I am a newbie getting Botox injections

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noklu
Regular Member


Date Joined Jun 2009
Total Posts : 110
   Posted 6/18/2009 11:52 PM (GMT -7)   
I have gone from a lurker to a poster, but technically a newbie.
 
I am 51, have had fibro since a teenager, but diagnosed 5 five yrs ago.  I run the gamut of ailments like the rest of you (us), compounded by needing both of my hips replaced due to avascular necrosis, caused by Prednisone.
 
I had another post earlier ( with 3 responses ), but am hoping someone out there in fibroland has had Botox injections for the pain. 
My orthopedic sent me to a PMR Dr (physical medicine & rehabilitation).  The best thing he thought would be the Botox injections.  When they didn't work as well as thought, he recommended steroid injections in my fact joints (I refuse to cause more damage to my body with steroids), or burning my nerve endings.  As pleasant as that sounded, he lost me at very painfull, sedated, might not last, etc..So I tried the Botox again, and then I just had them yet again, at 3 mo intervals.  It takes about 2 weeks for the shocking pain to go away and since I have 5 shots in my neck, I need to wear one of those "fashionable" collars.
 
I have a total of 13 injections, 5 in my neck, 1 in ea shoulder, 1 in ea shoulder blade, 1 in ea hip and 1 in ea butt.  I didn't think they were doing much for me, but after the last 2 months I realized a lot of my pain was coming back.  Thats why I had it done for 3rd time. 
 
So, why am I telling you all this?  It's not that I'm trying to bore you, but because I am in pain, and I want to know if anyone else has tried this?  Is it really worth it?  Fortunately, I pay big $ to have good insurance and they cover the cost, which is about $10,000.  Every three months!  I don't know if they will keep paying, and if so, forever?
 
Anyway, I would like to hear from you all.  I am told there are no long term effects, however, I wasn't told by one of my other 3 drs that all prescribed Prednisone, that it would have lasting effects. Huh.  I am not a skeptic.  I want to believe this is the new wave of pain relief, which I might add, I still need all my other pain meds - oxycodone, vicadin, flexeril, Lyrica etc.
 
I'm rattaling on.  This sure beets lying in bed watching the time pass (I know I was supposed to take the clock out of my bedroom, but I need to know what time it is that I am not falling asleep).
 
Do people actually read thes long ones?  Can somebody help me?
 
Thanks for reading this.  If I have typos, I'm sorry.  I am sleepless in Minnesota. 
noklu
 
anxiety, avascular necrosis, costochondritis, depression, cfs, fibro, gerd, thyroid, uc 
 
in trying times, don't quit trying          
 


Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 6/19/2009 1:45 AM (GMT -7)   
Noklu, I am so glad I found that you posted something. I have never tried Botox. I can barely handle the shots I do get. I only get or ask out of neccesity for my health do I get them. *shutters* 
 
I am only 40 years old and have started to feel like I'm an 80 year old woman. I was only just diagnosed with Fibro 2 days before the New Year started. So December 30th, 2008. I feel miserable and my doctor is acting like my pain is no big deal. I'm exhausted just to keep going every day but I have to I have a 17 year old to keep raising.
 
I am also going to a Ruemotologist.(sp) this month thank goodness. I have to write everything down so I remember to tell her when I go. She is also the one who put me on Prednisone that I only took 3 5mg of and my blood sugar was over 300 which is not good. I told the nurse to give her my message about the Prednisone. 
 
Some days I wish that I could find good doctors and specialists and such.
 
HARA - Fibro, Diabetes2, Gerd, Sleep Apnea, Asthma, Tendonitis, Carpal tunnel syndrome, Depression, Anxiety

noklu
Regular Member


Date Joined Jun 2009
Total Posts : 110
   Posted 6/19/2009 8:50 AM (GMT -7)   
Hi Hara,

I hope your rhuemy does something for you. I have one and she didn't do much for me. I was surprised when she suggested that I get a colonoscopy. I had no idea the colon could cause so many problems. I already knew I had colitis. Thats one of the times I needed the predinisone, to get that under control.

I am very blessed with my regular dr. now. He is very caring, really listens to me, and he has a great sense of humor. He prescribes all my meds except for the botox, that is from my pmr dr. He is only 40, so he should be around for awhile.

Having a great dr. helps a lot. If you think she can't help you, keep looking.

Good Luck
noklu
 
anxiety, avascular necrosis, costochondritis, depression, cfs, fibro, gerd, thyroid, uc 
 
in trying times, don't quit trying          
 


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 6/19/2009 9:59 AM (GMT -7)   

Noklu,

Yes, I have gotten botox injections.  But I don't get them for fibro, they are for the myofascial pain.  the muscles in my neck and shoulders and down my front and back about 4 inches are continually in spasm.  I am not sure if they help or not because initially the pain from the shots is so intense I cannot function for a few days.  The it subsides to horrible but I can get out of bed and stays that way for about a week.  After that I don't know if the pain is better than before the shots or just finally stops hurting from the shots so it feels better . . .

I get about 8 or 9 shots with $800 worth of botox in the back of my neck and shoulders and I never have to wear a collar.  But I do have to sit in the waiting room to make sure I don't pass out or something.    

