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I am stuck At Sea and want to come home...
I am stuck At Sea and want to come home...
Broke a hip and now I've been on hydrocodone for 7 years and tomorrow is the first day without them. Just because my appt isn't until 06/09. I took the last of my rx this afternoon - about 8 of them. I have some tramadol that I COULD take but I just found out today that it interacts with Cymbalta which I also take. Even when to a walk-in clinic this afternoon for a new rx and it's a non-narcotic clinic. So they gave me a shot of Toradol. I do have what I consider real pain, but I don't want to live like this anymore. Please help. I'm scared to death. I have even thought of suicide so I don't have to tell my family and my doctor. I feel that "not" having these pills will make me want to kill myself and after reading the posts it just scares me even more. Please help me! What do I do this first day?
I still need help, please.......
Well, I guess the positive thing is that I haven't killed myself yet. But probably the only reason is that yesterday, even tho I'm not supposed too I took Tramadol - probably 10-12 throughout the day. Today I have had 5 Tramadol so far and no HCodone. I feel awful.... I want so bad to have some HC....So for two days, I haven't had Hydrocodone.....
But one of the things I don't get is that ..... I'm having withdrawals but also still have my pain. So I get that everyone wants to get off these pills because they are addicted but then they still have the pain. I've thought of ending it a long time ago because of the pain bc the HC wasnt working and then also after I figured out that i am addicted, like i said before, so i wouldn't have to tell anyone.
Anyway, It all started when I broke my hip at age 32. Then a few months later, I started breaking other bones. they never found what caused the breaking of bones, because there was never anything that caused the breaks. I just started breaking bones. They sent me to the Mayo Clinic for a week for all kinds of testing and also to Dallas for metabolic testing. So along with all the breaks, I never healed well. It was all really slow healing like diabetics do. It takes about 6-8 weeks for a bone to heal and mine took over 2 years to heal completely, therefore that was a long time to be on pain meds. I think in 2005, I was only taking like one 10 mg of HC and not even every day, so I don't think I was addicted back then. But nevertheless, i am now i guess. so then my lower back and hips hurt. My back "goes out" and puts me to the floor on my knees when I bend over-and the really bad pain lasts about week - then it's a bad ache with stabbing pains when I move and then the process starts all over again. Sometimes even taking the HC (about 8-11 a day) I have to go get a Stadol shot to get through the bad stuff. And I have had MRI's and tests and they can't determine what it is. So they prescribe like 3-4 HC a day. Now I'm going through withdrawals and pain and I just don't know how long this is supposed to last and also what to expect the withdrawal symptoms are. When does this get better? I really need someone to talk to - please, please help me. I have three kids and just after the first day of going without HC, my oldest daughter, 14, says why are you so mad today? Whats wrong with you? Why are you in such a bad mood?
Robert 325 - thanks for your response - I just need more - I have that appt on June 9th but I don't want to go if i can get past this withdrawal part. I totally wouldn't mind them giving me something for the "real" pain but I don't even know what's "real" anymore. I mean - alot of mornings my husband has to help me get out of bed. As far as getting control of my emotions, I have no idea how to do that right now. I have a fever, diarrhea, fatigue and BP is 160/100 right now. All of that is outweighing my control of emotions right now. And no, I don't feel like you are belittling my situation at all, just giving me your support. I just don't how to deal with this. I don't know if it's considered going cold turkey if I'm taking tramadol since i have no HC... But nevertheless..... I need support and help.
current medications I take: Cymbalta, xanax and lomotil (only as needed) Requip, Atacand for BP, Buspar, lots of exedrin, have access to tramadol (my husbands) and will have access to Lortab 7.5 Monday or Tuesday (not my RX)
Last edited by At Sea; 05-24-2008 at 02:21 PM.
Reason: added medications
Originally Posted by At Sea
It sounds to me like you probably need to take pain medication as you have described a much more serious situation with this post than the first one. Cut yourself some slack here. My concern is that hydrocodone is likely not the best pain medication for you to be taking. You are taking too many hydrocodone if you are taking 11 pills in a day as you describe. That is entirely too many. That adds up to 5500-7150mg of acetaminophen in a day depending on whether you are taking 10/500 Lortabs or 10/650 Lorcet. Anything over 4000mg of acetaminophen is a toxic dose for your liver. It will mess you up big time. Plus hydrocodone is too short acting a medication for your pain the way you describe it. I would suggest that you see a good pain management dr. You need a stronger pain med with less apap ... something that is longer lasting than hydrocodone. Even methadone would be a viable alternative for you. You could get some pain relief so you could deal better with your family. Sounds like you need a stronger pain med as I described and an anti-deppresant medication like you currently take.
I am really curious about the tests they did. What exactly have you been tested for??? Have they checked you for autoimmune disease??? Surely the Mayo Clinic did that. I have autoimmune problems and also moderate on an autoimmune disease forum. With autoimmune disease the body attacks itself to make it simple. Sounds like something is attacking your skeletal system ... possibly the bone marrow. Have you had any problems with low blood counts??? Have they checked you for Aplastic Anemia? Not trying to diagnose ... just asking. I know autoimmune diseases and you certainly have symptoms.
Last edited by Robert_325; 05-24-2008 at 02:45 PM.
I am stuck at sea
Hi, I just read your post and I understand what you're going thru. I get severe migraines and have been on morphine for years. The solution I found and this might work for you is: quick release meds do not work!! I went to a pain clinic and was told that quick release meds cause a yoyo affect. You take them and they work quickly but also are gone quickly. They don't last the 4-6 hrs and then you end up taking them more often or higher dose. They put me on morphine sulfate sl(stands for slow release). It stays in your system longer and after a few days you have a steady >>>>>> all the time.
