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| | From:  Tami62 (Original Message) | Sent: 6/1/2008 7:57 PM |
It's that time again for everyone to check in. I am so happy to see that we are constantly growing as a group. We have lots of new members and I want everyone to join me in saying hello and letting them know that you are still here for them to talk to. I also want to remind everyone that fathers day is coming up so plan ahead to eliminate any stress. Less stress means less pain.
I also want to share a file for you to attach to your emails so that you can help spread the word about RSD to others. I am going to send out an email to everyone with the file attachment so you can save it to your computers. It is an RSD Awareness Ribbon. jpeg. You can copy and paste it into your email signature options. You can see what it looks like on the new picture uploaded to my pics for the group. (lower right side of group pages.)
Spread the word.
Tami62
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| | | From: ladojo | Sent: 6/6/2008 4:00 PM |
Hey... I'm doing so much better... It's June... the sunshine
always helps me, but I discovered something that no Dr.
told me about... vitamin D... 1000 units a day. After taking
a 1000 units a day for a week I woke up feeling so much
better. I had been is so much pain, my Dr. had upped my
morphine sul from 30 to 60 a day. After the vitamin D, I had
to stay on the 30... 60 was wayyyyy...to much!
Ok, enough of that... I'm still here, and playing in the dirt. hehe
God bless all of us! Love and hugs!
ladonna |
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Well here I am still kicking. I guess ,,,, tho with alot of tears. I am happy,,,, really really hurt. Are moved and back online. WAhoooo,,, the sores are nearly cleared up. and enjoying the ac. what a blessing. And the place is super great. rooms are huge,,, tho one of my bedrooms looks like hospital room with all the medical supplys in it.. darn!!!!! Well,,,, movers were pretty stupid,,,, driving off with alot of stuff on the truck ,,, not wanting the pay they agreed too do for... and denying it all. One thing that saved me n hurt me worse is that medical supplys that been waiting on all month of may for the approval on insurance to give was just delivered Friday UPS,,, n taken Sunday nite during the move... what a mess.. insurance n medical company is working with this all. Having the realization that party lite collections are not replaceable is hard too digest... Really hard one. I really like party lite. Gave a new freshness too room with them setting around. O well,,, lot of stuff is gone with this also.. O well. Brother n family are no better neither. Like moving out of hell to get away from family!!!!! I here n kicking. huggzzz all enjoying the posting n new memebers. Hoping that new memebers will join in let us get too know them. Annie |
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Hi Lad lady...I was just reading you're post.....I had something similar happen to me in the last couple of week's......My reg Dr sent me to a reumi guy>?....who did blood....He thinks I have vasculitis....hahahahahahahaaa...(shrugs)....whatever...I told him I'll be as cooperative as possible....anyway....he sent me a letter with a script in it for 50,000 units of vit D....said I was way low....supposed to take it once a week for 4 weeks....and after the second week...I have less pain.....I guess that goes along with the territory....the Vit D thing.....but it's amazing what a little vitimin will do for ya....gonna get myself some Vit D for the house too...cause I guess my bones are really stressin lately.....but yes....vit D takes some of the deep pain away....Love to all....Diana |
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Hi to all, i'm new to the group, it's great to find a supportive and understanding group for this terrible affliction. i have rsd in both hands, right side including the forearn elbow and shoulder, also in the left leg to just above the knee. i finally found a sympathetic and knowledgeable pain MD with 10 yrs. exp. in rsd/crps. i start an agressive treatment on thurs., stellate ganglion blocks to both sides on a twice a week- 6 weeks in length treatment program. i've been through it before, but this time ketamine is also injected. it leaves you out of it for an hour or two but it has given me extended relief. ANYONE ELSE been given ketamine. hopefully at the end of this process i will only need bi-weekly or monthly maintenance injections. in addition the ulnar nerve from the fore arm down has a 70% loss in conductivity leaving numbness to the pinky, ring fingers, outside of the palm and forearm. the damage creates intolorable cramping of the palms and wrists. a 40% reduction in the carpal tunnel also brings problems. the numbness doesn't relieve sympathetic nerve problems, my nuerosurgeon located cervical stenosis but has recommended getting ulnar and carpal-tunnel releases first, before any more back surgery is performed. has any one had these problems, your input will be seriously considered. i just don't know which road to travel, and as this group is aware, sitting around contemplating what to do leads to txtensive stress levels, increasing the pain. i thank you all for allowing me to participate, and special thanks in advance for any insight or information that will help. in closing i would like any treatment options anyone has had for rsd's invasion of a leg ( i have had lumbar surgery, and after two ortho consults, multi-level fusions have been recommended) i've presently taken a pass. thanks for a forum to vent some of my issues, i've been through many treatments, including: eeg, emg, mri's, ect, multiple pain, muscle, nerve, vitamin, variuos injections and physical therapy. anything within my knowledge and experience which may help others, i am at your disposal. i will try to stay on top of issues of this group so i may be compassionate to others in this group love, understanding and prayers to you all, chris in chicago |
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| | | From: Tami62 | Sent: 6/11/2008 12:13 AM |
Hi lady,
I haven't talked to you in quite some time. I hope you are doing well. I haven't been posting much lately. Been battling some demons. I am glad to see you are still here. Miss you lots. It's nice to see you post.
