestsonline.org.uk/understanding/analytes/coeliac_test/sample.ht

ml

I hope this info is of some assistance and if you have any questions,

please just ask (:

I also hope that you will feel much better very soon.

Hugs

P

>

> Hello to all. I was diagnosed with hypothyroidism 18 months ago and

> have worked my way up to 90mg Armour. I feel OK but I am very

> depressed and feel very loney and cut off. I had cognitive therepy

> last year and it helped. Does anyone else get like this? I am very

sad

> most of the time and have no motivation then I feel guilty as if I

do

> it to myself but I can't help it. Please help

>

June 24, 2008

Hi,

I am sorry to hear that you are still struggling alon, but take heart,

the research shows thatit can indeed take some people up to 2 years

before they really just begin to feel well.

Perhaps, you could give a bit more history on what 'kind' of

hypothyroidism, you have and the background leading up to your

diagnosis.

Congratulations by the way on getting diagnosis and treatment through

the regular channell.

Lastly, maybe, you could take a moment, step back and think about

what 'kind' of depression you are experiencing-its just that there are

so many faces to depression. You say you are sad- do you have bouts of

tearfulness? do you feel melancholy and blue, like there is nothing

good in the world? or is it the lack of motivation like there is

nothing you want to do in the world? are you angry and irritable at all?

there are some pretty straitforward self assessment tests out there for

stress and depression, that will give you scores and indicators.

By the way cognitive therapy is certainly not the be all and end all

in the line of psycological remedies, as useful as it is for many

people, it is not always appropriate nor successful for everyone.

Take care of yourself,

Wannette

>

> Hello to all. I was diagnosed with hypothyroidism 18 months ago and

> have worked my way up to 90mg Armour. I feel OK but I am very

> depressed and feel very loney and cut off. I had cognitive therepy

> last year and it helped. Does anyone else get like this? I am very

sad

> most of the time and have no motivation then I feel guilty as if I do

> it to myself but I can't help it. Please help

>

June 24, 2008

I agree, it has taken me 20 months to begin to feel I am getting somewhere and have had 4 T4 increases in that time, I never knew this illness was so bad until I got it!

Funny really because when I was given my first prescription of T4 the nurse said to me ' oh well you will feel much better in a couple of weeks!' I think she must have meant a couple of years!

From: wannette7 <wannette7@...>Subject: Re: New to groupthyroid treatment Date: Tuesday, 24 June, 2008, 10:00 AM

Hi, I am sorry to hear that you are still struggling alon, but take heart, the research shows thatit can indeed take some people up to 2 years before they really just begin to feel well.Perhaps, you could give a bit more history on what 'kind' of hypothyroidism, you have and the background leading up to your diagnosis.Congratulations by the way on getting diagnosis and treatment through the regular channell.Lastly, maybe, you could take a moment, step back and think about what 'kind' of depression you are experiencing- its just that there are so many faces to depression. You say you are sad- do you have bouts of tearfulness? do you feel melancholy and blue, like there is nothing good in the world? or is it the lack of motivation like there is nothing you want to do in the world? are you angry and irritable at all?there are some pretty straitforward self assessment tests out there for

stress and depression, that will give you scores and indicators.By the way cognitive therapy is certainly not the be all and end all in the line of psycological remedies, as useful as it is for many people, it is not always appropriate nor successful for everyone.Take care of yourself,Wannette>> Hello to all. I was diagnosed with hypothyroidism 18 months ago and > have worked my way up to 90mg Armour. I feel OK but I am very > depressed and feel very loney and cut off. I had cognitive therepy > last year and it helped. Does anyone else get like this? I am very sad > most of the time and have no motivation then I feel guilty as if I do > it to myself but I can't help it. Please

help>

Sent from .

A Smarter Email.