Because of your medical condition you need to be on something and it's dangerous to detox yourself off of opiates. You've been on them for a long period of time. When I decided to come off the demerol, it took 29 days in detox where I could be monitored constantly. Please do not do this on your own. If you need help, ask for it. I'm here if you need me too. I've been where you are.
If you need to talk you can email me email@example.com
I wish you luck, sometimes there is a need for medications and yes they can be addictive but you have to weigh the addiction against the illness. If you take your meds the way they're prescribed there is less of a chance of addiction.
You're in my prayers
thanks for responding again.....
Here is my pain mgt story:
When all this first started, when I broke my hip and other bones they sent me to a pain specialist that was giving me a qty of 240 per month lortab 10/500 and they requested I go back every to renew the scrip. I did that for like 2 years. That's a lot of meds. They only did one type of injection for the hip pain and it didn't work. BTW, around the time I was going to quit seeing him, he got in trouble because he was caught taking the pain meds and also over-prescribing his meds. It was all over the news and newspapers. At that time, I heard he dropped alot of his patients.
After that, my back starting hurting and I went to an actual pain/spine doctor, she did an MRI and didn't find anything that would warrant my pain. So she put me in PT with no meds and after 4 wks of PT the therapist said lay on your stomach - well that is actually the ONE thing that if I wanted my back to go out - I can lay on my stomach and I can't get up. My back is out! I told her this and it went out within two minutes and when she came to help me up and found that I couldn't she put me on a tens unit for 30 minutes and ice and I barely walked out of there and didn't go back to her or the pain/spine doctor. I missed a weeks work. So I asked my doctor to recommend someone out of our area since we are very limited with pain specialists where I live (i think there is 3 or 4) of them. And when you've seen one, the other won't see you even if they are not in the same practice with each other. So he found one in Lubbock Texas.
The last time I saw this Lubbock dr. was March 26 2008. I had been seeing her since last fall, hoping/praying she could help. She thought it was the nerves along the spine in the lower back, and gave me steroid shot in the between discs and then when that didn't work, she burned the nerves on both sides of my back 4-5 vertebrae down in lower back. I still have the back pain and when I told her this when I went back in March - I told her not only did I have the back pain still, I had a migraine that lasted for 3 weeks and she said, "have we tried the patches - we should try them as they (Lidoderm Lidocain Patch 5%) scramble the nerves and confuses the pain waves along her spine. I said, "you mean the nerves that you burned on both sides of my back that are now not transmitting the pain" She said uuuhhh, like 'oh I forgot about that, I'll be right back and left the room. It's like - okay my nerves are now not even connected, so how can they be scrambled with the patch? And shouldn't we have done that as a first try? So she came back in and gave me a script for Norco 3 x day, 10/325 and I took them all within a week.
So this is where I am now. In early April 08, I asked my regular if I could just quit going to the pain specialist because I felt like it wasn't helping and also had created the migraine from the nerves being messed with which apparently is a side effect. He said yes, and gave me 100 tablets of 10/500 HC. They were gone within 2 weeks. So in May I needed a follow-up and my husband made me an appt for a follow up and another rx but I had to cancel it because my 7 yr old daughter had her awards ceremony at school that morning at the same time which he forgot about. So my husband called and got me another appt and it's June 9th, therefore, that's why I am out of meds and going through this right now. No - that's not why I'm going through this right now, I'm going through this because I let myself lose control over myself and my healthcare and trusted it to many doctors. I - myself am to blame - not for any other reason.
As far as the testing I've had several MRI's on back and hip - the last one being about 2 years ago. They did say I have degenerative disc disease and osteopenia but the #'s of osteopenia are not supposed to break bones. At the mayo clinic they tested, lots of x-rays, bone scan, metabolic panels, 24 hr urine sample, lots of blood work, bone density. I don't ever remember about having low blood count. And I don't remember anything about Aplastic Anemia, I mean hearing I was tested for it.
As an added note, I asked my husband to read all this that we've posted so he can understand.... I have a wonderful husband..... The ONLY problem is that he HATES to see me hurt and in pain. I think he totally understands what has happened with me.
Last edited by At Sea; 05-24-2008 at 03:55 PM.
Reason: An afterthought....
There are lots of us from Texas on this forum. It's amazing. I would imagine they tested for autoimmune disease in the blood work they did but I would ask. Next ... you need to get off the hydrocodone and get on a longer lasting pain medication. You are taking entirely too much acetaminophen. Ask the dr about it. This is dumb. They should know better than this. Just like the other post said, hydrocodone lasts a short time and then you hurt again. You don't maintain control over the pain. A long lasting medication will help to control it much better and will be healthier for you.
Sounds like you had a doozy of a pain dr. It happens. Never could understand someone going to college for 12 years to become a drug dealer. Lots of cash in it is the only reason I guess. But you need proper pain management and you aren't getting it from what I know. And I know all of the hydro is not in your benefit. Oxycontin is time released, methadone would work, several meds would work much better for you. I always remind people that you are the customer. If a dr is not helping you jump off on them. It's not fair for you to have to go through all of this. Tell them you want help! Ask about time released medication. Norcos are worthless for the type of pain you are having too. And most of all they need to find the cause of the problem, not just mask it with meds. You know that obviously. But MRIs only show certain things. They don't show all disease. That was why I was asking about autoimmune disease. I would also ask the dr about this possibility. No way I would go off medication at this point in time. You need some answers before doing that. Keep posting with anything new you can think of. God bless.
But what do I do..... I don't have any meds
So it sounds like I'm more than just a drug addict? I'm really screwed, huh. It makes me feel better, for some reason, but I still have the same problem. You said, not to go off the meds this way... I kind of don't have any choice in the matter. I don't have any medication, and I can't go to the dr until June 9th. What do I do? My husband said yesterday, he would even go to a walk in clinic and say his back hurt so he could get me some medicine until my appt. That illegal... I know, he knows that. But doing what I've been doing is not legal too. Taking more than I should...... So what do I do ???? I feel like I am just withdrawing myself through this. But it's Saturday...... What do I do?