My doc wants to give me a nerve block for the pain in my tailbone. My neck has been hurting a lot more lately, too.  I am working furiously on getting my master's thesis done and do not want to take the time off being in pain, so I have not gone back for more shots. 

Best,

Sue


MrsCavbar
Regular Member


Date Joined Mar 2009
Total Posts : 285
   Posted 6/19/2009 10:54 AM (GMT -7)   
Noklu,

I've not had botox injections, and the last steriod injections I had were when I was pregnant, about 5 yrs ago. I did go on a round of oral steriods, but due to a compromised immune system and the fact that steriods also reduce the ability to fight infections, I was hospitalized for wide spread infections, LOL let's just say, if it could get infected, it did. And fortunately, the steriods were stopped, though at the time, I was not DX with fibro, just severe costocondritis and arthritis.
Unfortunately, my dr is one of those that thinks if I sleep well and am active when awake, I won't hurt and thus doesn't give me anything for pain and has told me to stop taking OTC meds for the pain, saying I was going to damage my liver and kidneys.

I wish I could help you more, the only thing I've found in my research is that they are currently working on a medication to reduce the body's ability to produce the pain horomone, but thus far nothing promising has been found. Though I do know that a normal person's pain horomone level is like 7-9, while a person with fibro's pain horomones average anywhere from 16-79, the 79 being almost compairable to a burn patient's pain horomone levels. Unfortunately, the only way to check a patients pain horomone levels is through a spinal tap, which most doctor's don't do, due to cost and the amount of pain it causes, so they just rule out all other possibilities. Personally, I'd rather they rule out all other possibilities AND do the spinal tap on me, as then to have a lab test, a peice of information to prove that no, I'm not just nuts, it's not in my head, my body just hates me for some odd reason, at least it feels that way sometimes.
Honestly, I don't think there will be a massive attempt to treat the cause or find the cause, until the medical establishment stops bickering whether or not it's a real condition. At this point, I can say, I don't care if it's real or not, just frickin fix it already.

I wish there was more I could say, more I could do to make you and the rest of us feel better, but alas the only thing I can say is I'm so sorry that you must deal with this, that anyone must deal with this so, best of luck, and soft warm *hugs*
Lola

Any idiot can face a crisis - it's day to day living that wears you out.
Anton Chekhov

My train of thought derailed long ago, now I take the bus, few more stops, but I eventually get there.

FM, costocontritis, wide spread arthritis, fibroid tumors, PTSD, 2 heart attacks at 22, PID


Flexeril 30mg, Celexa 50mg, Despiramine 50mg, Acetometaphen 500mg, Calming Sleep herbal suppliment, ActivOn topical pain relief, Melatonin 300mg, B-complex, Diclofenac 75mg, tramadol 50mg


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 6/19/2009 11:02 AM (GMT -7)   
There seems to be some controversy whether they work or not. With what you girls are saying about the pain of getting them I'm not sure if it would be worth it or not, IMHO.
 
I had steroid shots in my right hand for arthritis for a few years and I think they did more damage than good. I also had some given in the behind for all over arthritis pain and I have dimples everywhere I had the shots from the tissue being damaged I guess. I didn't know at the time this could happen.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 6/19/2009 8:39 PM (GMT -7)   
noklu said...
Hi Hara,

I hope your rhuemy does something for you. I have one and she didn't do much for me. I was surprised when she suggested that I get a colonoscopy. I had no idea the colon could cause so many problems. I already knew I had colitis. Thats one of the times I needed the predinisone, to get that under control.

I am very blessed with my regular dr. now. He is very caring, really listens to me, and he has a great sense of humor. He prescribes all my meds except for the botox, that is from my pmr dr. He is only 40, so he should be around for awhile.

Having a great dr. helps a lot. If you think she can't help you, keep looking.

Good Luck

Hara says: I hope your doctor doesn't move on you or go out of business. I had a couple good dr's, one move and the other took a job closer to her home. Now I have crap for a dr. I can't wait til I can find a new doctor.


noklu
Regular Member


Date Joined Jun 2009
Total Posts : 110
   Posted 6/19/2009 9:17 PM (GMT -7)   
Thanks for all the hugs. I guess I'll just take it 3 months at a time, and assess the situation then. I really like all the support I find here. I do get the FMA and receive the FMAware magazine. But this forum takes the cake.

By the by, I have been taking Lyrica for about 4 years, before it was approved for fibro. My Orthopedic put me on it to see if it would work for me. I would have to say thanks to him for that.

Keep the sugar coming.
noklu
 
anxiety, avascular necrosis, costochondritis, depression, cfs, hypothyroidism, fibro, gerd, thyroid, uc 
 
in trying times, don't quit trying          
 


noklu
Regular Member


Date Joined Jun 2009
Total Posts : 110
   Posted 6/19/2009 9:18 PM (GMT -7)   
Marlee,

At the risk of sounding ignorant, what is Gastroparesis?
noklu
 
anxiety, avascular necrosis, costochondritis, depression, cfs, hypothyroidism, fibro, gerd, thyroid, uc 
 
in trying times, don't quit trying          
 

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