pain
 

Woke up this morning to about 11 inches of new snow..I am so sad because both legs hurt today.I usually have rsd in my right hip to my foot.I. had a melt down already with the pain.its terrible.hurts to walk so I guess I will not be doing that..left feels just like the right-crying a lot today.sorry to lay this all out,but I have been having signs it is going into my other leg,but I did not want to face it...I hate this..hope you all are doing okay..what's your weather

Awe Moosey…. I’m so sorry. I saw on the news that you all are getting just hammered with snow. :eek: I’m sure all that weather and perhaps stress from time of year is definitely not helping.

I got on here just now because I too am welling up with tears due to pain. I have had to get real aggressive today with meds, and that sucks (side effects). I had planned to try and finish up some shopping. Looks like that won’t be happening. Instead I am stuck in bed trying not to move.. breathe. Ug!

I have been very symptomatic lately with all things CRPS II, and bonus, my lower back has decided to get in on the action. The muscle spasms I experience with CRPS (mostly in my legs), when bad, seem to make its way to my lower back. It’s miserable for sure.

Again I’m so sorry that you’re hurting so bad. I hope you get relief soon! :hug:

pain no fun
 

I am sorry to hear you are so well either.I have so much to do,but hurts to walk..hope is all I can think of right now..best wishes to you

I hear ya on the to do list. I just sent my husband off with a good deal of the list that was to be accomplished by both of us today. He seemed genuinely annoyed which is unusual for him, but he's human and I know it irritates both of us. <sigh>

Vrae & Moosey,'
please try warm up and feel better!!
Please don't hate me because I would send you some buckets of warm sunshine if only I could !! I'm in a suburb outside of Phoenix, AZ.
Come on now, some meditation....feel the warm sun soaking into your limbs...
The only downside is you wouldn't want to be here in summer.

VRae, I remember someone had to remind me when i was down and crying about
needing help. "They're frustrated at the CRPS not at you".

That is an excellent thing to remember! Thank you.
He's out shopping, bless his heart, and texting me pictures and calling and well... we're getting it done. Really... he's getting it done. Thank goodness!

My drugs have kicked in and taken the edge off for now, but I have taken up residence in my bed today. This morning was bad. Anywho, I'd take some Az sunshine for sure! But I lived in West Texas for a decade and you can keep those ridiculously HOT summer temps! Just like I am sure no one wants the cold. :)

It's good to lay it all out....Sorry your pain is so intense. You must live in the east. I'm in Wisc and only got a couple inches. 11 inches of snow doesn't make it easy for people with RSD. Stay inside and stay nice and warm! It's bitter cold out there. It's one of the worst things for us and our pain.

I really really really hope you feel better soon!!:hug:
Heather

Hey Moosey :) and Vrae and everyone else feeling the cold and wondering when they will next soak up any warmth from the sun...

It's bitter and miserable here in the uk too...not cold today, it's got milder, but we've exchanged the cold for damp and windy unsettled weather....gets right into my bones and everything is worse :rolleyes:

Wouldn't it be fab if there was some ideal country where we could live, in permanent calm settled weather, warm (but not hot lol), with fluffy clouds in a blue sky and an excellent health care system that was free for everyone and had plenty of CRPS experts...not to mention an excellent benefits system and jobs to suit those of us that want them but struggle to fit into a 'normal' job....

Ah, now there's a dream....:winky:

Hang on in there you wonderful folk, the sun will return and we will feel warm again :p

Bram :grouphug:

Which meds take the edge off? I had bad pain Friday night and was only given ibuprofen 600mg and take 900mg of Neurontin a day. I go back to my neurologist tomorrow for him to order a MRI and either bone scan or done density test. Maybe get an ideal on meds that will at least take the edge off too.

thank you
 

Thank you all..I am still in bed.Have to work tomorrow..I already feel like saying you have to be kidding me!!!!Today has been terrible..But thank you all for your messages..Just seeing them makes me feel I am not alone...

Hi murgir, Well... I take 1200 mg gabapentin 3x p/day, and one 350mg soma at night. that's a typical day. today, and this is the first time I've done this, I have been taking a 350mg soma every six hrs starting at 3 a.m. this morning. Then I added a tramadol about 6 a.m. By 9 a.m. I knew things were not getting better so I added a Roxicodone 5mg (which is the equivalent of a 5/325 Percocet, it just doesn't have the acetaminophen). I followed that up with a Zofran because otherwise I just feel like I will get sick. That took the edge off, or at least kept me from crying b/c of pain. At 3pm I took a tramadol and another soma. It's 6pm here now. I have laid around all day. Trying to rest my back. Soon I will take a hot bath, and return to bed.

