Re: HELP! I CAN'T TAKE THIS PAIN!!!!

[Guest guest]

..

Hi Bekkah,

hope today is/was better than yesterday. It's awful when it feels like

there isn't anything you can do for your pain.

Reading your post made me wonder about your diagnosis. Do you have one?

(Sorry, I can't remember). If not, have you and your medical team

considered one of the connective tissue disorders? You sound like a lot of

people I know of with those. They often get overlooked because not all

medics know about them.

I have Ehlers-Danlos syndrome hypermobile type, used to be very active,

flexible and mobile. I find heat, pilates, hydrotherapy and deep tissue

massage helpful. When nothing seems to work I have a warm bath (if I can

get in) or a warm shower; both with some really nice cosmetics. They might

not do much for the pain, but I feel good about life which is the most

important thing to me. Just a thought, I'm not a practitioner - just a

patient.

Again, hope you're having a better day,

Siel

[Guest guest]

,

Today wasn't much better, but I tried to lay low and made sure I took

my medications on the minute on time. I am on as much as I can take

and I am still at a 9/10. I don't know what to do.... But this

trend is continuing... My pain is bad always, but it is worst at

night!

Don't worry about the diagnosis thing, there are too many of us that

have too similar of problems to keep everyone's diagnoses

straight... I ahve sever disgnoses which no two doctors can agree

on. Scheurrrmann's Disease. Moderate Arthritis T7-T12. Mild

Arthritis L4-L5 and L5-S1....I have been told it is all in my

head... My symptons are these... I have moderate pain in my mid back

that wraps around my rib cage making it extra painful if I sneeze,

cough, or just take a deep breath... I also have low back apin which

is moderate too, but it sends this firey pain down my leg which is

unbearable! I got a copy of my medical reports today and I am not

seeing any connective tissue mentionings, but I will ask. What type

of doctors generally knwo best about connective tissue disorders?

I too used to be extremely active, mobile, flexible ( I could do the

splits and pull my front leg to my forhead). Heat helps me too.

Right now I am having fundingissues with insurance companies about

paying for hydro therapy and/or massage... One of my friends is in

massage school and nneds to log so many hours, but he is such a good

friend he does this " relaxing " massage which helps, but he is afraid

to go deep because it might hurt me... The bath thing I use a lot,

but I have the problem a lot of once I am in, I can't get out! The

shower thing doesn't really help much.

I think we all realize that although none, or very few of us are

actual practitioners, we all seem to know and empathize more with

each other that our doctors do with us. Boards like this prove to me

a degree means not a lot when is comes to chronic conditions!

Thanks for the idea:

Bekkah

[Guest guest]

Bekkah>>>One of my friends is in massage school and nneds to log so many

hours, but he is such a good

friend he does this " relaxing " massage which helps, but he is afraid to go

deep because it might hurt me... The bath thing I use a lot, but I have

the problem a lot of once I am in, I can't get out! The shower thing

doesn't really help much.>>>

Bekkah,

I am sorry you have so much pain and you are not getting relief from the

things you have tried. I believe you said you are not a canidate for a

SCStimulator?? Well how about an intrathecal pain pump? I had a trial for

one in July and got about 60% pain relief and that was at a low rate of

meds. I am having the permanent one implanted on Oct. 20th and I am scared

but excited to get better pain control!!! I will start with the same amount

of meds in the pump that I had in the hospital and half my oral meds. As we

increase the pump meds, we will lower my oral meds but I will probably

always need some break through meds.

Just a thought for you and if you want to read more about it Medtronics also

makes the pumps www.medtronics .

Hope you find something that works and hope this helped some.

Take care,

Ann

[Guest guest]

Ann

I am not yet a candidate for the intrathecal pain pump, because they

haven't exhausted all options... I have no clue what is left, but

they say there is more to try. Neurostim/TENS all cause severe

spasms in my back, so unless I can use it on my abs, which with the

Neuro stim you can't just move it around... Plus right now with my

constipation, I can't use things on my abs or it makes my tummy feel

worse...

I am pushing for the pain pump, bacause after nearly 30 months, they

haven't gotten it right yet, it is about time!

Thanks for the ideas,

Blessed Be,

Bekkah

[Guest guest]

<<< Neurostim/TENS all cause severe spasms in my back, so unless I can use

it on my abs, which with the

Neuro stim you can't just move it around... >>>

Bekkah,

I understand what you are saying about not being able to move the stimulator

around BUT you can (or at least I can) adjust it so you feel the stimulation

in different places. Like the other day I was having a bad spasm in my back

and I adjusted my stimulation so I got the highest stim right at that spot

and it helped. You really do have many options with the stimulators now and

can do lots of adjustments on your own.

Also as far as your constipation....have you tried Miralax?

Ann