[stressedout]

I am so frustrated and physically and mentally drained. I had 6 nerve blocks done that took about 75% of the pain away....for a wk and a half. The pain has returned and the burning, pins and needles is even worse. I feel like my arm is on fire and it hurts at the same time.I got 2 hours of sleep Tues night. The dr won't/can't see me till next Thursday. He had given me Tramadol (Ultram) back in April but that doesn't even touch the pain. Nothing else, Dr says this is very mild...not to me. I can't do this anymore. I tried melatonin last night to sleep and I am not sure if that worked or if I was just so exhausted but I actually got 4 1/2 hours of sleep. After the nerve blocks I was feeling so optimistic, they were planning an FCE to see if and what kind of work I could go back to. Now I am back to square one. I push through therapy because I don't want to go backwards anymore and I think wc is going to cut that off (last approved day is this Thursday). I am allergic to aspirin so am hesitant to try alot of the over the counter meds but is there something that may wk?? I need relief. Moist heat helps too, I found 2 moist heating pads in the store yesterday and wrapped my arm up in them last nite too. I feel like the Dr doesn't believe me. I am ot crazy...yet. I have seen a lawyer, he is requesting a second opinion and counseling but I need help now.

[kathy d]

Dear Stressedout and in pain,
I hear ya loud and clear. Unfortunately, I know exactly what you are going through now. I live near Phila, PA and the weather and humidity have been awful which is causing everyone I know much more pain...including me. You need to be comfortable that is your #1 priority. Make sure the A/C is on which will help with the humidity and heat. I like to give myself a time out. I go into my bedroom and turn all the lights off and make it as dark as possible with nothing on and I cry...and pray. I get it all out and then regroup myself and get back up in about 40 mins to an hour and keep moving on. It does help me to do this so maybe it will help you. We can only handle so much. Can your doctor prescribe one of the sleeping aids such as Ambien or Lunesta. I know I take Lunesta now and it helps a tiny bit with pain and also gives me a bit more sleep than usual. I know there is an over the counter supplement my neurologist told me to take it is called "Same." You can get it at Walgreens or any pharmacy. It contains something to relax you to help sleep, it helps with joint problems, and a mood help too. I had to stop them cause I was allergic to them but other people I know take them and it helps.

You are doing PT and that is good but be careful not to go overboard with it and cause yourself more pain. There is a fine line with this disease and if you cross it with anything you will be in more pain.

An you are NOT crazy. You are feeling real pain but most doctors and people only associate pain with your arm or leg falling off and even then can't understand the large amount of pain we deal with. You just have to stick up for yourself and tell them the way it is. I had court last week and had to represent myself!!! In all the pain I am in (full body RSD, Fibro, Rheum Arth, and Osteo for over 4 years now) and can hardly get out of bed and I had to represent myself. It did feel good to finally after so long have a judge listen to me. Hang onto hope and never give up but you must stand for yourself. I had doctors look at me funny and think I was faking too. I just tell them "May God bless you or someone you love with RSD like I have if only for a day and you would know the extreme pain I am in. There is a Magill pain index and you can tell your doc about it and show him there is no other pain higher than RSD pain. People just are ignorant and there is nothing you can do about them. Do you have a family doc you could see or call for help that knows you? Sometimes they can help. I will keep you in my prayers but try to laugh at one thing a day and pray if you can...they are the only two things that have gotten me through the day.
Have a better day today,
kathy d

[Jeanninemm]

Seems we are both in the same position right now as far as the pain goes....Have you tried a TENS unit? My pm dr gave me an rx for one and it is a godsend sometimes, in fact Im wearing mine right now...have had horrible icey/fire pain in my foot, toes and fingertips all day. I wont get my next series of nerve blocks until another 9 days...so I live with the TENS unit, a heating pad and my epsom salt baths as night...Im also on Lyrica, which at the time I started relieved about 50% of the pain, though the side effects are pretty bad, but you weight the risk to the benefits...also, I am lucky enough to go to a therapy pool that is about 1/4 th mile down the street...just went this morning to help the pain for a bit....best wishes to you..maybe you could ask your Dr for the tens unit rx
Cheers,
Jeannine

[ali12]

Hi Stressedout,

I'm so sorry to hear that you are dealing with all of this right now!! I really wish I could help you and ease your pain and problems but I can't unfortunately. Please just know that you are in my thoughts and prayers and if you ever need anyone to talk to, I am here for you.

I can totally relate to what you are going through right now!! I have been in lots of pain for the past week and had to miss 2 days of school this week because of it. My knee has been killing me as I have some issue going on in it (not sure what right now until I can see someone about it) and whenever I bend my knee, it hurts a lot and brings tears to my eyes. It is so annoying as everything thinks that I am really strong because I have RSD and some people just think that I can cope with everything that this disease chucks at me, even when I can't and feel like giving in. Like you, I just want something to help but nothing I have tried as helped really.