June 25, 2008

the group is helpful to me, as sometimes with chronic pain one can feel very

isolated and forgotten!

its good to se that you have a grip on your pain and all is well,Â my partner

decided she could not cope with my pain any longer after a eight years and

deceded she would rather sleep with my best freind whie i was having a pliff

cage fittted to my spine to stabilise it, " well he did say he'd lok after

things while i was in hospital for me ! " how nice of him to keep my side of the

marrital bed warm for me also ?? i now live as a single pqrent with my children

who are my inspiration to get up of a morning and live life as best i can, they

are my reason to breathe,

your truly

Â karl xx

Re: Re: new to group

hello, karl!!

i am sorry to hear that you are having issues with your stim...hopefully if

you give it the time to scar into place, hopefully those weird things will

stop!

how old are your kids? I am blessed with a 17 year old daughter. My

husband and I still cannot believe that she is going to college next year.

I really hope that your stim takes away your pain...keep your fingers

crossed!

welcome to the group! there are a great amount of really kind people here.

the group owner's name is Mike. He is a great guy!! his compassion and

efforts have made this group possible!!

wishing you luck!!

kathy

************ **Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos. aol.com/used? ncid=aolaut00050

000000007)

June 25, 2008

Hi again Suzanne,

I have used CoQ10 in the past under my doctors supervision. I had a

blood test which showed that my levels of CoQ10 were below the normal

reference range. After supplementation with CoQ10 for a while my

doctor ordered another blood test to monitor it and the levels were

quite high so I stopped using it. I didn't feel bad, however it was

pointless spending a lot of money on an expensive supplement when my

body obviously didn't need so much. Even though it costs money to

have the test, it is worth doing because you will find out whether you

actually need to use CoQ10 or not. As far as noticing a difference to

my health, I probably had a bit more energy. I have a friend with

cancer and CoQ10 has been invaluable for her. She has found it to be

very beneficial.

P

>

> Oh thank you all so much. You are so kind and helpful. I am really

> glad I found you. Yes I will post my results and history. I am

going

> to start taking Vit B complex tonight and I am gling to take Q10.

Does

> anyone else take Q10? I hope I have done this post correctly.

>

> Kind regards,

>

> Suzanne

June 25, 2008

Hi,

Welcome to the group!

90mcg Armour isn't a very high dose. Are you going it alone, or do you

have a doc who prescribes this? I ask as depression is a symptom of hypo,

most especially low T3. Don't feel bad about it, because with low thyroid is

is quite normal- I suffered myself when I was undertreated.

Subject: New to group

Hello to all. I was diagnosed with hypothyroidism 18 months ago and

have worked my way up to 90mg Armour. I feel OK but I am very

depressed and feel very loney and cut off. I had cognitive therepy

last year and it helped. Does anyone else get like this? I am very sad

most of the time and have no motivation then I feel guilty as if I do

it to myself but I can't help it. Please help

------------------------------------

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing

medication.

June 27, 2008

Hi Sue

Welcome to our forum and I hope you get all the help and support you need. I am sorry to hear that you are feeling so lonely and cut off, but I hope that you will meet many friends on this forum that you can chat with and realise that you are not alone in this world of thyroidians. Many of us have felt like this and often, it is the fault of doctors, some of whom have the ability to make us feel very isolated and alone and that you are the only one who is suffering with your symptoms. You are not. There are tens of thousands around the UK who know exactly what you are feeling like.

You have done well on getting Armour. Did you do this on your own or through your GP. When did you last have an increase in your dose and do you have any thyroid function blood tests you could show us the results of. If so, do also show the reference range for each test so that we can hopefully help you understand what might, or might not, be happening.

There could be a problem in that you could be suffering from one of the many 'associated conditions' that go along with being hypothyroid, such as low adrenal reserve, systemic candidiasis, low ferritin (stored iron) etc. Go to our website www.tpa-uk.org.uk - click on 'Hypothyroidism' in the Menu, and then in the drop down Menu, click on 'Associated Conditions" and read the information there to see if you might be suffering any one of them. If you feel this is a possibility, let us know and we will try to point you in the direction of how to get these tested and/or treated. Quite often, Armour cannot be absorbed properly if you have any of these, but we can turn things around - so please keep your chin up and don't let things start to get you down. You have come to the right place.

Luv - Sheila

>> Hello to all. I was diagnosed with hypothyroidism 18 months ago and > have worked my way up to 90mg Armour. I feel OK but I am very > depressed and feel very loney and cut off. I had cognitive therepy > last year and it helped. Does anyone else get like this? I am very sad > most of the time and have no motivation then I feel guilty as if I do > it to myself but I can't help it. Please help>

June 27, 2008

Hi everyone,

Thank you for lovely support. I am so glad I found you. I will give

you a bit of my history as to what appeared to bring this on. I will

try to be brief as there were some very traumatic things.

First of all, my husband suddenly became unwell with just a sore leg,

what ensued was a nightmare - it was a clot and his leg was to be

removed that night. They then decided to keep in in hospital with

warfarin as his other veins luckily took over. The following month

our only daughter was to be married in Cyprus and we could not go

because my husband was still not stable. I seemed to be coping but

the day my daughter got married I " lost the plot " and could not stop

screaming and ended up in A & E. The crisis team came out the next

day to check on me and suggested I see my doctor that day. This is

when he organised the blood tests and they came back as follows:

TSH 8 (0.3 to 5.0) T4 11 (9 to 24) Antibodies 436. I was given

levothyroxine but my mother took that and her hair fell out and she

was depressed and went to hell and back so I got in touch with a

Doctor who supplies me with Armour (as our local practice refuse) and

I have gradually built up to 105mg and soon to be 120mg and my basal

temps are still averaging approx 36.1. My latest results (6 months

ago) where TSH = 0.425 - T4 = 10. Sorry this is so long but there is

so much more. I have had suicidal thoughts which scare me but I feel

there are people out there who understand me now. Thank you. Suzanne

x

>

> Hi Sue

>

> Welcome to our forum and I hope you get all the help and support you

> need. I am sorry to hear that you are feeling so lonely and cut

off, but

> I hope that you will meet many friends on this forum that you can

chat

> with and realise that you are not alone in this world of

thyroidians.

> Many of us have felt like this and often, it is the fault of

doctors,

> some of whom have the ability to make us feel very isolated and

alone

> and that you are the only one who is suffering with your symptoms.

You

> are not. There are tens of thousands around the UK who know exactly

what

> you are feeling like.

>

> You have done well on getting Armour. Did you do this on your own or

> through your GP. When did you last have an increase in your dose

and do

> you have any thyroid function blood tests you could show us the

results

> of. If so, do also show the reference range for each test so that

we can

> hopefully help you understand what might, or might not, be

happening.

>

> There could be a problem in that you could be suffering from one of

the

> many 'associated conditions' that go along with being hypothyroid,

such

> as low adrenal reserve, systemic candidiasis, low ferritin (stored

iron)

> etc. Go to our website www.tpa-uk.org.uk <http://www.tpa-

uk.org.uk> -

> click on 'Hypothyroidism' in the Menu, and then in the drop down

Menu,

> click on 'Associated Conditions " and read the information there to

see

> if you might be suffering any one of them. If you feel this is a

> possibility, let us know and we will try to point you in the

direction

> of how to get these tested and/or treated. Quite often, Armour

cannot be

> absorbed properly if you have any of these, but we can turn things

> around - so please keep your chin up and don't let things start to

get

> you down. You have come to the right place.

>

> Luv - Sheila

>

> >

> > Hello to all. I was diagnosed with hypothyroidism 18 months ago

and

> > have worked my way up to 90mg Armour. I feel OK but I am very

> > depressed and feel very loney and cut off. I had cognitive therepy

> > last year and it helped. Does anyone else get like this? I am

very sad

> > most of the time and have no motivation then I feel guilty as if

I do

> > it to myself but I can't help it. Please help

> >

>

June 29, 2008

Dear Holly,

I am sorry to hear about the problems that you are experiencing,especially at

such a young age.

I am double your age and have never heard of " prune belly " . Was this an

official name for it given by a Dr.?? I ask because I feel as tho my stomache

sticks out all the time. This has only been for the last year or so that I

feel that way. I just don't feel like my stomache muscles are holding me in the

way that they used to. Is their anything that we can do for this? Would

stomache exercises help? I have an old fusion from the late 1960's. I do not

have rods, only my ribs that were cut, ground up and used to hold the fusion in

place. Well, it held for a long, long time. However the last 4 or 5 years it

has been all downhill.