Thanks so much!!!!
I agree with the above posts, and sympathize with your condition.
I also feel that at this point it is important that you stay on pain meds, and that you find a doctor who can genuinely help with the pain mngmnt. It just sounds like nothing has worked so far. But maybe all you need is to talk to a different doctor for some other insight and suggestions.
I know what you mean when you say your husband has to help you get out of bed. While I was going through withdrawls my wife had to help me get out of bed each morning too. Morning were always the worst time, in fact, they still are.
Hang in there, ok, at least until June 9. And talk to as many doctors as you need to till you find the help you need. And dont worry about any stigma of "doctor shopping". You have genuine pain, you're not a drug seeker, and that will be clear. But taking care of your pain is the most important thing, and with your current medical provider, it just isnt happening.
Call your doctor on Monday and explain to her that you are out of pills and that you need more. She should give you more, she knows that kind of pain you are in.
Sasquatch is right in that you shouldn't worry about anyone thinking you are a drug addict. That is nonsense. Pain meds are designed for someone like you. You have a legitimate health problem causing you severe pain. If your dr would help you on Monday that would be great. You probably know if they will or not before you call. I don't usually suggest to someone that they obtain pain medication, but in your case I think you should consider it. You will be a basket case by Monday. Just try to not take so many if you get some. You certainly have my sympathy. And it's sympathy, not pity. You need to find out what is wrong with you. And it may take another dr, or else you are going to have to light a fire under this one's a$$ so they help you. We get sick and we just let drs tell us the way it's going to be. They need to do something to earn our respect. I don't see that you are receiving a lot of help right now. Good luck and stay in touch.
So I guess...for now....
I want to say thank you for talking with me today. Maybe a french vanilla capp and a hot bath will get rid of some of the aches. My heating pad has been a friend to me today also. I don't know if my doctor's office is open on Monday or not.... Probably not since it's Memorial Day. What's one more day, huh? (I'm being sarcastic there, because I know that you who post to me know how long one more day will be) Look I have a sense of humor for the moment.
I'm sad that I'm where I am today. I really thought I could just go off of these (albeit not in this way) and not take anything. I guess I just figured that ppl who were addicted to pain killers - ended up quitting and then they take nothing after surgeries and so forth.
And I do see the bigger picture - the earthquakes, the tornadoes, all those ppl who are going through much more than myself...... I'm an just a speck in this world compared to what is really happening to ppl with real problems - that in itself sickens my stomach that I feel I should even be whining about w/d's. Seriously, ppl losing their only child and they themselves were crushed by bldgs and lived only to find that their husband and child have did. And I have symptoms of the flu, and crave something in a little yellow bottle with little white pills. Yeah - I see the big picture........ maybe if I keep reminding myself of this big picture...... I can get on the other side of the camera and start helping these people.
I really don't think I will have any other option than to go through this cold turkey. So I won't sleep much, huh? We have severe weather/thunderstorms coming through the area in a little bit anyway. I normally don't sleep when they come through anyway. Well I'm off to get that french vanilla capp and a hot bath before the storms hit.
Just an FYI - I know I will be UP and DOWN over then next several days and will needs tons of support...... Any words of encouragement would still be appreciated. I seem to be refreshing the screen for any new posts...... Just knowing there is someone out there listening to me and knowing what I'm going through is a great comfort. Doesn't do much for the wd's but it does wonders for my mind. Its amazing to me that there is more than one person out there that has read this and I have said something in my posts that makes them want to help me. I have never asked anyone for help on anything before. This is my first ever forum.
I know they won't give me anything until June 9th. My husband asked them if they would give me enough until my appt (since it was already time for a refill) and they said no they had to see me first, which I totally really do understand, kind of. I really think that since the drs. have never pinpointed what is causing this pain, that perhaps its not real, but that's my opinion.
Are my wd's going to be worse because of what I was taking and how much? I can tell you that the "real" pain right now is far outweighing the wd's, but when the bad wd's hit - they override the pain...... I'm a yoyo!
So with knowing what you know about me so far....... will I be lost "at sea and drown" before I see the doctor June 9th?
You will see me posting and asking for help all weekend. Right now, at this second...... I'm okay. I don't know why.... but I'm okay right at this very moment.
********************, I forgot - it's because I took a .5 Xanax about 45 minutes ago. Guess that would calm my nerves. Geez now I know why ppl accidently overdose. I'm am ssssoooo NOT going to make it through this.
People are trying to help you because we have been right where you are with the detox. Lots of our dependencies to opiates began due to severe pain problems as well. I know that was the case for me. There are tons of people on this forum who are the same. This is a great place to be when you are going through this. The xanax will help you too. You won't OD taking .5mg at a time. Don't worry. Hot baths are great for the restlessness you will experience. You will likely start having frequent trips to the bathroom. When this happens take Immodium as needed. It has an opiate base and will help your stomach. The trips to the bathroom also dehydrate you so drink lots of Gatorade. It has loads of electrolytes and will help your overall well being. Just let us know what symptoms you are experiencing as you go through W/Ds and we can give you suggestions that will help. Hang in there. You will make it. Good luck.
I feel your pain, I just want you to know that I am praying for you! Try to relax the xanax should at least help you in some way. Your more than welcome to PM me if you want to talk. I'm a mom too, and understand how the kids feel.... Good luck and I will be checking your post. Sounds like you got you a great husband to help out!
Add another prayer for you... I have lots to say on this subject, but just not right now. I'll be detoxing probably monday, in the same position! We'll get through it.... and, yes, you WILL get through.
