My body the science experiment

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Monty's Mom
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Date Joined Aug 2010
Total Posts : 664
   Posted 8/17/2011 12:43 PM (GMT -6)   
I can't tell you the number of medications, therapies, herbs, stretches, exercises, and everything else under the sun that I have tried for relief. There are so many that I have lost count. Years of meds and pain will do that to memory, won't it?

So I had my Lupron injection Thursday. The first few days were ok, but the pain increased just like the nurse warned me. It works by shutting my hormones down but needs time to build in my body. I began having muscle aches, then cramps, and now have joint pain and muscle aches, cramps, spasms, and pain. I forget words for simple things I should know, forgot a very important wedding appointment that we have had for weeks and I had been preparing for.

I have dizziness so severe that I sway when I get up. My appetite is completely gone, food smells, looks, and tastes bad. My hands and feet tingle, and I faint more now than I did before the shot. Mood swings are so bad that I don't feel like myself, thinking things that I would never have thought before. To top it all off, my hair is starting to fall out in clumps.

My surgeon is supposed to call me this afternoon to discuss the side effects, if that is what they are. I took all the information out there, realizing that many people have success with Lupron and little side effects, to make the decision of this or surgery before the wedding. I tried it, using my body as a guinea pig in an attempt to make life better, and now I don't even recognize myself. All for a slim chance of pain relief to avoid surgery.

What have I done to myself? I don't look forward to hearing the doctor say that these are normal side effects. He doesn't have to live this way, so desperate for relief that you would poison yourself just to try to stop the pain.

Why do we do this to our bodies? Is there no better way to make it through the pain of each day that to take meds, then take more meds for those meds, and on and on?

I am too tired to continue and my fingers are starting to lock up. How do I finish my wedding shawl this way?

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2011 1:34 PM (GMT -6)   
Hi MM,

I'm sorry that you are having such difficulty. I understand where you are with this and how it makes you feel. I think that's why I came back to speak with others who understand and can relate to where we are in our own pain cycles.

All my best.
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

Betsey Ross
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Date Joined Mar 2011
Total Posts : 1056
   Posted 8/17/2011 3:35 PM (GMT -6)   
I am so sorry that you feel the way you do. I am sending you warm soft hugs.

Try to stay strong and I will pray for you.

crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

Veteran Member

Date Joined Mar 2011
Total Posts : 816
   Posted 8/17/2011 8:32 PM (GMT -6)   
Hi Montysmom, stop beating yourself up, you took a chance, thats what we do.  I have this useless stimulator in my back in the hopes that it would allow me to not take so many pain meds, and possibly make it go away.  I know the real me, the brain me, said it cant be that good its almost to good to be true.  My other me, said do it, any chance to not feel like this is worth it.
So thats what we do, we always hope, and I will keep on hoping, I will not give up my hope.
Take care of yourself, and hoping you feel better soon.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Regular Member

Date Joined Jul 2011
Total Posts : 101
   Posted 8/18/2011 2:24 AM (GMT -6)   
Oh MM....I am so sorry.  I replied to one of your previous posts about the Lupron injection you were considering...and I pretty much discussed those same side effects that you are experiencing now.  I feel your pain.  I kept asking myself the same thing..."why did I do this to myself?"  But just like NiNi/Kathy said...our pain makes us try just about anything in order to feel better,  so don't beat yourself up.  Many women have great results with minimal side effects, so it's understandable why you chose to get the injection.  So did I, but unfortunately I believe those side effects outweighed the benefit.  I felt AWFUL...same side effects that you I wasn't even ME.  I felt like a monster had crawled inside my body and took over.  Anyway, the thing I really want you to realize is this:  THIS TOO SHALL PASS.  You will feel better, but for me it took about 3 months for the Lupron to wear off.  I understand about the wedding coming up...and hopefully you will feel better by then.  Bless your heart, I feel like giving you a big hug. (((()))))  Talk to your doctor about how you are feeling and maybe he can prescribe some meds to calm all everything down.  Someone had told me about Estroven, which is an otc natural soy supplement.  I tried it but I don't think it worked for me.  Maybe it will for you.  Of course, if you got on a prescription HRT, like Premarin, I think that would defeat the purpose of Lupron.  I hope you start to feel better soon.  Just remember THIS TOO SHALL PASS.
DDD, 3 bulging lumbar discs, bone spurs, facet joint arthrosis/sclerosis, osteoarthritis

