still in pain

[Guest guest]

In a message dated 01/20/2002 11:04:32 AM Eastern Standard Time,

dmahon0521@... writes:

> tested for the Parvo B19 virus

Debbie - I was also tested for parvo before I was diagnosed. I showed a

" slight " positive reaction. But I kept getting worse and worse - finally

they figured out it was PA and now, while I'm not full remission and probably

never will be, at least I can say I'm not in constant pain. Celebrex and

vioxx can help, but you really need to talk to your rheumy about something

more aggressive like MTX or enbrel. You have to protect your joints and

anti-inflammatories won't do that.

Just my opinion,

(who spelled her name right this time!)

[Guest guest]

Hi Deb...

Not all doctors know how to treat people with prior fusions. Unfortunately,

instead of referring patients to someone who can treat them, they tell you

to learn to live with your pain. That's ridiculous. There are things that

might help you get out of pain. Where are you located?

Regards,

[Guest guest]

Deb, I read your post and wanted to know, I have VERY similar symptoms, had

my surgery @ age 13, 1989. Harrington rod placement, fusion, etc., @ the

children's hospital in Oakland. I now live in sonoma county, CA. Just wanted to

let

you I am in your area, let me know if I can help in any way, even if it's just

a friendly email every now and then. Take care,

There are two ways to live your life. One is as though there are no miracles.

The other is as though everything is a miracle.

Albert

Einstein

[Guest guest]

I'm in Marin County, CA, though only for another 9 months, when I

finish my graduate degrees. I saw Dr. Gray - he was great,

knowledgable, personable, but not so helpful about pain management.

He did suggest the sleep number bed to help the remaining un-fused

vertebrae. Does it help? Do you have any other suggestions?

Deb

[Guest guest]

Hi Deb...

When you said that the doctor had sent you away with the recommendation that

you get a new bed, I had a clue that you were talking about Dr. Gray. I

think he's a wonderful doctor. He did my surgery. BUT, I think you should

get a second opinion. I don't know if you'd consider more surgery, but

there are many doctors who are having excellent results revising the spines

of people who had prior Harrington rod surgery.

You might be interested in seeing one of these doctors (who all have

considerable experience treating patients such as yourself):

Dr. Bradford, UCSF

Dr. Serena Hu, UCSF

Dr. Sigurd Berven, UCSF

Dr. Vedat Deviren, UCSF

Dr. Booth, private practice in the East Bay

You can get their contact information on my website at:

http://www.scoliosislinks.com/SFAreaSpecialists.htm

By the way, I run the Scoliosis Association of San Francisco. There's a

support group meeting next Monday (10/13). Here's the announcement:

Scoliosis Association

of San Francisco

October 2003

Support Group Meeting

Dr. Booth

Innovations In the Treatment of Scoliosis

Monday · October 13, 2003

7:00PM ­ 10:00PM

Saint Francis Memorial Hospital

900 Hyde St. (corner of Hyde & Bush)

Hoffman Conference Room

Second Floor

San Francisco

Dr. Booth will report on the research and innovations presented at this

year¹s Scoliosis Research Society meeting.

Dr. Booth attended college at the University of California, Irvine and

graduated with honors from Loma University School of Medicine where he

subsequently completed his Orthopaedic Surgery training. After residency

training, Dr. Booth completed a one year fellowship in spinal deformity with

Bridwell, at Washington University in St. Louis.

Dr. Booth is currently in private practice with offices in Pleasanton,

Sonora, , & San Ramon. His practice is limited to adult and pediatric

spinal reconstruction.

If you plan to attend the meeting,

please RSVP:

Racine

email lindaracine@...

Regards,

[Guest guest]

Hi Deb,

I can totally empathize with the weight control issue and the

confusion as to what to do to relieve pain. I have found a good deal

of relief through physical therapy. My PT uses Ultrasound and massage

and supervises my strengthening exercises (keeps me enthusiastic )

Finding a good PT who specializes in the spine and understands

scoliosis and the impact of being fused can be a tall order...

I'm fused L1 to S1 - surgeries 3 years ago at age 47 and I have pain

issues with my SI joints as well. But I have found that when my

glutes and quads etc. are strong, the pain is not quite as bad. I'm

actually going to try a bi-lateral cortizone injection for them in a

couple weeks. I hope this calms them down.

Hope this is of help,

[Guest guest]

, you may have i Arachnoiditis. An inflamation of the Arachnoid. The

middle membrane shield surrounding the spinal cord.

If so, try to find an honest doctor. Too few will diagnose it. Most choose to

call it " failed back syndrome " - which means that you may have had a bad back

to start with and that it was not the fault of surgery. Look it up on Goggle.

