Bummer, huge bummer, :(.
 

Well, after 4 months of remission, dd's RSD has come back. Totally depressing and upsetting. Her health issues get me in the pit of the stomach.

Hyperbarics helped the last time and hopefully we can get her in a machine quickly. No $$$ so not sure how we'll pull that off.

I just wanted to tell someone who would understand. One added misery is that people just don't get it. :(

Thanks for letting me unload,
FaithMom

Re: Bummer, huge bummer, :(.
 

I'm so sorry. I haven't been on here long and I haven't had RSD long either, but I know what it is by now to suffer from this condition and I can't imagine someone so young having it either, and thinking it was gone and coming back. Wow!!

I have not been on this board long and have not had RSD for long either, but I can't imagine having this at such a young age. It just kind of reaffirms the thought that most have that this is never cured but only goes into remission and can come back at any time. I hope you can get her into HBOT soon.

Re: Bummer, huge bummer, :(.
 

From one heartbroken mother to another...

I am sad to read that your daughter's RSD has come back. I've read only a few of your posts and will have to start from the beginning to get a better picture.

But, no matter what's occurred in the past, it has to be so difficult to have it return. My daughter has been dealing with hers since early April of this year. Not long, but everyday is tough.

I hope you are able to find the money to repeat the hyperbarics (I'll have to read up on what that is other than knowing it has to do with water). It's a shame such therapy is not covered by insurance.

With much sympathy,
Another Mother who feels helpless.

Re: Bummer, huge bummer, :(.
 

Thank you so much, ladies. I've felt for both of you, it's such a horrible disease. "Broken-hearted" is the right word to use. I hope, hope, hope, IV Mom that your daughter doesn't have RSD. It doesn't really sound like it to me but I'm really a newbie. Fluttersby, I hope you are helped too. Sigh.

On the positive side, I just took dd to a new doctor, MD plus naturopath or something. She was still in remission than and he was very confident that he could help her. This is encouraging. Course, the PM docs were confident too (last year) and I don't think they really knew what they were doing, :(. So we'll see.

Also, I've been worrying that she would need a lot of hyperbaric dives again (she had 40 before) and I didn't know how in the world we would pull that off, but after talking to our HBOT technician, she may only need a few. This is really good news, at $100 a dive.

IV Mom, I'm convinced HBOT is the best possible treatment right now for RSD. You should definitely check into it, if your dd has RSD. Fluttersby, you might want to look into too. When dd started HBOT, in April, her pain was cut in half after 5 dives, and after 10 it was gone completely. You both need to check it out. It's expensive, but compared to all the blocks and meds and stimulators, it's cheap!! Not paid for by insurance though. Too bad.

Thanks again, ladies. I'm thinking and praying for both of you.

FaithMom

Re: Bummer, huge bummer, :(.
 

I'm glad things are looking up a little bit. I'm sure for me though worker's comp would definitely not pay for HBOT.

Re: Bummer, huge bummer, :(.
 

FaithMom ~ My daughter and I searched for HBOT last night. We found chambers under pressure with 100% oxygen. Is this what you were referring to for your daughter? With all the searching, I couldn't find out how exactly that kind of therapy helps. Do you happen to know? My daughter's pain doctor has recommended swimming, not for a specific reason though.

Also, I believe I read your daughter had a hard time with gabapentin. Would you mind sharing her experience with me through a private message if you'd prefer. My daughter's dose of gabapentin was just increased. I don't know what to expect and it's made me a nervous wreck. : (

Re: Bummer, huge bummer, :(.
 

Hi, IV Mom,

Yes, hyperbarics is just what you described. The therapy helps a wide variety of illnesses because of the increased oxygen to the tissues. If you google oxygen therapy, the wiki definition explains a lot. The problem in this country right now, is that there is a wide variety of HBOT therapies going on. Some are effective and some aren't. What determines the effectiveness is the percentage of oxygen and the PSI (pressure per square inch). We were happy to discover that dd's new doc has an Hbot chamber. However, she can only dive to 4 psi in his chamber. This is not high enough (low enough??) so we're pursuing a different chamber elsewhere. Some day hopefully the research will be in and the treatments will be standardized and actualized. One big way to tell what kind of treatment you're getting is whether the chamber is hard shell or soft shell. She needs 15 PSI which is only possible in a hard shell. Tacos, anyone?? Lol.

I'm certainly no doctor or engineer so I can't begin to talk about this with any credibility. Dd is pretty knowledgable, though. There is a doc in Fl who has had some good results with Hbot and Rsd. You could try looking for him. Don't know his name right at the moment.

She had a tough time with both Lyrica and Gabapantin. Dizzy, depressed, nonfunctional. Not good at all. People react differently though.

Hth, FaithMom

Re: Bummer, huge bummer, :(.
 

So sorry to hear this! It is so hard to predict RSD. One day things seem to be going better and another it kicks your behind and leaves you down and out for awhile.

I sure hope the HBOT helps her and she can find some relief soon.

Does she like heat? I sleep with a heating blanket on every night. It helps with the pain from the blankets/sheets and the heat seems to help relax some of the cramping I have. It's just an easy non-medicated thing that might help. No cure, but a help possibly.

Re: Bummer, huge bummer, :(.
 

K_Lana!!! So glad to hear your voice! How are you doing?? How is your ankle?

Thank you for your kind words. I will definitely pass on that heating pad idea to dd. She wants ice but knows she can't have it.

We've had a tough week but dd is doing better. After 10 dives she's down from a 9 to a 5. Thank God!! Nothing, nothing, nothing stresses me as much as Dd's RSD. Sigh.


God bless, FaithMom

Re: Bummer, huge bummer, :(.
 

So glad to hear your daughter's pain is coming down! I agree, nothing has been so stressing as rsd. It is a 24/7 battle.

My ankle replacement had to be taken out in August. I am currently on iv antibiotics because a culture did show a bone infection, although the suspicion is still the rsd is what caused the bone to not take to the replacement parts. I have another surgery in a few months to fuse my ankle. So I still wait for the new spinal cord stimulator. That is on hold for awhile since all hardware in my body since rsd has caused infection. I need this ankle resolved first so I can walk. I have been on crutches almost solid since last December.

My rsd is the same, pretty intense. I am now seeing an endocrinologist because some of my hormones are low, probably due to the stress my body has been under from the ankle, rsd, and all the surgeries ( 4 last year and this next one will be 4 this year).

Re: Bummer, huge bummer, :(.
 

Oh, shoot. I am so sorry to hear this, K_Lana. To go through those surgeries and then get nowhere!!! Shoot, shoot, shoot. I am sooooo sorry. You certainly have a lot on your plate, :(. I am definitely praying for you.

I'm interested in what your hormone doctor finds out. Our daughter was just tested for cortisol, (sp??) but we don't know the results yet. I hope they find some answers for you and that it makes a difference.

I talked to dd today and her pain has gone down even lower. Thank God!!! I just can't handle seeing her in pain.


God bless you, K_Lana. I'm thinking of you. ((((Hugs))))

Re: Bummer, huge bummer, :(.
 

Hi Faith mum, I'm so sorry for you and your child - and the horror you must have felt. Glad the hyperbaric oxygen is still working for you tho' - this does seem to be the answer for you - if our techniques of warm towels, massage meditation and exercise stop wworking, that's something we would try, so thankyou for letting us all know about this.

Re: Bummer, huge bummer, :(.
 

Thanks so much, sswallow. Dd is doing well, back in remission. She has a lot of feet issues though, so this isn't over. She's in a hard place, needs surgery for her flat feet, can't have it because of the RSD. PT helped for a while, but I don't know what to do now. At least the RSD is pushed back, at least for now.

Thank you for your kind words. How are you doing?


FaithMom

Re: Bummer, huge bummer, :(.
 

Hi Faithmum, yes we're doing OK, but I can remember the horror of it all. He's not 100% out of the woods yet and I'm making an appointment with the osteopath at half term to help him get his feet movement more natural, plus he's got a bit bored of me telling him about exercises and needs another person's input.
The RSD type response mostly seems to have gone now for example, he had about 5 people land on him in football and a boot in his face (he's a goalie) and it was just pain, not RSD pain. He seems to know the difference and if RSD pain is pending he think of it as needing warmth to help it 'stretch' and if its just injury pain,, he asks for ice. We had a scare over the summer because he got RSD pain after riding for the second time in years and the stirrup was wrong for him - but it seemed to be adrenaline based only and we calmed it down in a few hours by getting him to concentrate on breathing, then reading a book and when we got home, then warm towels and an anti inflammatory. The other scare was a graze on his toe that caused 'electric shocks' and made his whole skin sensitive - I massaged that with warm oil with lemon balm in (I think Lemon Balm has a similar effect to the calcium blockers in Epsom salts) and it went away.
He also switched after the injury to being a no fish vege and although I have to work hard to find the amino acids found in collagen, I think the diet contains so many natural calcium blockers that it's helped wit the pain
Its a long hard worrying haul isn't it, and I wish all the best to your daughter and to you.

Edit - the osteopath explained to me why my son might have such incredibly high arches and has exercises for that - maybe they know about flat fett??????

Re: Bummer, huge bummer, :(.
 

So happy your son is doing well!! YAY!!! What a relief!!

I don't know what to do about dd's flat feet. She's done exercises, that helped for a while but now it seems nothing is helping. Sigh.

Please tell me more about what you're saying about calcium blockers. I don't know anything about that.


Thanks, FaithMom

Re: Bummer, huge bummer, :(.
 

Hi Faithmom!! I have not read your whole story, not because I'm not interested but I'm new to working my way around this site.. I did read your RSD story involves your daughter.. And because of that I had to reach out to you.. So hopefully I'm doin this correctly and you read this.. I've had RSD for almost 4yrs now and my situation has gotten worse.. But to think of one of my children having this would break my heart in two.. I am with all my heart so very sorry your child (daughter I think) is going through this.. I hope you have a good support system through your husband and friends.. And please know I include you in my prayers.. We don't need to personally know each other for me to do that.. I wish you and your family the very best... Izzabelle

Re: Bummer, huge bummer, :(.
 

Oh, wow, Izzabella!! What a nice thing to say!! Thank you for your sympathy. Going through this has been difficult, to say the least. Our daughter is 16, and she's loaded with dreams and ambitions and motivations. To think of her disabled the rest of her life breaks my heart!! Her suffering makes me cry. She's doing well again but I worry so much. I keep reminding myself that 18 months ago I had never heard of RSD. I am now aware of a whole new world, :(. I had no idea people suffered like this.

Thank you again. I appreciate your understanding so much.


God bless, FaithMom

Re: Bummer, huge bummer, :(.
 

Just an update to say that our daughter is back in remission!! YAY!! She has no symptoms of RSD at all. I'm so grateful, but also worried. How long will it last?? I guess we just take it day by day.

Thanks for listening,

FaithMom

Re: Bummer, huge bummer, :(.
 

Faithmom hello!! I was so happy when I read your recent post!! That's wonderful news!! I've never been in remission Infact I didn't know it was possible until I came to this site.. So since there is a possibility of remission I'm beyond happy it happened for your daughter!!! I pray it continues.. And yes all we can do is take one day at a time.. May her days of remission go into years of remission.. No child should have to suffer with this horrible condition.. God bless you all!! Thanks for sharing the great news!!