Hello Brenda. I am sorry to read your post but I am pleased you are seeing people who can help you through. I am sorry you are so very down but I imagine a long time with pain will do that especially if you are not getting any rest. This disease does bring many anxieties and worries with it. It seems you have been ill for a long time. What are they doing for your myositis now. I am thinking of you and wishing you well. Keep going and talking about your anxieties and surely in a bit of time you will break through. Best wishes. Autumm

I'm sorry to hear about your feelings. I don't think they are uncommon. There are times when I feel pretty anxious about my current state and where I seem to be headed. I think seeing a counselor is a great idea. I know I've said it before but I would not hesitate to try an anti-depressant. Sometimes that helps with pain too.

I am probably overstepping my bounds here but I am really concerned with the narcotic use. I know you have significant pain but I'm not sure narcotics around the clock are the answer. They are making you sleepy, impacting your concentration, contributing to your depression, and making you constipated. I can imagine how you feel because I had a very painful surgery several years ago and I was on strong narcotics around the clock for 6 weeks to deal with the pain. I felt very much like you describe. Not only that, narcotics are addictive so you need more and more to ease the pain. It was so hard for me to get off them. I don't want that to happen to you.

I am glad you are seeing a pain specialist. Since they can't relieve the pain, what about a pain medication that isn't a narcotic and then helping you deal with the chronic pain in other ways? I'm probably "up in the night" with that suggestion but I care for you Brenda and want to see you back to your same happy, optimistic self.

Lexis has expressed my feelings quite well. I hate to read of your discouragement, because you are such a beloved pillar of strength in this online community. And you are very wise in seeking a counselor.

A few years ago when I had chronic 24/7 pain, it was difficult to make it through each day, and I felt bad about myself. Your comment about looking into a mirror really struck me, because that's how I was. Have your doctors ever checked you for Lupus, Fibromyalgia, or Thyroid problems? Lupus or Fibromyalgia could bring about much pain, and Thyroid issues can disrupt our emotional well-being.

Please know that I am praying for you, Brenda, and for your doctors to have wisdom in treating you. Do not hesitate to "vent" to us. We care and wish for better days ahead for you.

Brenda, I am also having problems with my brain. I will be seeing the neurologist soon. I am praying that you will find the correct treatments. Do your best to claim those promises and trust The Lord! Keep us posted.

Thank you all my dear friends. I come to you all first because we suffer through the same disease and understand it best. My pain specialist is the one who provides and monitors all my pain meds and the best thing about it is that she is in the same practice as my neurologist and rheumy and even though I see at least 2 of them on the same day they have me to review my meds sheet with each visit. I also ask many questions regarding the meds so that I do not have any issues. It is not my PM that causes my pain even though my CPK keeps going up each month and we don't know why. It is the damage nerves that were cause by my high blood glucose which is caused by the Prednisone. My rheumy is trying to taper me off prednisone even though my neurologist thinks that I would be better with more prednisone. That is why I am having IVIG. I have had two IVIGs and the neurologist told me that I should not expect to see any relief in less than six months. The therapist has suggested yet another pill for the depression. I had been refusing it for months because I didn't want another pill in my system especially since I do not have an appetite and very seldom eat. I have lost a lot of weight. She said that it may help with my pain, so I finally filled the RX that my pain specialist had given me over a month ago. I had folded it up and decided not to fill it because I thought that it was just another sleep aid, but come to find out it was for depression as well as sleeping. She told me to take it before bed so I started taking a few weeks nights ago. It does help me stay asleep, but it doesn't really help my pain. She told me that the type of pain that I have will never go away and that there isn't anything that I can take that will stop it complete. I have tried the patch and felt nothing. She wanted to giv e me an implant but I am not comfortable with an implant. She had me try a pain pill over the mother's day weekend and if I could have I would have removed my legs. The pain was so severe that I did realize that the Opana was working but only takes away about 50% of my pain. It scares me to even think how bad pain can get and to not have anything. My rheum and my pain specialist explained the addiction that can come from taking these pills and I make sure not to over take then. I have to take them in for each visit each month so that she can check how many I have and she even took the ones that didn't work at all. That was a waste of $25. I took 6 of the 30 pills. In fact some times if I am out and don't have the pills with me to take at the 12th hour the pain is awful. I won't allow myself to become addicted. I have an appt tomorrow with my therapist, which I really need. My father died this morning and I am a mess, but trying my best to get through one day. Again thank you for caring. I am going to be better one day. I know this and I still believe that God wants me to use this illness to get to others who need me. One day I will find my way back to my passions. One day at a time.

I'm so sorry to hear about your Father. That just is too much. My thoughts are with you and your family at this difficult time.

I'm glad your doctors are watching your pain closely and the medications they are giving you. I would be very upfront with them how you are taking them. There are some that won't work well for "sudden" pain. It can't cut the pain for a short period of time. You need to take them on a schedule to maintain the pain over time. It could be that your pain is significant because you take it when it is unbearable at the time. Does that makes sense?

I hope the IVIg is helping. I know it takes awhile but hopefully you will see something soon. Depending how you are tapering, that could be causing pain. I know I really hurt a I got off Prednisone. It lasted a few weeks after I was off.

You are in my thoughts....

Brenda. You are ever in my thoughts. I do so hope that life gets better for you soon. You look so pretty from your picture, you are brave too. Autumm

Hey Brenda I too am sorry about your dad. My dad had a stroke in Feb. this year and it has been tough just to see him sick.I hate to think of the day when the Lord takes him from us but we all know our life and our loved ones are in God's hands. I too have to take a lot of medicine and have every since they told me I had fibromyalgia, PM, neuropathy, and asthma. My neuro. will not let me take predinsone due to the side effects, he let me take it for the first 6 weeks and then put me on methotrexate. I also take anexiety meds, depression meds.and nuyancta extended release 2x a day it is a pain med. that is moraphine based, I have to take advil if needed in between for the break through pain. I take nexium 2x a day for digestive issues I've had for years so that helps my stomach due to advil use.I take soma a muscle relaxor 3x a day due to the pain. I don't think I could function at all if I did not take the meds due to the severe pain. When all of you talk about flare ups I have never not had a time in 21/2 years without being in pain. I asked my neuro. about remission and he said that would be just a good day where the pain is not as bad. I feel like a train wreck and like you my entire life has changed. I cannot work anymore after working in childcare for 31 yrs. I know that there is a reason and the Lord knows why and I just read and pray a whole lot to get through one day at a time. I have not received my disability yet, I go for a hearing in July and I pray that I will get approved the past 3 yrs. have been tough. I know some good will come out of this someday but just like all of you we don't know why us? I know there are plenty of people that have problems worse than what I deal with so I try to think things could be a lot worse. I have not been on line in a while I need to do a better job b/c I love reading and knowing that the support from this group is awesome!!! You hang in there and I will be praying for you and all of you. God be with you and I pray you feel some better soon. God's speed!!! nccarolinagirl Rena

Brenda, my thoughts and prayers are with you and yours at this time of loss. I am so sorry for you going thru all of this at once. wish i had some magic words...

Thinking of you and sending prayers your way,
Shwana

Brenda, I am so sorry to hear about the passing of your father. you have so much going on. I m sorry you are going through all this.

I will pray for you - you can do all things through Christ who strengthens you.

I am sorry to hear about your job, I would be the same way as my brain is mush with these meds!

I go to a counselor too and it has helped me so much. Maybe you can go twice a week during this difficult time? I also take an anti depressant.

I am thinking of you and please post as much as you can, we are here for you.