3rd day - not doing well this morning
Before I went to bed, my temp was 99.5, its normally 97.6 or so. My BP was 142/98. Last night when I went to bed, I kept thinking "what if I have a seizure since I'm doing this cold?" doing this cold - not by choice of course. My heart was pounding and I was starting to have an xaniety attack. Somehow, I finally fell asleep.
When I first woke up I kinda laid around in bed trying to figure out what I felt...I felt okay. I felt a headache coming on ..... so I got up and two excedrin and now I'm up with the kids for the last hour-dad's still asleep (not being ugly here, he had an awful day with me yesterday and he needed his rest), actually he just came in the room so he's awake now. My kids have been arguing and now I feel another panic attack coming on. I took .5 xanax about 20 minutes ago. I feel like I shouldn't take the tramadol today..... I feel like mixing the cymbalta and tramadol and then the "cold turkey" thing is a double whammy for throwing me into a seizure.
Now I just sit here and wonder what to do. My regular pain is still here. One other thing is that if I stay in bed for longer than 6 hrs a night, my back hurts tons worse than just the 5 or 6. So laying back down is not an option. I don't really know what my options are.
Oh, in one of my earlier posts, I said that my husband has to help me out of bed.... that's not from the wd's - that's just from the regular pain. Someone had replied to my post, saying that during their wd's, they had to have help out of bed too. But no, mine is just from the regular pain.
I feel like ******************** and I've got to go right now, because my 7 yr old is crying about something.
So what do I do right now to keep me focused? I feel like my skin is crawling and have, you know what? i just figured out i don't know what else to say.
Good to know you got some sleep last night... I sent you an email, too. Its hard to focus right now, isn't it? Thats how I was too.
Update: I did as you all have suggested....
okay.... so I slept well and then felt fine when I woke up as I said. As the morning worn on my hips and back were killing me. I took another .5 xanax later this afternoon, some lomotil for diarrhea.... I don't know if that is from withdrawals since I get diarrhea immediately when my back pain "stabs" me. I've been on the heating pad all day (but that's normal) and then laid down, but didn't sleep though. I never took the tramadol today - just didn't want to cause any seizures as some of you have said. I was very, very, very lethargic today, couldn't move hardly at all, very stiff and hurt in hips and back. Anyway, the pain got worse all day long. Cried or got teary eyed when the back stabbed me... Also had several sneezing fits today with I'm glad the chair was behind me... That hurt like, yeah-like that! My husband felt so bad for me and he wanted to go to a clinic and get him an rx and then give it to me. I told him no, not to do that. Anyway, he went to take our step-daughter back home (this was our weekend) at 5:30 pm this evening and text me and said he was at a clinic and would be home in a little while. I just started crying. I told you in previous posts that he HATES to see me in pain... This man obviously would do anything for me. But I can also tell you that if just one of you said that I was a "real drug addict" - he wouldn't have gone to get me meds. I believe he'd be taking me in a whole different direction. So I have taken a 7.5 HC and just waiting for some of the pain to subside. And I'm trying to get a handle on the guilt I feel for my husband going to get meds for me.
I don't know whether I have had withdrawals today or not..... I felt the "real pain" even more so in both hips and down my legs that I have felt since I broke my hip. My back just hurts as normal. When I laid down earlier, my legs started that RLS stuff, but I have requip I take at night for that. One of my legs started like a muscle spasm for awhile but then went away. It didn't hurt - it didn't hurt - just annoying because I was freezing wrapped up in a blanket next to my husband. Perhaps that too a wd, I don't know because I've never went through this before. So I don't know what symptoms are related to the pain or wd's.
I asked him to read the "threads" and I believe he feels so fortunate that I started telling my story. Soon I hope he will register and receive support from this forum also. Because in the end, we all go through this together.
So this medicine will get me through till I get to the doctor. My appt scheduled for June 9th, don't worry - I'm not waiting until June 9th to talk to them, unless they absolutely can't see me till then. If they are open tomorrow, I'll be calling and telling them what's happened since Thursday and be adamant that I need to see them and it can't wait. (*any really helpful words or phrases I could use at the dr's office on my behalf from anyone would be appreciated *) I tend to never get to say what I really want to say or I get emotional cause I feel that they are not hearing what I'm saying.
You know - three times I went to the doctor's and told them that the pain was so bad that I kept thinking about suicide like every day...... Because of this:
1. I was so tired of looking for different doctor's to find a diagnosis (which they haven't)
2. All the money on copays and tests (we have insurance but it really sucks)
3. But mostly because of missing my kids games, programs, going to Six Flags which we have yet to do, just all in all - the fun stuff.
Okay - i get it - no diagnosis yet, but something to help me live for my kids, ages 7,11,13. All have birthdays this summer. The first one is Friday, she'll be 8 and we were supposed to go shopping. Didn't happen of course. Maybe tomorrow. She wanted to go to the mall this weekend so bad but I just couldn't. Yes - I'm suffering the pain - but they are just kids and look at all the pain this is causing them. That's what I meant when I was asking for any words for when I go to the doctor.... I think they don't hear me or either they don't think I'm serious. I was already on Cymbalta and then they put me on Wellbutrin and then Buspar. A dr found out I was on Wellbutrin and immediately took me off. I got the feeling they made a mistake having me on that but of course they didn't tell me that. I'm supposed to take 1 tab 2 x daily on buspar, but only take 1/2 a pill twice a day.
I read somewhere in the last few weeks now that social networking has become so popular, once you tell your story, or even answer in Yahoo answers or whatever networking site it may may, your life will be told and shared over and over again. You story will never get lost die. Hopefully, someday, someone will read my story and yours, and it will pay forward.
Okay - As some of you have guessed, I love to write.....This is long I know, I just keep thinking of things that I've left out and also wanted to give you a bigger picture of me and my life.
Most Importantly, read below:
Robert_325 - - - I have read alot of your posts on this forum and you are a blessing. I don't know your story, but I feel like I write alot of this directly to you.