Jim

[Guest guest]

Hi, ! I'm so sorry about all you're going through. I haven't

seen a scoliosis/spine specialist since I learned about flatback, so

I think I'll look into that soon. For me the financial burden is

almost as painful as the physical pain I deal with. When I graduate

in May, my insurance is likely to run out, unless I get an ordained

job - which means it will be a while before I can consider surgery,

if that is what I need to feel better.

I'm also new to chat rooms/forums/emails about this, and I have so

appreciated finding others who are going through things - or have

been through it and can talk from the other side.

I'm a little envious about all of you who have children. Because my

condition has been so touch and go for the last 10 years, I know I

cannot care for a child, and I don't think I could take the strain

of pregnancy, etc., even if biologically my body would be ok. So

last year I had a tubal ligation and decided to adopt children when

or if my partner/spouse and I decide to be parents.

I've got so little stamina left to fight for myself medically - I

wore it out two years ago with the PT and pain specialist. Now I'm a

little better off, but I see the symptoms coming back again . . . I

don't think I can deal with this again. And I don't think I can face

anything invasive - even injections. It just feels too violating at

this point. I still wake up every day sad and angry that it still

hurts. Like others, I get the most relief from lying down, but I'm

so driven professionally that I get out of bed every morning and

push myself to live as 'normal' a life as possible. I've had to

learn a lot in the last 4 years that I'm not normal, and can't be

expected to do nearly as much as my 'peers.' I started considering

myself as disabled and that has helped me give myself more room to

take care of myself, be gentle, and work slowly at anything physical

(walking, laundry, exercising). My faith has also been some help to

me.

Well, I guess that's a long ramble. Let me know how I can be of help

too. Thanks everyone for being willing to respond.

[Guest guest]

How many of you out there, in spite of the meds you're on, still have

significant pain daily? I've been diagnosed w/ RA & SLE. The onset of which

happened after an accident w/ significant damage to my pelvis/low back.

I'm on many different meds and still have difficulty, especially when the

weather changes.

I'm taking: celebrex, MTX, Plaquinel, Enbrel, fentynal patches, percocet,

baclofen.

Yet with all the meds, right now my body is screaming. I can't seem to take

enough pain medication. Anyone out there have something else that works for

them?

I appreciate any help~

in Cal.

[Guest guest]

Hi Shelia

Thanks for the reply

>

> PHOSPHATE *0.76 mmol/L 0.87 - 1.45 This is too low Caroline - see

> http://www.patient.co.uk/doctor/Hypophosphataemia.htm for possible causes.

I've had a look at the article and did start magnesium sprays after i got these

results (burns and itches which is a sign of deficiency) Do you have any other

suggestions?

>

HDL CHOLESTEROL *2.2 mmol/L 1.2 - 1.7 - Hypothyroidism causes high cholesterol -

I wonder whether T3 dose needs tweaking.

I am currently on 150mcg T3 - split into 3 doses. Though for ages took it all in

am and seems to make no difference? How would you suggest tweaking the dose?

> However, some T4 is needed in the brain and perhaps taking a small dose of

> L-thyroxine with your T3 might help.

I will try adding a bit of T4 - but last time this caused severe headaches, how

much would you suggest?

> FREE T3 5.5 pmol/L 3.1 - 6.8 -. I guess you stopped the T3 the day before

> you had the blood drawn for this test.

Took T3 day before none on morning of blood draw.

>

Thanks for the help,

Caroline

>

>

>

[Guest guest]

>

> Hi Shelia

>

> Thanks for the reply

Sorry forgot to put that I had asked some questions in the body of the email.

Regards

Caroline

>

> >

> > PHOSPHATE *0.76 mmol/L 0.87 - 1.45 This is too low Caroline - see

> > http://www.patient.co.uk/doctor/Hypophosphataemia.htm for possible causes.

> I've had a look at the article and did start magnesium sprays after i got

these results (burns and itches which is a sign of deficiency) Do you have any

other suggestions?

> >

> HDL CHOLESTEROL *2.2 mmol/L 1.2 - 1.7 - Hypothyroidism causes high cholesterol

- I wonder whether T3 dose needs tweaking.

> I am currently on 150mcg T3 - split into 3 doses. Though for ages took it all

in am and seems to make no difference? How would you suggest tweaking the dose?

>

> > However, some T4 is needed in the brain and perhaps taking a small dose of

> > L-thyroxine with your T3 might help.

>

> I will try adding a bit of T4 - but last time this caused severe headaches,

how much would you suggest?

>

>

> > FREE T3 5.5 pmol/L 3.1 - 6.8 -. I guess you stopped the T3 the day before

> > you had the blood drawn for this test.