I know it is really hard (trust me, I do) but please don't give up hope of finding something that will help you!! You HAVE to have faith that things can get better when dealing with this awful disease even though it is really hard at times. Without hope, we have nothing!!!

Do you see a Psychologist or someone to help you through your RSD?? RSD affects your life so much so it's important to have someone that you can trust to talk to. My first Psychologist was useful however I see a new Psychologist at London and she is really nice and has given me some 'coping' techniques which help a little. I still get depressed but know I can email her if/when I have any problems so it helps.

If the pain gets really bad, please go to the ER! I know you probably don't want to but you shouldn't have to cope with all this pain!!! If you do decide to go, take some info with you on RSD for the treating doctor to read. I don't go to the ER as over here in the UK, none of the doctors seem to know anything about RSD. My mum usually calls my PM Dr and he can usually see me almost straight away or the next day.

I hope you are able to get an appointment with your doctor soon and that he is able to give you something to help you. Maybe try a TENS machine if you have one or get some Epsom Salts to see if they help you in the meantime.

Please know that I am thinking about you and totally understand what you are going through! If you ever need/want anyone to talk to, I am here for you!!

Take care of yourself. Sending many pain free hugs your way!

Alison.

[SandyRI]

Do you have a personal care physician? Or a walk in clinic near you?

I can relate - my pain was not well controlled for a long time, it was really awful. Until I added Methadone to my ever increasing list of meds. It has been a life saver for me.

I don't think that I was aggressive enough in asking for pain relief meds when I should have been.

You really should find a doc before Thursday to write you a script for meds stronger than what you have, so that you can get some relief.

Good luck, Sandy

[daniella]

May I ask where you live and if you can find a new pain doctor to help you? If I were you on Mon or if they have an emergency number I would call your doctor and ask to speak to the nurse and say you can't wait till Thurs that you are in too much pain. Also since it sounds like you are not getting relief I would look for another opinion or approach. I can really relate to the no sleep issue. I can go couple nights with non and on most I sleep a few hours. Really it makes this so much harder to deal with. I do see a psych for the mental side of this where as before I did not. I am glad I finally have though my anxiety and sleep are still bad I have made progress. You may want to look into that as well. Sending thoughts your way

[loretta]

Originally Posted by kathy d

Dear Stressedout and in pain,
I hear ya loud and clear. Unfortunately, I know exactly what you are going through now. I live near Phila, PA and the weather and humidity have been awful which is causing everyone I know much more pain...including me. You need to be comfortable that is your #1 priority. Make sure the A/C is on which will help with the humidity and heat. I like to give myself a time out. I go into my bedroom and turn all the lights off and make it as dark as possible with nothing on and I cry...and pray. I get it all out and then regroup myself and get back up in about 40 mins to an hour and keep moving on. It does help me to do this so maybe it will help you. We can only handle so much. Can your doctor prescribe one of the sleeping aids such as Ambien or Lunesta. I know I take Lunesta now and it helps a tiny bit with pain and also gives me a bit more sleep than usual. I know there is an over the counter supplement my neurologist told me to take it is called "Same." You can get it at Walgreens or any pharmacy. It contains something to relax you to help sleep, it helps with joint problems, and a mood help too. I had to stop them cause I was allergic to them but other people I know take them and it helps.

You are doing PT and that is good but be careful not to go overboard with it and cause yourself more pain. There is a fine line with this disease and if you cross it with anything you will be in more pain.

An you are NOT crazy. You are feeling real pain but most doctors and people only associate pain with your arm or leg falling off and even then can't understand the large amount of pain we deal with. You just have to stick up for yourself and tell them the way it is. I had court last week and had to represent myself!!! In all the pain I am in (full body RSD, Fibro, Rheum Arth, and Osteo for over 4 years now) and can hardly get out of bed and I had to represent myself. It did feel good to finally after so long have a judge listen to me. Hang onto hope and never give up but you must stand for yourself. I had doctors look at me funny and think I was faking too. I just tell them "May God bless you or someone you love with RSD like I have if only for a day and you would know the extreme pain I am in. There is a Magill pain index and you can tell your doc about it and show him there is no other pain higher than RSD pain. People just are ignorant and there is nothing you can do about them. Do you have a family doc you could see or call for help that knows you? Sometimes they can help. I will keep you in my prayers but try to laugh at one thing a day and pray if you can...they are the only two things that have gotten me through the day.
Have a better day today,
kathy d

Hi kathy d, that was a really nice compassionate answer to stress out. I think its the RSDSA website that has the McGill Pain Scale. It goes up to 50 and RSD is 42. You are right on- people don't get it, just how much pain we are in. Thanks for the encouragement for all of us. Your friend, loretta

[loretta]