Island Red - Chatting with you so so so late last night til you couldn't even see. you saved me last night.... I don't know what I would have done without you.
Money-Chick - I really still want to talk with you.... Tomorrow is the day for you I think for you to start.... I want to pay it forward like these people have done for me these last few days. I have no idea how I can help but I will try my hardest to support you.
LasVegasMom - I think I could really use your support about the kids, that just makes me so sad. At one point, my youngest walked to the side and with a limp mimmicking me..... Thank you for your prayers and comforting words.
Sasquatch - You and Island Red helped me decide to call on Monday (even tho I have meds now) I will doctor shop until I get someone to help me, I may be branded a "pill seeker" but I don't want to die, I don't want to be in pain..... I don't want an answer after my children are grown. I want to play with them.
Love to you all and God Bless You.
I am still At Sea but I the current isn't so strong that I feel like I might be able to actually come home.
Last edited by At Sea; 05-25-2008 at 09:13 PM.
Reason: missed an important word in there
At Sea ... you are so very kind in your posts. Thank you for such nice words. I really hate to see nice people having such sucky problems. You might try some Immodium in addition to the other if you are still having diarrhea. The opiate base in it helps. Take it as needed. Drink Gatorade for the dehydration the diarrhea causes. It has lots of electrolytes in it and will help you feel better. Keep taking the xanax to help you relax some. Hot baths will help some with the restlessness. Hot baths and hot showers always helped my crummy back some too. Glad you aren't taking the Tramadol. I don't think it's best for you.
I would suggest you remember that you are the customer with these drs. You have a right to demand they get you out of pain. Your medical history is such that anyone with any sense should be able to see what you are going through. Hell, they can't even fix you yet. They can at least get you out of pain. Point out that if they fixed you then maybe you wouldn't need any damn pain medication. There aren't any real "catch phrases" to use at the dr, but I would go ballistic if they hesitate to help you. Take your husband with you to the dr. I know he would go with you. I have no doubts that he would tell the dr like it is too. Don't worry or feel guilty about him going to the clinic for you. Had I been him I would have done the exact same thing. That what a best friend is supposed to do!!!
You are right about this being a family problem. Your husband is welcome here. So many spouses come on this forum only complaining about or sick of their "other half". I think it would be refreshing to see someone with compassion for their spouse on here for a change. I'm sure even reading your posts and replies helps him too. This is obviously very difficult for him as well as you. And the kids, well you just have to do the best you can. Sure they are just kids, and want to do things. But you are making yourself feel badly about something you can't help today. Take this one step at a time. You can't go to Six Flags when you can hardly walk. Just do the best you can.
I figure if your husband went to the clinic then he likely got enough meds to hold you a couple days if need be anyway. I would not take "NO" for an answer when you call the dr. If they don't want to call in some meds for you, then insist that they see you. They have to see their patients who call them on an emergency basis. Don't worry about how long your posts are either. Write as much as it takes to help you get things off your chest. Hang in there and God bless.
Last edited by Robert_325; 05-25-2008 at 09:57 PM.
Symptoms / Diagnosis / Tests Ordered
Today BP was 180/110 and it was the highest its ever been.
I was in an extreme amount of pain this morning. After reading this, please give me your thoughts on what they are looking for and do you think they are going in the right direction. I'm really interested in hearing anything someone has to say about the FM pain medicine Lyrica >> a narcotic.
The list below is what I gave to the dr today. At the bottom are the tests are some of the things she thinks are going on:
Cymbalta 60 mg 1 tab 2 x per day (1 in am; 1 in pm)
Atacand 12 mg 1 tab daily, increased from 4 mg to 12
BP has been 140-175 over 98-110
Buspar 1 tab 2 x per day
Protonix 40 mg generic 1 tab daily
Requip 1 mg at bedtime
Xanax 0.5 mg only take as needed
Lomotil only take as needed
Migrains – onset March 28th and getting more frequent - I’ve pretty much always had headaches but the migraines didn’t start until the pain specialist started giving me steroid injections in between the vertebrae and then she did burn the nerves on each side of my lower back.
Back pain: Lower middle back, center – always a bad ache, with stabbing pains when sitting, standing, bending goes down inner thigh to knee. Cannot lie down on my stomach without having my back going out. Back gets no better with rest or with movement/exercise.
With every right step forward pain radiates down to knee.
Last three weeks or so, I’ve had pain on the right and left side of lower back, like muscle spasms when I turn or twist and that hasn’t been a symptom
Pain in the morning is like 8-10 – stabbing in low back and a burning sensation (almost like muscles and nerves doing something together) it’s from the about the thigh to my shoulder but it’s the part of my body that is touching the bed, once I get up the burning is gone but I still have the constant severe aching and the stabbing pain.
Upper back on spine several vertebrae down hurts like at an 8 if someone touches it.
Muscular: My husband puts the icy/hot patches on my and it is painful when it goes on, pain is not just on the top skin layer, it feels like it goes through all the muscles, but I’m not sensitive to cold like walking outside in winter time.
I also get a “crick” in the neck/shoulder/down shoulder blade every couple of weeks and it lasts for several days, sometimes a week and a half.
Joints in very low back, hip (right hip is worse than left) groin pain, ankles, shoulders, right knee
Feet and ankles hurt really bad when walking barefoot
I am tired ….all the time, have no energy - everything seems like a huge, monumental task. It’s difficult to do the simplest things like cook dinner much less pick up dinner, give the youngest her bath, do the dishes etc. Does not feel like depression, my job and home life is not stressful right now, but that could change at any time. It makes me sad when my kids say, "do you feel good enough to give me a ride to my friends house?"