I get a BLAZING headache from the roxi or anything opioid. I hope to discuss that with my doc soon. Until then I am having a soda for the caffeine. Perhaps that will help my head.

I have had to use my walker all day to get my initial moment going in my legs. Right now I feel a dull burn in my legs (crps). The pain I am dealing with in my back just ramps up the CRPS symptoms.

Hope that helps somehow. :hug:

So you take a total of 1200mg of gabapentin or 3600mg a day? Does your pain ever get better or are you ever pain free? I am a pain wimp. I am so scared. My calfs are aching as well as my good arm now. When you are able to get out are you always in pain?

I take the maximum dose of 3600 mg per day. And here's the kicker, it's really not working as well as it did months ago and my CRPS symptoms have been regressing for a while now. I believe the gabba to be the issues I am having with my stomach. Either that or it's a gallbladder issue. I think I am going to have to try another drug soon. Sucks because it really was helping for a while.

Am I ever pain free? Gosh I wish, but no. Just levels and degrees of pain and tolerance. The more physical I am the more pain I will have OR the more I sit for a long period of time = more pain and spasms in my legs, arms etc. I also get very weak. Like I've run a marathon and my legs are spaghetti noodles.

I started on 300 a day has been upped to 900 over a 3 week period and I am having pain worse in my good arm and not my bad one tonight!!! One week with 900 mg and pain already. Have you ever been on lyrica or is the same as gabba. I was wondering if you switch from one to the other if it would help. I can see my gabba dosage increasing quick. I do not have pain all the time yet.

Hi Moosey! We got snow mixed with sleet - lovely. I used to live in Syracuse , New York so I know all about those big snowfalls! Use all your strategies to get some comfort - do warm water baths help you? AZ- Di you are so right! I have mistaken my loved ones behavior as being upset with me, and usually that is wrong. They get fed up with CRPS too!

Oh no! That stinks!! I am so sorry. I used to have "good" ____________. The thought or feeling of spread can be horrible and scary for sure. I hope that's not what is happening.

Um.. yes, changing meds maybe required. It might be required several times along the path. It's weird because you find a combo that works, and then some time later... not so much. I have tried lyrica but at the time neither one (gabba or lyrica) was helping. I am ready to give that or whatever else they can come up with a shot. I have a new neuro doc that I will see in about a month. I really hope he can help me. I hope you can find a combo quick that works for you too. At least you are having some pain free days. enjoy them as much as possible. Stay as active as possible too, and try not to over do it, which is exactly what I did yesterday.

I hope tomorrow is better! Work... ugh! I hear ya on that too. My back is still spasming and I'm suppose to sit and edit for hours. I just don't know that it will happen. I keep falling further and further behind with work. :( So very frustrating!

Vrae this is exactly like me with the Gaba, it seemed to be helping for a while, and then it was just gradually getting out of control again, then my stomach got really bad....and because of two nasty bouts of sickness, diarrhoea, cramps etc where I couldn't keep anything (including pills) down, I realised that it just wasn't making much difference anymore.

I stopped taking it, and my stomach got better. It was as clear as that. My pain levels didn't change much for about a week, then when the stabby pains got too bad I went back onto Lyrica and have stuck with it since on a low maintenance dose that seems to get rid of the worst pains most of the time. I take that over those dreadful stomach problems every day of the week. My pain doc said its not unusual for Gaba to stop being as effective, also the stomach problems are known. Some tolerate it well for years, others just don't.

Finding meds is different and difficult for us all, there just isn't a set of meds designed for CRPS, so we are all experimenting, and many of us taking things 'off-label' that help a bit but were never designed to treat it. One day perhaps someone will make something just for us tha actually works reliably...:rolleyes:

Hope you are all feeling a little better today. I'm sorry things are so hard, it's not fair. Good luck :)

Bram.

Meds...
 

Sounds like we all are in the same boat..I have tried same meds..with gab.. had the same issues..I have pain every day..I cannot remember a painfree day..Meds. are always changing.They work for awhile then they do not..I go to pain mang.. in Jan..I wish I did not have to go anymore..Its always the same thing...He says why??what did you do...RSD just happens to do what it wants and when...well hang in there.:hug:

better days
 

I hope you are better today..I am better today..Some pain,but not as bad as yesterday..Went to work came home,in bed with heating pad..Have to return to work at 1....Snow added up to about 12 inches in total Gloversville ny..the cold makes everything worse..Have a better day....:hug:

Now, you may be on to something marketable there:D
A pain meditation audio for us!! Or wait, there's specialty cancer centers with everything DX, treatments, support groups etc. Why not something for us?
Do love your dream though!