>

> Took T3 day before none on morning of blood draw.

> >

>

> Thanks for the help,

>

> Caroline

> >

> >

> >

>

[Guest guest]

Sorry Chrissie, I missed your original question with going

through all of your results:

>I have been on HC and then Pred now for several months

and am just starting to wean off the pred as I feel it is time.

>Problems I am having are pain in neck & shoulders around my period (im

48)and some times as now constant pain and occasional dizziness.Can anyone

offer any advice?

Have you had your sex hormones tested (progesterone, oestrogen,

testosterone) to see whether there is an imbalance between these? There is a

discussion here about back and neck pain around the time of a period http://www.dailystrength.org/c/Chronic_Pain/forum/3512667-menstraul-cycle-neck-pain-flare

.. Have you actually tried to cut back your dose by say 10mcgs T3 to see whether

you might now be taking just a little bit too much. You can get the same

symptoms with too much thyroid hormone as you can with too little. Try the

experiment unless you have already done this and see what happens. If no

changes, then try cutting back with another 10mcgs (are you taking Cytomel or

Liothyronine, I ask because the dosage is different)

> > PHOSPHATE *0.76 mmol/L 0.87 - 1.45 This is too low Caroline - see

> > http://www.patient.co.uk/doctor/Hypophosphataemia.htm

for possible causes.

> I've had a look at the article and did start magnesium sprays after i got

these results (burns and itches which is a sign of deficiency) Do you have any

other suggestions?

This is too big a subject just recommend increasing your

phosphate level by …etc…etc…etc… but basically, you

should start high doses of vitamin D. Your doctor should be talking to you

about this. Read the following document as there is a lot of information there

that should help you http://www.chemocare.com/managing/hypophosphatemia-low-phosphate.asp

> HDL CHOLESTEROL *2.2 mmol/L 1.2 - 1.7 - Hypothyroidism causes high

cholesterol - I wonder whether T3 dose needs tweaking.

> I am currently on 150mcg T3 - split into 3 doses. Though for ages took it

all in am and seems to make no difference? How would you suggest tweaking the

dose?

I was wondering whether taking it more times a day (i.e. 4 or 5

doses) would be better for you because of your complaining that you feel occasional

dizziness and wondered whether this is caused because of the T3 peaking in the

blood a couple of hours or so after taking it. This can give temporary symptoms

of hyperthyroidism, causing sweating, dizziness, feeling 'spaced-out', possible

palpitations. Do you notice whether the dizziness comes on after a 1 to 2 hours

after taking your T3? If so, splitting the dose into four or five doses might

help, as there would be less T3 to peak in the blood.

> > However, some T4 is needed in the brain and perhaps taking a small

dose of

> > L-thyroxine with your T3 might help.

> I will try adding a bit of T4 - but last time this caused severe

headaches, how much would you suggest?

Just 25 mcgs of thyroxine. Take this an hour before food though.

Luv - Sheila

[Guest guest]

Hi Shelia

I have not had sex hormones tested. I take progesterone and it has been very

helpful but can't find a blood test for sex hormones. If you know of one please

point out, if not is salivia ok whilst on progesterone?

I've had a look at the link you suggested and am going out to get some fenimax

which has naproxen in.

Have you actually tried to cut back your dose by say 10mcgs

>> taking Cytomel or Liothyronine, I ask because the dosage is different)

>

>On T3 I take cytomel, I can try and cut back but my temps are around 98.6, bit

higher during period, and my pulse is steady around 70-80.

I'm always scared to reduce T3, but will have a go anyway.

> > > PHOSPHATE *0.76 mmol/L 0.87 - 1.45 This is too low Caroline - see

> > > http://www.patient.co.uk/doctor/Hypophosphataemia.htm for possible

> causes.

> > I've had a look at the article and did start magnesium sprays after i got

> these results (burns and itches which is a sign of deficiency) Do you have

> any other suggestions?

>

> This is too big a subject just recommend increasing your phosphate level by

> .etc.etc.etc. but basically, you should start high doses of vitamin D. Your

doctor should be talking to you about this.

Is it worth taking my results to my doctor, we don't speak because he drew blood

unexpectedly and kept ringing me up telling me I would have a heart attack. He

even got an endo to write to me? But if taking these phospate results might help

I will go back?

I used to take 3000mg vit D but stopped for the summer, I will start back on

this.