After seeing the doctor today:
Took me off Atacand and put me on Zestril 10 mg for blood pressure
Put me on Imitrex for migraines
The dr. said that I have been tested for "it" has been tested:
Adrenal Gland something or another
Auto-Immune Diseases (don't know which ones)
The doctor said that she believes I have do FibroM, chronic fatigue, depression, and more than likely arthritis but may even have rheumatoid arthritis. She put me on Lyrica 75 mg for the Fibromyalgia pain and said to continue the Cymbalta because that helps with FM pain.
They took 9 tubes of blood today and are testing for:
* renal function
* CBC w/ diff
* Sed rate
* B12, Vitamin
* C-relative protein, quant
* Folate (folic acid)
* Lupus panel
Diagnosis: ICD-9 codes are 790.6, 244.9, 281.9, 790.6
Thurs June 5th - I go see a pain specialist to see what the can give me along with the Lyrica and Cymbalta
Fri June 6th - Have MRI Brain w/ and wo contrast
Mon June 9th - Have MRI of C Spine, T Spine and L Spine
Thurs June 12th - Bone Density test
Thurs June 19th - Follow up with same doctor I went today
She was really concerned that I hadn't had an MRI after the 3-4 migraine medicines didn't work, she thought I should have had an MRI of my brain sooner I think. She said that if Imitrex didn't work for my migraine, my other doctor should have ordered an MRI at that point.
She took a lot of time asking about my upper back since I have numerous "cricks" and tension all the time and the fact that if someone touches the upper spine it hurts.
So ...... Whatch think about all this?
Hi At Sea,
Originally Posted by At Sea
Was wondering what happened to you. Glad to see you are getting some things done. I am pleased with the testing you have scheduled. It's difficult to make too many recommendations until you receive solid answers on your tests. But I will share with you what I think based on what you have told me.
First lets look at some of your blood work. Some of this is just general tests that they would do for almost anything they are looking at. But the Sed Rate, the lupus panel, and the CBC will all give results relative to autoimmune diseases which I am glad they are testing you for. Autoimmune disease also could explain some of the symptoms you describe like sensitivity to cold, the cold going deep into the muscle, pain in lower extremities when walking barefoot, problems with adrenal glands, chronic fatigue, depression, RA, aplastic anemia ( I suggested they test you for that remember???), lots of these things are autoimmune problems or symptoms of autoimmune problems. Fibromaylgia is also an autoimmune disease. I really believe you are going to be positive for autoimmune disease when this is all done. I base that on TONS of personal experience with these diseases. I have three of them. I know the symptoms, and you have several of them as mentioned above. It could also be a big factor in your bones breaking. I think it's pretty obvious the dr agrees with what I am saying or they wouldn't be doing a lot of the tests they are doing. THIS IS GOOD!!! Maybe they will at least find something so they can help you. We don't like to be diagnosed with an illness, but if they can treat it, then you can get SOME relief anyway. I'm happy for you in that respect. Something seems to be finally happening here for you.
The chronic fatigue makes all of this so hard. Again this is a major symptom of every autoimmune disease. Even when they make a diagnosis for autoimmune disease, it's tough to eliminate that problem. They can improve it, but it's not something that will disappear entirely. I know you would like for it to go away, but you will likely have to deal with some chronic fatigue. It's just the nature of the beast. SORRY!!!
I'm glad too that they are doing the MRIs on your back along with the bone density tests. You have a problem with your back obviously. I hate to even attempt a diagnosis with that. It's too tricky. I could elaborate on the test results when they come in, but I would be over-stepping my boundaries big time if I tried to second guess the tests. Let's wait and see what they say about your MRI results.
Things like the renal function tests in can show illness, but it can also tell the drs how your system is working as far as what medications can be used. Renal failure complicates things with what medications can be used. So I figure they are just checking your bodily functions in this respect.
You see the pain dr in two days. YEAH!!! It's about time. That should help you. Don't hold back when you see this dr. Lay it on the table and tell them how you feel. You need pain meds with what you are dealing with. Period. No questions asked. As far as Lyrica goes, it is a pain med for pain that is nerve related. It is okay for that specific type of pain and you likely have some pain that it will work on. It's a good medication for Fibromaylgia. But for lots of the pain you describe it is worthless in my humble opinion. You need additional narcotic pain medication. I promise you.
Some of your med changes are simply blood pressure medications and things like that. While 180/110 is very high blood pressure, it's not uncommon for someone having all these problems that you have to experience elevated blood pressure. I'm sure that is why they are playing with HBP meds to find what works best for you. I won't attempt to second guess the dr here either. They know best about this problem. Same thing goes with the headaches. That is out of my league. I agree with the MRI. They are the best test to find something like what could be causing the bad headaches. Of course the headaches could be coming from all the stress you are under with all of these health problems too. At least they can eliminate many things with an MRI. Glad they are doing that one.
All things considered I think the drs are making progress. They are testing for some of the specific things I asked about when we first talked. I am happy with what they are doing. You need help from the pain dr, but they have to do these tests too in order to find the real problem. Pain meds just mask the problem. You need them, but they have to find the problems to really help you in the longterm. With the progress they are making now, I would say to go along with them. They are making big steps forward in my opinion. This all takes time as you have lots of problems. They can only move so fast and not make mistakes. I am very pleased.
Last edited by Robert_325; 06-03-2008 at 10:32 PM.
questions re AT SEA --
I'm new to this forum and have read this entire "story". I have several questions to better understand what is going on:
1) are the respondants MDs?
2) is the forum monitored by an MD or nurse?
3) does anyone know of the link I could use to contact the moderator of the forum?
4) Is the woman really at Sea or is this just her user name?
5) Why didn't this woman go to an ER and ask to be attended to there? Could she not have been admitted to an inpatient facility where she could have been detoxed, tested, diagnosed and treated?
6) Why has no one suggested that her husband is enabling her and needs to better understand her addiction?