Veteran Member

Date Joined Mar 2011
Total Posts : 1276
   Posted 8/18/2011 3:18 AM (GMT -6)   
MM, I'm sorry that you're having such a hard time right now. I can't imagine what you're going through, but I'm here with you in empathy and in thought.

CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Monty's Mom
Veteran Member

Date Joined Aug 2010
Total Posts : 664
   Posted 8/18/2011 7:46 AM (GMT -6)   
Mysti, I knew the risks, but was desperate for any improvement this close to the wedding we planned for 2 years for. I just kept praying that the side effects would be minimal. It does feel like a monster has crawled inside me. I don't see myself in this weepy, angry woman who has no interest in the world.

The doctor called me back, said that he usually doesn't answer calls from his patients on Lupron before they have had their 2nd shot, but because he respects me more with my severe issues, he didn't let the nurses field this one. He has said many times before that I am his favorite challenge, because there are so many allergies and health problems. He also blew smoke up my butt basically saying that it is a safe drug that can cause major side effects because it takes all the hormones that are steroids out of the body. He reminded me that when my body adjusts I will feel better and just to try to relax as much as possible. He did prescribe progesterone for add back therapy to combat the hair loss and muscle fatigue, it will also help with bone loss.

I feel so bad for my fiance. He wanted to wait 2 years so I would feel better. We got engaged right after a long hospital stay that included emergency surgery, PICC line vancomycin, and later months of wound vac therapy. He wanted me to have time to heal, to feel better, and look at the mess I have made of that, 3 more surgeries, countless meds, allergies, and lots of misery for him. I shouldn't say that because at the end of the day, he comes home to me, helps without complaint, and loves me regardless.

It is disappointing when a therapy that carried so much hope is not the answer. That on its own is a sort of side effect, disappointment.

Thank you all for your hugs, listening, and being supportive. It makes a world of difference to be able to come here for support and understanding. Thank you all for not saying I told you so on top of it.


Forum Moderator

Date Joined Feb 2003
Total Posts : 16779
   Posted 8/20/2011 5:38 PM (GMT -6)   
Mindy, I hate to hear that things are going so rough right now. Don't kick yourself for trying the Lupron. You know most of us will try just about anything if we think it may give us some relief. I think that is pure human nature when we start making those kind of decisions.

I know things are really crazy for you right now, but who knows, things may level out some what by the time your wedding day rolls around. Try to think of it that way. Kind of like you are getting all of the nasty bugs worked out in the beginning so you can have some smooth sailing ahead. I know, right now you feel so bad its hard to even have one tiny positive thought, but some how you have to, you have the big day coming up soon.

You are right sometimes we do feel like we are lab rats with these crazy meds we take. Hang in there its going to get better.
Moderator Chronic Pain Forum

Veteran Member

Date Joined Apr 2010
Total Posts : 2265
   Posted 8/20/2011 10:40 PM (GMT -6)   
Hi Mindy I'm sorry that you're going thru this rough time. Hopefully the pregesterone will help with some of the symptoms. Bless your heart. I was hoping that you just might be starting to feel just a bit better. Of course, I don't know anything about Lupron nor the pain that you were going thru before the injection.

Try to think positive. Like Straydog said, maybe you are getting all the kinks out now, and will feel better by the time the big day gets here.

You take care.

love and hugs
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 8/22/2011 11:51 PM (GMT -6)   
I had really hoped the Lupron would buy you time. I am sorry this is happening to you. Endometriosis stinks.
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