>

>

> > I was wondering whether taking it more times a day (i.e. 4 or 5 doses) would

be better for you because of your complaining that you feel occasional dizziness

and wondered whether this is caused because of the T3 peaking in the blood a

couple of hours or so after taking it. This can give temporary symptoms of

hyperthyroidism, causing sweating, dizziness, feeling 'spaced-out', possible

palpitations. Do you notice whether the dizziness comes on after a 1 to 2 hours

after taking your T3?

I don't think the dizziness is T3 related, I don't get palpatations or anything,

do sometimes get sweaty but think that's my age!

The dizziness is all the time, and was no worse when only taking t3 once first

thing. I thing it is due to neck pain but will try and monitor it to see when it

happens.

Thanks for the help

Luv

Caroline

>

[Guest guest]

>

>On T3 I take cytomel, I can try and cut back but my temps are around 98.6,

bit higher during period, and my pulse is steady around 70-80.

I'm always scared to reduce T3, but will have a go anyway.

Don't make the

mistake of being completely controlled by what your temperature readings are,

these are not the main criteria. You need to go by symptoms. If cutting back

makes you feel better, that's the way to go. On the other hand, if you find

this is not helping, then go back to the dose you are taking now - at least you

will have tried. Don't be afraid to reduce the dose. T3 has a very short half

life and you will tell pretty quickly whether it is working or not, and can

pretty quickly get back to where you were before decreasing.

> > > PHOSPHATE *0.76 mmol/L 0.87 -

1.45 This is too low Caroline - see

> > > http://www.patient.co.uk/doctor/Hypophosphataemia.htm

for possible

> causes.

> > I've had a look at the article and did start magnesium sprays after i

got

> these results (burns and itches which is a sign of deficiency) Do you have

> any other suggestions?

>

> This is too big a subject just recommend increasing your phosphate level

by

> .etc.etc.etc. but basically, you should start high doses of vitamin D.

Your doctor should be talking to you about this.

Is it worth taking my results to my doctor, we don't speak because he drew

blood unexpectedly and kept ringing me up telling me I would have a heart

attack. He even got an endo to write to me? But if taking these phospate

results might help I will go back? I used to

take 3000mg vit D but stopped for the summer, I will start back on this.

Yes, you need to talk to y our doctor about this. Let him know

(should he bring up the subject of your thyroid - that your thyroid health is

in the hands of a specialist and leave it at that). This is your entitlement.

All you need to know is his thoughts regarding your low phosphate level. Yes,

get back to your vitamin D supplement, even during summer (that hasn't been!!!)

>

> > I was wondering whether taking it more times a day (i.e. 4 or 5

doses) would be better for you because of your complaining that you feel

occasional dizziness and wondered whether this is caused because of the T3

peaking in the blood a couple of hours or so after taking it. This can give

temporary symptoms of hyperthyroidism, causing sweating, dizziness, feeling

'spaced-out', possible palpitations. Do you notice whether the dizziness comes

on after a 1 to 2 hours after taking your T3?

I don't think the dizziness is T3 related, I don't get palpatations or

anything, do sometimes get sweaty but think that's my age!

The dizziness is all the time, and was no worse when only taking t3 once first

thing. I thing it is due to neck pain but will try and monitor it to see when

it happens.

It could be that you had an earlier injury somewhere that has

caused a nerve to become pinched, that is causing both neck/shoulder pain and

dizziness. Or it could be that you might be suffering with a vestibular disorder.

Have you ever been involved in a car crash and suffered whiplash injury or some

other head injury in the past - see http://www.vestibular.org/vestibular-disorders/specific-disorders/cervicogenic-dizziness.php

How long have you been suffering with this and did you notice that there was

any one incident that brought the neck/shoulder pain on? Read also http://www.dizziness-and-balance.com/disorders/central/cervical.html

Luv - Sheila

[Guest guest]

Thanks Shelia

Sorry but I have a couple more questions.

T3 has a very short half life and you will tell pretty quickly whether it is

working or not, and can pretty quickly get back to where you were before

decreasing.

I react strangly to T3, I usually don't feel any effect for several weeks. When

I have run out in the past I will wean down and then off T3 and it will be a

couple of weeks before symptoms start to come back, such as increase in pain,

cold, cracked skin etc. I have reduced by 25mcg today and will see if I notice

any difference. Do you have any idea why I take so long to react to t3?

How long have you been suffering with this and did you notice that there was

any one incident that brought the neck/shoulder pain

http://www.dizziness-and-balance.com/disorders/central/cervical.html

I have read the article and yes I was involved in a car accident in 1988, I

suffered whiplash, and a head injury. The whiplash was not treated straight away

as they were more concerned with my head injury. I was paralised down my left

side. This is mostly gone and I often need an adjustment with my neck, but can

usually tell the difference between the fibro pain and mechanical pain.

Thanks again

Caroline>