The Dr.'s term it a failed fusion. I was told that my only options were to have

the total rod surgery, and of course their are NO guarentees that it would help

with the pain. My pain seems to be in my left hip and butt area. I also have

arthritis and pain in my neck and shoulder area on the right side due to my S

shaped curve. At this time I am just taking pills for the pain, 12 hour pain

pills, plus vicodin for break-thru pain.

Does anyone have any suggestions for me?? I to can sympathise with you on the

pills making one feel sleepy and not fully in control if we need to take more

meds at certain times. I have to take to my bed, my wonderful sleep number bed

which we got about 4 years ago at certain times just to help my back muscles all

" let go " .

Holly, I to have had itchy feelings in an area in my back. I think that it is

due to cutting thru certain areas. You won't believe it, but the itching did

stop, and normal feelings did come back to this area AFTER like 15 years. I do

sympathise with you tho, because this is an " awful " feeling.

Sincerely,

Bonnie

June 29, 2008

Holly,

Explore your phone book and ask around if anyone knows of a good myofascial

release practioner in your area. A good body therapist trained in that

technique may be able to 'release' your muscles and help you get some relief.

Mine

is also a physical therapist which is a bonus. Jolene

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

July 3, 2008

Hi Holly! I was fused at age 11 from T3-L2 with a Harrington Rod.

I've often been frustrated that no matter how 'in shape' I am, my

tummy is flabby. I was a fitness fanatic in my 30s, but still had a

pooch that I could do nothing with. Sadly, misinformed physical

therapists tried to get me to do all sorts of exercises that ppl with

scoliosis & fused spines should never even attempt. Just because they

are a physical therapist doesn't mean they are informed in scoliosis.

It's the same with orthopedists; that's why it's always best to see a

scoliosis specialist if possible.

I notice if I've eaten too much or put on just a small amount of

weight on my 5'1 " petite frame that the additional tummy area will

pull on my back. I haven't heard it termed prune belly before, though.

Sadly, I am well too familiar with the burning shoulders, but that

has decreased since I've stopped working. A couple of hours at a desk

will send me into a tailspin now; no wonder I was constantly burning

when I had a desk job & sat at a computer 8-16 hours a day! Just

moving a fraction of an inch incorrectly or stretching to reach for

something can cause my back to 'go out.' This occurs in the lumbar &

sacrum area and will render me immobile, making any movement at all

excruciating. I have a couple of canes & a wheelchair for the times

it gets really rough. Just getting up to go to the bathroom is

something I put off until I'm about to burst during these episodes.

Simply turning over in bed is a major feat. I've tried all my standby

therapies of massage, accupuncture, meds...too many to list,

actually. It finally just eases up when it's good and darn ready to.

Until that time, I simply increase my meds & reduce my activity -

occupying my time with reading, tv & talking on the phone if the pain

isn't too great (sometimes it's so bad that breathing is painful).

Ppl can't understand how you can be walking just fine one day & then

the very same activity will put you in pain another day. They can't

visibly see anything wrong with you & many will judge you for parking

in the handicapped spaces. If it were not for the handicapped spaces,

I would not be able to get any shopping done, because by the time I

arrived at the front of the store, I would be in too much pain to

walk thru the store. Thankfully, more retailers are making motorized

scooters available for their shoppers. These are lifesavers when I

need them, as well. I am very conservative with my steps when those

carts aren't available. That's something the general population

doesn't even have to think twice about. 20 extra steps for

the 'average Joe' could cause our backs to go out & send us crumpling

in a heap to the floor. At that point, then we must get ourselves out

to our cars & somehow drive home. I have a 5 speed & it is hell to

drive when my back hurts. I was supposed to inherit my mother's car

last year, but my greedy sister made sure that didn't happen. Not

only did I need the car for greater ease in driving it, but my car is

18 years old & uses more oil than gas, overheats after idling for 2

minutes, needs a new transmission, & so on.

