NeuroTalk Support Groups - need some encouragement, I guess

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - need some encouragement, I guess (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/31976-encouragement-guess.html)

need some encouragement, I guess

Hi everyone, I've missed you... but things here have been tough lately.

My aids has been giving me a hard time recently. I have no choice now but to start meds, regardless of how much worse the side effects make my rsd. I have put this off longer than I should have.

I have now developed what they call "wasting", where the body consumes muscle as well as fat reserves. It's not that I have run out of fat reserves completely, it's something that can happen regardless of your weight.

The only thing that helps with wasting is the use of human growth hormones, a med called Serostim. I will have to inject myself daily, yuck.

There are many serious side effects to this medicine. The major one is that over 1/3 of people who use it have musculoskeletal pain as well as all sorts of things like arthralgia, myalgia, and peripheral neuropathy. There are also edema and "tissue turgor", which is another type of swelling of the wrists and ankles. A "double-whammy", so to say. It will increase the number of and severity of my migraines, too. Not to mention that it can cause the development of Diabetes. I have tested "borderline" for years, I am worried that this will send me over that line.

Needless to say, I am scared stiff. I don't want to take ANY these meds, let alone all of them!!

Keep your fingers crossed, pray for me, whatever you can. I think I'm going to need it. :eek:

:hug:

Rogue

Hi,
I am so sorry about your Aids.
If your doctor says that you need medications take them. They may cause side effects but it is better to try and get your Aids under control.
I am sorry that you are going to have to inject yourself daily, that is awful ((hugs))
Try to keep calm, I know that it will be hard but eorking yourself up into a state does not help you and your illnesses.
Let us know what you decide to do
You are in my thoughts
Take care
Love Alison
_x_

Ali is right. The more stressed you get the worse it will make you feel and escalate your symptoms.

I am so sorry that you are going through this. If these meds will help you start feeling better and make you get stronger then don't look at is as a negative thing but as a positive thing.

I hope you start feeling better and I am glad to see you back.

Ada

Hi Rogue,

I wish I could do more than offer prayers and an ear if you feel like talking more about it. I can't, but you do have my prayers, and the offer stands...Vic

Hi Rogue..

I had been wondering where you were, hopeing you were away cause you were feeling better not worse, I am so sory things are escalating for you to this point ((hugs)) bud, big soft ones.. we are here for you.

Sandra

Hi Rogue,
I am so sorry to hear about all the problems, but everybody is right you need to try and stay relaxed as possible. The docs know what they are doing. I am praying for you. I hope for the best possible outcome for you. Remember the key word is RELAX. Take care.

Tracy

Hey Rogue,
I like your screen name. Hope things go well for you with the treatments. Only you can decide what is best for you. I lived in Spokane when I was a little guy, my mom went to Gonzaga. Lots of fond memories of that area. What sticks out in my mind is how big the Grasshoppers were back then in the summer. And very hot! I live in Oregon now. Can't beat it for the climate. Let us know how things work out for you with the treatments.
Stephen
AKA Condor

Hi Rogue!
You have been missed! I too am very sorry about what your going through. Just do as the doctor says. take all the meds as prescribed. I will say prayers for you!! (((Hugs Rogue))) Love, Desi

:(

Sorry you are having such a horrible time.
With a bit of luck you may escape many of the side effects and just get everything that is good about the drug.
I have seen many people who have taken Growth Hormones without suffering anything untoward---I sure hope that will be you too.
Thinking of you and sending you luck
Tayla:hug:

Rogue,

We have missed you so much. I'm so sorry things are getting worse for you. Please know that we care so very much for you. I know it is really hard for you now, but I also know that you are a very strong woman and you will do everything you can to stay on top of this. On the days you want to rant and rave please know that we are here for you. if you want you can PM me. I'm a great listener and sometimes that will help. Just know that you are loved.

Gentle hugs

Mary
:hug: