Thanks, Rogue!

This time of year is killing me for some unknown reason! I am getting worse... my migraines, breathing, passing out, spasms, RSD, everything! I just wish I could concentrate to get more school accomplished... but I can't!

Night time stinks, but I am trying reading, but the bad thing is... I am too tired to keep my eyes open to read, but in too much pain to sleep! Argh!!

I have my pup! He is my comfort... I have sobbed so many times by him, while he looks on with his puppy dog eyes, and gently lays his head by me. He helps me survive this... he wants to sleep with me (except he is a 80 lb. golden retriever, and I am 5' 8" and have a single bed!!)... he is my baby!

Thanks again for the comfort!

Thanks Artist!

I feel like the worst of the ticks might be the deer ticks... they get SO small and you don't realize soon enough that they are there... those big ones give me the eebie geebies! They are the ones I find on Sammy and the cats the most (never had a huge one like that on me)... ok, enough! Ticks are disgusting!

Thanks for the link! I was thinking about it, but couldn't find it!

I would've done the same thing... wouldn't have fallen on the dog... owwee!

Hope you are doing well!


Froggsy, sorry we didn't get to chat! I had left the computer right after I posted to you! Hopefully when we get our "spoons" back in stock we can chat! Love you girly!

Hey there,

Had an idea; what about audio books? There are times when I find them just exactly what I need, they transport my mind elsewhere for a while, but don't need any physical input...here's an open source public domain site:
http://librivox.org/

And some great free stuff from the BBC and other places here - plays, dramatizations, run-downs on stuff like Alternative Medicine, book readings,... etc
http://www.partneraudiobooks.com/fre...FRlUTAod7kWdXQ

xxx all the best

Thanks, Artist! Great idea, and also an idea I got from my dear Rosie.

Subjects sound great- alternative medicine and book readings- both things I adore!


Things have been getting worse, and not better, for me. I passed out and fell off of my bed last night... bumped and bruised up myself pretty badly! My walking is deteriorating, and I am house bound unless someone gets me into the car, and then onto a wheelchair/ motorized cart. My migraines are continuing, and then the nausea is awful, and I keep vomiting/ passing out from pain.

All of a sudden yesterday the allodynia got wickedly bad in my arms (my arms were a little bit better, now they're as bad as everywhere else on my body), and sleep is hard to come by!

It is hard to see that things are getting worse and worse, because of all my time and effort into PT, hoping I could turn around this monster, and now feeling like it is mine for life...

Keep me in your prayers, please!

We've never met, but I've read alot of your posts. I want you to know and all who post on this forum that it gives newbies a great deal of knowledge and support. There are no words, my heart goes out to you. I am so sorry, I wish I could make us all bet ter. My thoughts and prayers are with you.

Hey Vanessa,

Wasn't sure if you'd go for that idea, but if you do - I know this is very British/Euro based, but the BBC's International Radio site has the (IMHO!!) very best "spoken radio" programmes in the world - on demand, you just click on and hear a recorded programme.

http://www.bbc.co.uk/radio4/arts/

They themselves call it "intelligent speech" and it sure is. Lots of short story readings and plays, all kinds of things. Actually the whole BBC International site is worth exploring...I realise that a lot will possibly be too Brit-oriented, [whatever you do, don't try to fathom "The Archers" ("An Everyday Story of Country Folk", it's been running in the UK for about 40 years!) - any Brit reading this will laugh like a drain ] but there's loads of classics, whodunnits (things like Sherlock Holmes), period drama, comedy progs, quizzes etc....I listen to it all the time, don't know what I'd do without it.

When do you see the docs next, and have they got any plans for treatment?

I get migraines all the time too, had them all my life though they've been worse in the last 5 years, almost permanent. I take far too much of the medication than I should; but if I don't, I get dreadful nausea and an indescribable neck and upper body kind of "extreme discomfort" - hard to explain; also severely painful eye auras and a bad tummy with that "nearly fainting" thing, plus the stupefying headache of course - but anyway, I can't stand it. But for me it's not the RSD causing it, I've always been headachey/migrainey - my dad was, very, so...for me it's genetic, I'm sure. Before anyone warns me about "rebound migraine", yes, hmmm, whadya do??

I completely understand what you mean about feeling the... unfairness?... after all those months of unrelenting PT. I think it's disgustingly unfair.

I reckon you need to find, quite urgently, some treatment regime that'll start to work for you, sounds like you really haven't found much to help relieve things at all. Tell the docs all about it, and be forceful and firm about needing, absolutely needing, to find a better way forward, and I think the sooner you do that, the better.

Take care, sweetheart,
all the best!

Thanks! I am eager to learn a lot myself to better help myself, and I really want to help others (I figure, right now, I cannot do too much about my own situation, I am pretty much waiting on doctors!, that I might as well pass on the knowledge I do know to help others!). I want others to know things I have learned both from hours of research and experience, things that I so wish I had known when I was first diagnosed!

Thanks for the kind words, thoughts and prayers!! I so appreciate that!

Thanks, Artist!

Thanks for the info on the audio books, I appreciate that!

I see the doctor on the 13th, to get my next nerve block. Right now my doctor is planning on just doing nerve blocks, as he thinks the medications I am on are right, and he really doesn't want to mess with them. To tell you the truth, I am confused, I am not sure what to do, I feel like I am banging my head against the wall, and cannot get to any good treatment!

