my 1 week of feeling good is now offically over

Diseases & Conditions Rheumatoid Arthritis
1
well i had my steriod shot a little over 1 week ago. i felt much better from it, i had eneregy, i didnt sleep all day, and my pain was significantly down. it was nice while i had it but now its over.
back to cant waking up, back to pain levels high, back to shear exhaustion. i was hoping for 2 weeks of relief but i was wrong.
i had begun to get my sh-t together. i lost 12 pounds, was doing more and feeling much better. its all gone back to square one......i am very sad today from this all. i dont want to live like this anymore but not going to off myself owed to pain though, i have my son which is the only reason why i bother to stick around, were it not for him i would have checked out and gone to the big florida in the sky.
 this is awful sad sad sad sad sad

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!

2
Hey Missie, how you doing? Hang in there, I know it seems like there is no hope sometimes, but there is, I promise. We just gotta find out what is right for you. How old is your son? Are you on any meds for your pain other than the steriod shots? I know we've talked about this before, but my memory isn't what it was... Take it easy, second by second if need be, and if you ever need me, I'm just a mouse click away... feel free to email me any time. Duck

Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots

3
hi ducky i am on norco 10/325 3 x's day more or less as needed, when i had my shot, i faded back with the norco since i didnt need it other than low dosage to keep from going through wd's.
 
i am on xanax .50mg for sezuires and aniexty. did the pred thing w/ shot, was on provigil for wakefulness which helped me for 2 weeks then i got bad creeping willies from it-jumpy and aneixty so i was chasing this with more xanax, only good thing was that it curbed my appetiete so i lost 12 pounds which is good as that gave me more energy also.
now i am an eating machine from the pred and insomina.
but i had insomina from the provigil also, it gave me skin blisters too! my skin is already dry the provigil made it much worse. so i am off this now.
what to do what to do?
dunno now maybe more shots?
for 1 week i felt the best in years. now back to square one confused

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!

Post Edited (missie1227) : 4/14/2006 1:52:31 PM (GMT-6)

4
Is you rheumy going to put you on Enbrel or Humira? You have PA right? Sounds like, if you can tolerate it, you need to go on one of those. I think it would cut down a lot on all the meds you take. I used to take a bunch, now with the Enbrel, I only take pain meds for break-through pain. Have you talked about it with him/her? Are you doing any better coping wise?

Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots

5
Missie
I am sorry you are having such a rough time. I know sometimes it seems that our whole life is nothing more than our pain. It is so easy to forget that we are so much more. You are not just a person in constant pain, you are a mom and a friend to many like me. I agree with Ducky. Go talk to your rhuemy and see what you options are. For sleep there are some things they can gove you that may help you and that alone should help how you feel. I am an zanaflex (12mg at bed time) to help me sleep and it works well for that and I think it also helps with my pain levels. Let us know how you are doing and know I am still praying for you.

Mark

We make a living by what we get; we make a life by what we give.
Sir Winston Churchil
 
A cheerful heart is good medicine,
but a crushed spirit dries up the bones.
Proverbs 17:22

6
thanks gang- i am so tired of being a whiner so i faded back for a while from the board as i felt like i was complaining to much.....now i am back to same old same old.
i am scared to try humira. my rhuemy wants me on it, i am not ready to do it as i am fearful of getting one of those dreaded side effects.

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!

7

Missie,

How are you doing today?  I'm sorry to hear that you're having so much pain.  Your last post said that your rheumy wants you to try humira, but you're scared of the side effects.  I can tell you that I was scared of the side effects of tnf-inhibitors too, but I took humira for 3 months with nothing, except a bit more bruising than normal.  I'm currently taking Enbrel, and I don't even have the bruising with that.  The severe side effects from those drugs are pretty rare, but the pharmaceutical companies have to legally list them.  The great thing about trying a new drug is that you have the ultimate control over whether you take it or not.  I'm always a bit nervous before I take a new drug, but I realize that if I don't like it, I don't need to ever take it again.  Please consider trying the humira--it has been a miracle drug for many.  I hope you feel better soon.

Elcamino

8
sad  oh missie, i am so sorry.  one thing is for sure...we all feel this way at one time or another (or many times that is).
just a thought:  how about seriously talking about the Humira w/ you rheummy and should you do it....have your first injection at the doctor's office!  i am POSITIVE that you can. you would be supervised and you would have medical professionals around you should anything happen since you are worried about an allergic reaction.  i think that is a good idea.
 
for now, even if you recieve a pred shot every week it could be very beneficial to you now. would at least control the pain/inflammation until it settles down some.
 
have you spoken to an M.D. about your concerns?
 
you take care,
 
erin

Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

9
Missie,
Steroid shots and pills are great for short term relief, but not a long term solution. As far as anyone knows currently, steroids are much worse for you then the biologics like Enbrel.