Richard ... The originator of this thread is not at sea obviously. That is her user name. It was suggested numerous times that she see her doctor. Respondents are not MDs, the forum is not monitored by MDs. People share their experience and attempted in this case to provide support and suggestions to a person who was beside herself with confusion. You are making too much of out of people attempting to help one another.
Last edited by Robert_325; 06-04-2008 at 11:03 AM.
Robert_325, I just wanted to say, you always give good sound advice, you're a real asset to this site, keep up the good work, I for one appreciate you giving your time, hard work, and sharing your knowledge!
Cats Meow .... I appreciate the kind words. Sometimes people come on this site and attempt to analyze everything too much and they don't see the simple purpose of this forum. We are not attempting to be MDs or anything close. But when people log on here freaking out, and most of us have been there, we are simply trying to be supportive of each other. I don't think that is so bad.
I was not being critical of your support. Indeed, support is extremely important as there are just some things in life that are too difficult to get through alone.
That said, with over 30 yrs in the therapy and substance abuse field, I can tell you that I've seen many people ask for help by saying that they are suicidal. Then they kill themselves. Don't confuse her desperation w/the "simple purpose of this forum". The forum may be simple, but her pain is not. Email support is nice, but she's still "alone", drifting at sea, as it were, and her husband is not able to assist appropriately (faking an ailment in the ER for her meds is just enabling her and delaying the real help that she needs). As long as she has all those chemicals in her brain she is not going to be able to make intelligent and clear decisions....not her fault....just the ******************** in her bloodstream. I was not suggesting she go to her MD, but to the ER where she could get on a fast track to detox and health...both mental and physical. I'm not "over-analyzing", I'm advising that some people may have problems that need more than an email community.
No need to be defensive....I think what you all do is great. I'm just saying that there are a lot of people out there who WILL commit suicide and all the well-meaning emails in the world won't help. You'd feel terrible if someone killed themselves during your email "relationships".
To the extent that a forum like this encourages people to "open a can of worms", it seems (to me) that there should be some sense of social responsibility to go the next step, right? It would be nice for someone like any of you to develop referral sources by city and to assist folks in getting community help as well. For all we know, her MD may be a lousy one and not really know what to do with all the test results. If that were the case AS needs a higher level of care...and, believe me, she would appreciate having it. If her MD is good and gets her the medical assistance she needs, she still will need follow up in the area of her addiction and mental health...or you will be talking w/her again in the months to come. Oh, and her husband will need to "grow" through this experience with her so that he doesn't inadvertantly sabotage her at a later time. If you've done this before you know what I'm talking about.
Finally, you signed off rolling your eyes. That's rude and disrespectful. Remain open to others' input -- no eye rolling.
Keep up the good work...
PS: I don't know what city AT SEA is located, but if any of you want assistance in developing referral sources, let me know. I might be able to get you started.
Richard ... We make the point here regularly that addiction can play tricks on us, making us believe we have more physical pain than what we really have. Most of us that respond to posts are former or recovering addicts with some of us having many more years clean than others. Some of us also have lots of experience with disease and related problems as well. We almost always advise people to clean up first and foremost. I am also involved in recovery professionally. We refer individuals to links where they can find help with recovery when conditions are applicable.
Recovery from addictions is great. It changes lives. But at the same time it doesn't address the entire spectrum of problems for those with medical conditions requiring the use of narcotic medications or other medications and treatments in order to survive. It isn't always the answer to first be admitted into a detox because one takes pain medications.
This patient has all kinds of problems that will not be addressed in a rehab facility. Sadly she needs answers to other issues before addressing her dependency to opiates. Have you read the entire thread??? And still you think she needs to first go into rehab??? Wouldn't we feel badly if we directed someone to rehab and then found out later that they have a medical condition that caused fatal problems for them that should have been addressed prior to rehab? I don't know all of her conditions. Can you see all of them by these posts? Who are we to dismiss all issues except opiate dependency because we are in the recovery field? What we have suggested is that she seek medical attention. That is the proper thing to suggest in this case.
I appreciate your position and concern. I really do. But detox is not always the first thing that needs to be done in all cases. The eye roll was only because of the nature of the post seemingly intended to be questioning all respondents' positions ... that the moderator needed to know that we are telling people the wrong thing in your opinion. This is not a "simple" forum and not all problems can be handled with a "simple" drug detox. I will continue to contend that At Sea has received the proper direction.
Last edited by Robert_325; 06-04-2008 at 03:58 PM.
i'm be no means a professional in this field, i only have personal experience. i feel compelled to add that because of robert, who really seems to know the right things to say, and the other people here i've come farther than i ever have. just know that i appreciate that.
At Sea - Its been awhile since my last post - Robert_325 pls read
So..... I came on this site for support and direction and I received it from so many people it was just unimaginable. The support, the caring the direction…. they just pushed me to seek the right way to handle the pain, the doctors and most importantly my health.
The last post I wrote looks like 06/03/08 and but then RStock2 gave his/her opinion and I got too scared to post anymore. The week after RStock2 posted I got the results of my MRI of the brain and the spine. At a time when I still needed support, I was too afraid to say any more because of what RStock2 said. So now it September 13, 2008, like three months later that my husband and I have been going through this alone because of RStock2’s post.
So here it is. This is what has happened the last three months……. ..
Robert_325 - You were correct that something was really going on and they needed to find out what it was so they could treat me correctly. They found a pinealoma tumor. For the readers who don't know about it - like I didn't......and wish I still didn't .... its pretty much dead center in your brain and depending on which doctor you ask - "inoperable" is used as frequently as “operable”. And TA DA! it effects your Central Nervous System in all kinds of ways, can influence motor skills, pain, confusion, There are four types of pinealomas and none are great to have. There is a 90-95% survival rate on the up side after you go through chemo and radiation and surgery.
The Lyrica has worked liked magic on all the nerve pain I have. My husband doesn't have to help me get out of bed in the morning anymore. Hooray! I still have ALOT of pain in my lower back and I'm still going to the pain specialist that I don't particularly have much faith in (however until I find a new one, I’m stuck with her) I gave her office the actual disc with the MRI images on it and the reports and I have had two office visits since and she still does not have the hard copies in my file, therefore basically she is treating me only for what I tell her and not what the MRI shows.... which is two curves-one on c-spine and one on the t-spine with discs bulging and also the degenerative disc disease which is compressing the nerves. So she continues to give me the steroid shots in my lower back and I'm not supposed to have steroids because it can contribute to bone loss and remember I break bones easily with no trauma. So - basically she doesn't hear me. Nothing new there. I'm taking the hard copies of my reports on Monday when I see the pain specialist so she can treat me for the actual issue, not guessing from what I'm telling her which has not worked that past year. She gave me a prescription for qty of (15) of 7.5 HC 2 x a day as needed to last for 30 days. Oh - and the neuros don't want me to take narcotics for the back pain because it can cause rebound headaches - and when I told my pain specialist this, she said, "well, anything can cause your headache" and gave the script for hydrocodone. I just don't know about this woman. I asked her if there was anything else that she could give me or do for me to not interfere with the migraines or possibly make them worse and also asked if there was a longer acting medication she could give me. She said, "no, not really, this is the only one." I really feel that there has to be more to being a pain specialist than injections and hydrocodone. But perhaps I have no idea what I'm talking about.
At the end of June, I spent four days in the hospital for IV therapy trying to get rid of the intractable migraine I had since March 27th (they said it was just one lllllloooonnngggg migraine-not several) and the different IV meds didn't work at all. It's a long story but after the hospital stay, I had very strange things happen - they don't know what caused it but I lost a lot of my motor skills for about a month and it’s off and on now. For several days, I was also hallucinating which played havoc on my nerves and made me have panic attacks. My memory totally stinks now too. So much for me being a Type A personality! Anyway, I had to relearn how to put food from my hand to my mouth, type, use the computer, the regular home telephone, texting, calling on my cell phone, etc. It’s been a nightmare, like I didn't have anything else to do or think about, right? So I've been off work for since the end of June and have no idea when they will let me go back to work. Still have lots of headaches and migraines too but am on Treximet for it and it seems to help for 90% of the time.
As for the brain tumor, the neuro here where I live doesn't feel comfortable treating me since they are very rare tumors, esp for females. He has transferred my care to a state of the art hospital in the state which I live about 3 ½ hours away. I have seen a neurologist once there so far the first part of August. I am to have another brain MRI this month and they will compare with the 1st one, then I return to the hospital and meet with a neurosurgeon and my neurologist the first week of October. The neurosurgeon heard of my case and asked to personally meet with me. I don't know if I should feel privileged or scare ****less. The neurologist is great that I saw, we (my husband and I) just talked for about an hour and a half and he LISTENED! He came up with a plan to see what and who and what can help me the most and when I call to ask a question, HE CALLS me back - amazing! Not his staff - but him. And he will talk forever to you like you are the most important patient he has.
I have to go for cognitive testing at the end of October to see what’s going on with my motor skills. They don't know why that all happened when I got out of the hospital, it was like having a TIA that lasted for a month. But they said if it was a TIA it would have only lasted a day or two. So they want to see if they can pinpoint the area in the brain (I think) that's messed up - well besides the part with the tumor - lol...... oh, and no one can tell me if the migraines are being caused by the tumor either. I guess we find out later. So I am hoping by the 2nd week of October we will have some definitive answers.
So that's about it. The headache started March 27th and it’s been a long, stressful wait for some answers. I had no idea that my pushing my doctor for all these tests would lead me to this place in my life.
It's scary, it's sad and it's a lonely place to be. I’m so disappointed in the person’s post that contributed entirely to me leaving the forum without all the facts. I really could have used the support of this forum the last three months and only now do I have the courage to come back to let the people who supported me know I’m still here, lonely, discouraged and forgotten, but here none the less. Robert-325, thank you, you are a blessing. I’m so glad you stood your ground with RStock2 and explained further my situation. I look forward to hearing from you and everyone else. God Bless You All.
Wow.............. life is not being good to you right now. I don't even know what to say. At least it does sound like you have a doc in your corner now.. that is a plus.
Not sure what happen with your last post but there are a-holes everywhere.... l would suggest you take what you can get from this site. Blow off what does not fit. Come, vent, take the support you can get and ignore the ones off key. I have been coming here for about, no, two months and one day. I have found it very supportive and feel very close to a lot of folks here. Never met one of them but none the less I feel I can come here and vent, cry or just chat. I also get great advice... sorry I have none for you hun... wish I did.
I can only read and pray for you since you problems are way over my head. I do want to do something for you and I thought of something other then prayer. Go to You tube.... join if you have not. Its free. Put in "the secret" and watch a few of those video's. I can bet at least it will give you thought..... maybe help you to stop worrying about things you have no control over...
Comes back.. will be looking for your post
Sunday, 11:25 PM
I just wanted to post before I go to bed and say thanks to you who have let us know how Robert is doing. It's good to know they are okay.
My husband is going to the pain specialist with me tomorrow for moral support. Sometimes I wish I could just be aggressive enough to make her hear me. I almost thought about canceling, I keep telling myself I'll give her one more visit. It will be interesting to see what medically she will do when I give her the results tomorrow. As I said before, I'm taking hard copies of the results so she can't say "they aren't in here."
I'm feeling kind of discouraged today, I always do right before I go to her. It's a good $150.00 every two weeks or so, with the pain no better than last year when I began going to her.
I'll write more tomorrow as time allows.
Thanks for listening.