All of my health challenges have made me see how much ppl take their

health for granted. It's been my experience that strangers, friends &

acquaintances are kinder than family. This seems to be the case for

many ppl I talk to as well. I notice inaccessibility to buildings &

outright discrimination. Even so, most ppl with health challenges

have a better outlook on life than the so called 'normal'

or 'healthy' ppl. I personally know what it's like to have ability to

do something & then lose it, so I'm thankful for everything I can do.

Personally I think I can do a lot, but I recently came upon a very

narrow-minded woman who was talking to her friends about me & saying

my life was such a waste. I thought, " If only this woman had a clue! "

I spend my day contentedly & at peace even when I am in pain. I've

found many creative outlets to occupy my time. In fact, I have so

many interests that I cannot fit them all in! All she sees, however,

is that I'm not physcially able to go, go, go every time I want to.

How sad for her that she must be 'entertained' by the world instead

of entertaining herself, in my opinion. It brings to mind

Reeve & the great physicist Hawking. Our minds, spirits, &

essence is who we are...our physicality is just a brief moment in

time. It will end for all of us, and for some of us the use of our

bodies will change over the years in ways that others cannot

understand. It's up to us to move through our lives finding new

interests to replace things that are becoming difficult or that have

become impossible. Sure, I miss my daily 10 mile bike rides, but my

life is still rich & full. In fact, the days that I am able to be

physical are all the richer because just a few days earlier, I was in

such excruciating pain that the activity was impossible.

I'm not missing out because of physical limitations. The persons with

the narrow minds are the ones missing out because they cannot see the

power of the human spirit.

As for your pain, the muscles are constantly trying to align

themselves into the body's original correct position. It's no wonder

that you hurt. The best relief I've found have been massage

therapists who do deep tissue & have strong hands, and also hottubs

with extremely strong jets. My muscles are so tight & knotted that it

takes a lot to unkink them. ~Moonbeam

>

> I am a 25 yr old female. I had my back fused at about the age of

9.

> It is fused from T4 to L4, using CD rods. I also have prune belly

> syndrome, which pretty much means that i do not have any stomach

> muscles. So my tummy sticks out which causes even more stress on

my

> back. I never had problems growing up but the older i get, the

more

> problems i seem to have. now my hips, shoulders,and neck ( i have

> developed arthritis in my neck)have really been bothering me. I

have

> gone to see orthapaedics my whole life but they cant do anything

> because my spine is already fused. they just tell me to deal with

> the pain. I was always numb around my middle after the surgeries

but

> now it seems to be growing into shoulders. Also, i am not sure why

> but I am always itchy around the numb areas of my back. My

> shoulders " burn " constanly and somes day if i bend wrong or take a

> wrong step my neck/shoulder gets pinched and i cannot move. or my

> hip screws up and i cannot walk. Basically i am sick of

> hearing " just deal with it. " They prescribe me pain pills but they

> dont really work and they make me drowsy, so I cannot take them

when

> i work, which is when it bothers me most. I just dont know what to

> do anymore. Does anyone have any suggestions on what kind of

doctor

> i should be seeing b/c orth. just dont seem to care. Its not the

> spine itself that bothers me. I believe it is my muscles.

>

July 3, 2008

How did you get to such a peaceful place? I have such a hard time coming to

terms with what I can't do. I don't feel my life is wasted, as I do keep busy

within my physical limitations. But I get depressed when I have long periods of

the worse pain. Like you say, there are the better days and the can't hardly

turn over in bed days. I keep thinking I'm going to get better and then there's

something else. I read inspiring books and talk with some really good friends.

But I sometimes feel so isolated because I'm too uncomfortable most of the time

to go to any social activities out side of my house. I walk my dogs. Thank God

for them. I live with my elderly mother who also is very limited, and I moved

across the Country from all the rest of my family. Partly because of the weather

and finances, but partly also because everyone seemed to think that because I

don't have a " job " I'm available for whatever they need. So here I am, finally

able to do nothing if I

want, and it depresses me often.

Just wondering if can pass along some of your outlook!

Re: new to group