Originally Posted by stressedout

I am so frustrated and physically and mentally drained. I had 6 nerve blocks done that took about 75% of the pain away....for a wk and a half. The pain has returned and the burning, pins and needles is even worse. I feel like my arm is on fire and it hurts at the same time.I got 2 hours of sleep Tues night. The dr won't/can't see me till next Thursday. He had given me Tramadol (Ultram) back in April but that doesn't even touch the pain. Nothing else, Dr says this is very mild...not to me. I can't do this anymore. I tried melatonin last night to sleep and I am not sure if that worked or if I was just so exhausted but I actually got 4 1/2 hours of sleep. After the nerve blocks I was feeling so optimistic, they were planning an FCE to see if and what kind of work I could go back to. Now I am back to square one. I push through therapy because I don't want to go backwards anymore and I think wc is going to cut that off (last approved day is this Thursday). I am allergic to aspirin so am hesitant to try alot of the over the counter meds but is there something that may wk?? I need relief. Moist heat helps too, I found 2 moist heating pads in the store yesterday and wrapped my arm up in them last nite too. I feel like the Dr doesn't believe me. I am ot crazy...yet. I have seen a lawyer, he is requesting a second opinion and counseling but I need help now.

Hi stressedout,
This is not good to be in this kind of shape on a Friday night. It sounds like you need some break thru meds or something stronger. I have a tens unit prescribed for me by the Dr. that first diagnosed me. It helped a lot and you can re-order the patches on the end of the leads. It has different settings and definetely was a helpful distraction for me.
Sounds like WC trying to get you off their books as soon as possible. Glad you have an attorney. I know you need help now, sounds like the only way to get that is like others said, ER or Walk-In Clinic Or call family Dr. Since most Drs. don't know what RSD and look at us as drug seekers, it would be good to take some printed info with you. After many Drs. I finally found one that really understands and is there for me. He is a neurologist, psychiatrist, and pharmacologist. I'm so grateful I've had him to talk to. There are so many pieces to coping with this painful, life altering, disabiling disorder. We all need help and each other. Sometimes, it only comes from someone with RSD, and sometimes it's a friend or family member, and sometimes, we can't talk to anyone but a professional. You deserve the best care possible and WC in insurance you deserve being hurt on the job. I'm sure
you want to work like all of us, but RSD sometimes make it impossible. Hope you find the help you deserve and need. Please keep in touch and let us know how you are. Your friend, loretta

[bobber]

Originally Posted by stressedout

I am so frustrated and physically and mentally drained. I had 6 nerve blocks done that took about 75% of the pain away....for a wk and a half. The pain has returned and the burning, pins and needles is even worse. I feel like my arm is on fire and it hurts at the same time.I got 2 hours of sleep Tues night. The dr won't/can't see me till next Thursday. He had given me Tramadol (Ultram) back in April but that doesn't even touch the pain. Nothing else, Dr says this is very mild...not to me. I can't do this anymore. I tried melatonin last night to sleep and I am not sure if that worked or if I was just so exhausted but I actually got 4 1/2 hours of sleep. After the nerve blocks I was feeling so optimistic, they were planning an FCE to see if and what kind of work I could go back to. Now I am back to square one. I push through therapy because I don't want to go backwards anymore and I think wc is going to cut that off (last approved day is this Thursday). I am allergic to aspirin so am hesitant to try alot of the over the counter meds but is there something that may wk?? I need relief. Moist heat helps too, I found 2 moist heating pads in the store yesterday and wrapped my arm up in them last nite too. I feel like the Dr doesn't believe me. I am ot crazy...yet. I have seen a lawyer, he is requesting a second opinion and counseling but I need help now.

Im sorry to hear about the stress,,God will answers all prayers,,,my biggest problem is being inpatient and watching myself getting worse is the worse,,i just dont when its going to leavel off,,,the melentin works well with me,,its not a fluke with you just being exhausted..it works my wife got a bottle for me,,it nots the edge off..better then nothing,,,i wish you well with the wc,,i personally believe you are too far in with the wc, that they cant deney you,,i went dont that road 20 years ago,,,they try to get rid of you and try to scare you but believe me ,,,by law they cant,,,you gotta jump thru hoops,,they do that hoping you will quit and throw in the towel,,,,they dont want you to know that actually,,you are in control, they arent,, they work for the company,,,so they try to frustrate,,,plus,,,the Lord in whom i serve is with you,,,he will deliever you,,,get you 2nd opion,,,and keep in touch with the big guy up stairs,,,bobber

[stressedout]

Thank you all. I am still having lots of pain. It's better in the morning, stiff. As the day goes on though it gets really bad. I was in so much pain last nite I was nauseas. I am going to call my family Dr on Monday and see if he'll see me and help. I don't want to wait to see the pain Dr on Thursday. Feels like little electric shocks going through my hand and arm. How can something so numb hurt so much? I hope I can continue with therapy. I feel like we are getting somewhere even though I still have some swelling and all this pain. Sometimes my fingers just don't want to work though.I am afraid that if I stop now that it will get worse. I felt like my hand was going to fall off after folding one load of laundry today. This is not me. I was always in control, doing for everyone and very organized, now my world is crumbling around me. I can't come to grips with this thing. I miss all the things i used to do. My kids and husband don't understand. The Melatonin is definately helping me get to sleep but I can't stay asleep. I want my life back.