I must admit, when you used the word "fear", it bothers me. If you are feeling that bad (and if you are not) you can't let fear be a part of your decision process, ever. Look at the information available, weigh the options against your current situation, and make a decision ... and don't look back. It may not be the right decision, but as my father says, "now you've ruled one decision out".

Indecision based on anything (including fear) will get you nowhere (and I fear, plays into the hands of our gov't).

"Life is a daring adventure or nothing at all ... Helen Keller" ... Craig
10
Missie,
How are you doing???
11
i am exhausted and have gained all the weight  back that i lost. i am not happy. be back later on guys when i can say something positive

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!

12
hey there missie,
 
when things get bad...boy do they get bad.  i hear your difficult time right now.  but just know that..."this too shall pass".  cliche' yes, but it's what we have to hold on to.
treat yourself well okay.  it's the best medicine sometimes.  whether it be a bath, a laugh, a good film, a good cry, a prayer or some meditation.  they're just as important to getting alright again as much as anything.
 
take care, take it easy.
{{{{{ big hug }}}}}}
erin

Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

13

thanks guys.....i have alot  on my plate right now. my ex- m-i-l is dying and my son (21) left college to go to be by her bedside at  his uncles's home in NJ. she doesnt want to die in a hospital so they are going to let her pass away in the uncles's home i guess as peacably as they can. she is in end stage cancer and was given only 6 mos to live and that was in dec.

she is fading fast i understand from my son, who is at her bedside ( taking off from college) and frankly i am upset for my son, as when she goes he will no longer have a grand ma anymore. although i didnt get along with her, i always fostered a good rapport for my son to keep up with her and didnt personally hold a grudge against her.

i went to go to see my cousin who i have not seen in more than 25 yrs who was visiting fl from ny a few days ago. we had a nice reunion and were sad to have let so much time go by inbetween us.( family fights from her mom and my mom fostered this separetion)

i did not tolerate the drive very well ( 2 hrs away) and ended up staying in bed all day today from sheer exhaustion also.

i dont understand why i can not do anything anymore and i feel like a very old person inside. something is sapping my strenght and energy i feel, i cant explain it.

 i was supposed to have a nuclear bone scan test where they shoot you full of radioactive dye then tell you to drink lots of water, then come back 3 hours later to put you through a machine to measure the bone density afterwards.

i couldnt take the test b/c the place was 40 miles away and i was too tired to drive it from the drive home from yesterday from seeeing my cousin.

i literally slept all day long and could not get out of bed.

i have to re-schedule the test some place closer to home and asked why the person who told me to take the test didnt tell me where it was located or give me a choice to have it done as  an out patient basis at a nearby hosptial instead of making me drive 40 miles one way, get an injection, go home drink lots of water then come back to be scanned.

i have 3 hospitals down the road from where i live that i could get to in minutes to have this done. the woman told me b/c i didnt keep my appt she was going to have to charge me for the injection since she ordered it already. i asked her why she didnt tell me where she was located when she called to confirm the appt and give me directions beforehand.

oh well i am done fighting with people. i dont know how much this test is going to tell me anyways....i have already had many xrays which say the same thing dont they?

all i know is that from last year to this year i have notice a decline in my energy and physical health and well being. and i dont understand why. i feel like i am getting ready to see people who i have not seen in a long time to say goodbye to them.

 

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!

14

hey missie, me again:

this sounds like a real low point. pretty hard to get through?  just know that everything mental and emotional also is equally physical too.  should it be needed, please seek someone to speak to, a Dr. who can assist you through a particularly rough patch.

family is draining! driving?....forget it!  when i get home on a tuesday morning, i've only been in the car for 1 hour and i swear, the commute sets me off into a flare like mode.  is it the sitting? who knows, but it is taxing. even if ya don't do the driving!

wish this didn't need 24 hour a day 365 day a year mantainance, but it does.  we constantly are adapting to changes and hardships. some not so easy.

 

when are you going for the bone scan?

take care missie, and know that you are valued and a good person.

sincerely,

erin

Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

15
You are in a tough situation Missie, sorry.
Everything works out, but sometimes it takes a little longer. I hope you can remain sane and reasonably happy while it is working out.
... Craig
16
thanks guys for your support as  always i really appreciate coming to this board and having you all to listen to me whine.
i am trying to get into a good place emotionally with all this goings on.
i will tell you all more when i know more myself--thanks to all who responded

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!