My doctor is sending me to a rheumatologist to look into any vascular problems, and a neurologist as I do have many neurological problems. It seems that it is definitely RSD as it has responded to a nerve block (only for 2 hours, but still...), but my doctor thinks, and my parents and I highly agree that there is probably something else going on here as well (MS? It seems like that could be very likely with some of those symptoms!).

As I said, my doctor is only offering me nerve blocks, for now, and he said the last thing he would opt to do is a SCS. However, the neurologist that I am seeing offers trigger point injections, and I really would like to try them, and see how that goes. (have you tried them, do you know much about them?)

I feel so lost, and just confused about what to do.

I know that there is a lot of prejudice on using wheelchairs when you have RSD (like you are giving into the RSD)... but it really seems to be what I am going to "have" to use. I either have some movement disorder or extreme weakness that my legs shake like mad when I try to use them, and I am only able to walk around the house with assistance. So to get outside of the house, to avoid falling and be able to do things, I really need to get a wheelchair. It hurts to think that I *have* to and I am that disabled, but it is reality, and I need to have a better quality of life. I definitely would not rely on it in the house (always avoid using it in the house), but for use out of the house.

Are your migraines ongoing nonstop? Mine are, and they never go away. I can only get them to go away 50% some of the time with the cymbalta. I could only listen to audio books when my headaches are a little calmer than now. (I use sunglasses to use the computer because the screen is so bright- again, an idea from my dear Rosie! xoxo )

I just don't know what to do... waiting for the upcoming doctor appointments and hoping that they will do something that works... but what else is out there? SCS is last thing I would want to do, I did the beginning RSD stuff- PT (and yes, it seems unfair that I did that so diligently and so hopeful in it getting me better and it didn't -though a lot of my faith was in my knowitall doctor telling me that if I just did this, I would get better... ) and I am on different medications. I just don't know if much more is out there.

The only other options I can think of are TECs, SCS, different medications, TPIs and what else? I am on a home program for PT now, and I tried water therapy (helped a little bit), and I do desensing (though any progress I had is now lost! ), and faithfully take medications, herbs, vitamins, supplements, and eat healthy!

Do you have any ideas for me? We are getting pretty desperate! ! Except the reality/ disability and try to live as normally as possible from here? I agree that I need to urgently find someone who will find some treatment regime that will work for me! I am so tired of treatment not working, especially after months of the PT (that you know I had such faith in!).

The only good thing that someone (my dear Rosie!) has come up with is training my dog(golden retriever) to be a service dog for me!! What do ya think? I want to give it a try, and it would be something good/ "normal" for me to do, as well as something I enjoy as I just adore dogs (and had planned on becoming a dog trainer/ groomer )!

Okay, now that I have probably repeated myself 500 times, and I am just feeling so down about the whole situation, I had best go! I hope you are well, and thanks for your sweet note! You are so helpful. Hope to hear back from you soon!

P.S. I explained some about my situation/ dr/ blocks here: http://neurotalk.psychcentral.com/sh...15&postcount=1

Vanessa,
I truly hope that this is not what the rest of your life is going to be like. I pray every day that someone will find a cure. I want to make people aware of this disease and what it does to us. I got up this morning and wanted to write letters, but it's a bad day (I whacked my knee against a table leg yesterday - so hard that my 9 year old motorcycle racing grandson who has endured lots of crashes & broken bones, winced.) & I feel that I wouldn't be able to get the point across. I keep hoping that someone will find something to help. I, too, have a large dog & he's my buddy. He's a 70 lb. husky-sheperd mix who is also sick. He has hemalitic anemia, epilepsy,& phemphigus. A month ago, the vet said he might not last a week. For the past week, he appears to be in remission and hasn't had a seizure for weeks. So, miracles do happen. I just hope this miracle lasts for awhile, a long while. Anyways, this point is, keep hoping & praying. Have you tried any relaxation (meditation) CDs?
I hope you are doing better today.
Linmarie

Hi ya, sweet Vanessa. You mentioned seeing a neurologist. I think that is a very very good place to start. seems like your pain is coming from your head. the not seeing bright things, you having to wear sun glasses, the headaches, un balanced. plus, the darn RSD kicking in(Awful!!) etc. Vanessa, I felt so bad after reading your posts. I will keep you in my prayers for sure sweetie! Love, and gentle hugs, Desi

Thanks, Linmarie!

Aww, your baby (pup) sounds gorgeous!

I have done meditation type things, but right now with the blinding headaches I haven't wanted to hear any noise, so that is that for now. Though I do have quite a collection of relaxing classical music/ celtic music and such. They were helping me get through some nights when it is just impossible to sleep.

I know exactly what you mean about wanting to make others aware of this horrid disease and what it does to those who have it! Yes, miracles do happen, and God can work out anything! They've got to find the cure for this wicked RSD sometime, right?! I so hope that this is not the rest of my life!! I know I am being so darn pessimistic right now, but this is wearing on me a lot lately and I feel like I am getting no where!

I have been needing to write so many letters, but my hands are more cooperative typing, and my writing looks horrid (again! my hands were doing better a few weeks ago), so I never get to all the letters I need to.

Thanks again for the kind words, Linmarie! Nice having you here!