Big soft hugs
Tami |
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| | | From: Tami62 | Sent: 6/11/2008 1:19 AM |
Hey there,
This is good info and I was wondering if you have some time to research a little and see if there is any articles on it to give us more information on how it helps us. I am so glad it is helping you and I think I am going start my hubby on it to see if it helps him too.
Thanks for sharing this tid-bit.
squeezes
Tami
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| | | From: Tami62 | Sent: 6/11/2008 2:17 AM |
welcome to our group chris,
I am a caregiver. My husband has RSD. I have a friend from this group who's husband had Katamine treatments and is now pain free. I don't think it is the same treatment that you are having exactly. He had to be in ICU in the hospital for 9 days. He wasn't put into a coma state like they do in Germany and Mexico but it is a high enough dose that it can't be done as outpatient. Personally I feel that Katamine is going to be the best hope for RSD pain no matter how they try it. There are lots of good things happening with it. I haven't seen her in here in a long time but the last email I got said her hubby has been pain free for about a month now. (he just had the treatment recently) He is still weak from muscle loss but doing good. He also has to get the boosters about every 3-6 months depending on how he does. The joined a website that allows you to journal online so you can share updates of how you are doing with all your family and friends. Here is the website. It might help you if you have a family or friend who can help write updates, it will be easier when you are not able to. http://www.caringbridge.org/
This was a great tool for my friends. I was able to keep up with how the treatments were going and how it affected my friend. It also helped his wife to have someplace to get out her worries and share her cheers. I recommend it to anyone who wants to have a personal site to share with loved ones. Wow I have babbled on and on. Anyway, I am so glad you joined and posted. I also want to thank you for offering to share what you know to help others. Please feel free to invite you family here as well. It will help them understand and get support as well.
Keep us updated on your treatments.
Tami
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thanks tami,  it feels great to be accepted by others with an understanding we are in it together!!!! the info on the ketamine makes these procedures a little easier to accept. will try to write, but probably not until a week from next mon. will be happy to share the outcome with everyone. hope and thoughts go out to your friend's husband, i've asked about this procedure but was told it came with a lot of risks. Did he have to go on a respirator and feeding tubes? i was hoping to get the relief with my procedure. thanks for the info and i'll check out the website. my wife has excepted your invitation and will help when i am unable over the next 2 mths. thank you for the warm welcome, tami, and i look forward to participating with every one in this group, again i think it will provide an exceptional avenue for treatment decisions. chris |
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| | | From: Tami62 | Sent: 6/13/2008 2:42 AM |
You are so very welcome Chris,
Please tell you wife that we would love her to join under her own member name so that we know when we are talking to her and she can make friends and get support too. I am trying very hard to increase the membership of the family and friends of people who have RSD. There aren't as many of us in here and we need the support just as much. I am on here fairly often and she can email me when ever she wants to vent or chat. [email protected] I am in the process of rearranging the boards so that the information is more organized and I will be adding a lot more helpful links with in the next few months so keep checking back. There may be something new the next time you are here. Thanks to both of you for joining in. Oh, I am not sure about my friend being on a feeding tube or a respirator but I will look into it and let you know.
Keeping you and your family in our prayers.
Tami
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Hi its Stacie just checkin in for June my goodness how the weeks fly by when ya doin nothing but sleepin it seems lol. Still in alot of pain here havent been on much recently due to pain i guess its the heat now thats causin some of it. Oh well hope everyone is doin ok and will talk more later. Hugs to all, Stace |
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Hi, just checking in and wanted to say i love the rsd ribbon, i made it a little smaller and put it in my email signature... Dawn |
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