Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@bluebird6156

Because I would have to be out of work for two to three months. I cannot afford to be out of work that long and I cannot afford to work extra right now to save up for it because I am not operating at full capacity due to needing knee replacements, back surgery, and having RA. In two years I will receive a settlement due to my family and I can then be off work. I am also taking care of a disabled adult son…so a lot of responsibilities.

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I am so very sorry to hear that. Chronic, unrelenting pain is beyond horrible. I wish you the very best, and I hope you explore all options for getting your knees done sooner. God bless you.

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@grandmar

@karen00
Hi Karen!
Just wanted to check in with you to see how you are feeling and how you are doing?
Did the doctor have anything new to share with you regarding treatment?
Ronnie

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@grandmar Hey Ronnie, I’m having trouble writing back to you so here I go again. Nothing much happened at the doctors appts. the pain dr said I had neuropathy and that’s why my feet felt like they were on fire. Great! More things letting themselves be known! The primary care dr asked me what I wanted to do about the possible cellulitis still in my leg. She rarely makes decisions – you have to! I want my dr to work with me, but I don’t want to BE THE DOCTOR! Time for a change. Some other things going on, too. I’m feeling overwhelmed and in despair. Between mental & physical pain I’ve never cried so much. I still have to see a cardiologist, an orthopedist, and a new PCP. But I’m all doctored out!

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@karen00

@grandmar Hey Ronnie, I’m having trouble writing back to you so here I go again. Nothing much happened at the doctors appts. the pain dr said I had neuropathy and that’s why my feet felt like they were on fire. Great! More things letting themselves be known! The primary care dr asked me what I wanted to do about the possible cellulitis still in my leg. She rarely makes decisions – you have to! I want my dr to work with me, but I don’t want to BE THE DOCTOR! Time for a change. Some other things going on, too. I’m feeling overwhelmed and in despair. Between mental & physical pain I’ve never cried so much. I still have to see a cardiologist, an orthopedist, and a new PCP. But I’m all doctored out!

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@ Karen what are they telling you about wrapping your leg? Cellulitis can be really serious.

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@wsh66

@ Karen what are they telling you about wrapping your leg? Cellulitis can be really serious.

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@wsh66 Hey Stephen, they will wrap it and teach me how to do it. I know about cellulitis unfortunately, I had it last summer in the other leg – several times. I think it’s finally gone from the leg now (the one that’s so swollen). That subject, whether or not I still have cellulitis, is the straw that broke the camel’s back when it came to my doctor. She tells me “well what do you want me to do? If I keep giving you antibiotics you’ll get c.diff”. I don’t know what to do and I’m not going to tell you- I want to work together with you. Not have you ask me to tell you what to do! She’s always been a little too unsure. Sorry….I just had to vent!
Well, you never tell me how YOU are!

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@karen00

@grandmar Hey Ronnie, I’m having trouble writing back to you so here I go again. Nothing much happened at the doctors appts. the pain dr said I had neuropathy and that’s why my feet felt like they were on fire. Great! More things letting themselves be known! The primary care dr asked me what I wanted to do about the possible cellulitis still in my leg. She rarely makes decisions – you have to! I want my dr to work with me, but I don’t want to BE THE DOCTOR! Time for a change. Some other things going on, too. I’m feeling overwhelmed and in despair. Between mental & physical pain I’ve never cried so much. I still have to see a cardiologist, an orthopedist, and a new PCP. But I’m all doctored out!

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@karen00
Good Morning!
I am so sorry you are having such a difficult time.
I know you are so frustrated and sad. Moreover, people who do not experience constant discomfort (of any kind), cannot understand why you are so upset. They don't realize how exhausting it is (mentally and physically) and how it wipes you out.
I am glad you are looking into finding a new doctor. A good doc can make all the difference!
Are you comfortable researching for a new doc? If I can help you, let me know; I'll be happy to help you!
In the meantime, try to keep yourself occupied (according to your physical condition) with chores or things you enjoy. It is important that you keep your mind off your issues. If possible, try to get outside for a walk (or in my case, often a crawl….lol).
I don't know where you live or your agility, but I have found that walking (even around the house), even when in pain, helps with the pain. Also useful, swimming (or wading) in a warm water pool (like those in some gyms or PT facilities). When moving, it gets our endorphins going. Endorphins are nature's mood enhancement.
I hope I do not offend you with some of this. I am just trying to find suggestions to help you!
Have a good day!
Ronnie

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Hi there! I had a Harrington Rod put in my spine in 1973 when I was 15. Am now 60, and have been having lots of pain the past 15 or 20 years. Wondering if there is anyone else with the same problem, and what they may have done to ease their pain. Have a doctor's appt. today to either send me to a neurologist or a pain management clinic. Any help would be appreciated!! I'm in terrible pain!!!

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@coolestlady

Hi there! I had a Harrington Rod put in my spine in 1973 when I was 15. Am now 60, and have been having lots of pain the past 15 or 20 years. Wondering if there is anyone else with the same problem, and what they may have done to ease their pain. Have a doctor's appt. today to either send me to a neurologist or a pain management clinic. Any help would be appreciated!! I'm in terrible pain!!!

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If you get a chance to go to a pain management specialist be sure to ask about having a pain pump with a catheter running up your spine. It's perfect for long-term back pain. Instead of large doses of Narcotics you can get relief from 2 to 4 mg of Dilaudid every 24 hours. Drugs administered by the pain pump are 300 times more effective than drugs that you swallow. It's not perfect but it helps. Love and blessings.

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@karen00

@wsh66 Hey Stephen, they will wrap it and teach me how to do it. I know about cellulitis unfortunately, I had it last summer in the other leg – several times. I think it’s finally gone from the leg now (the one that’s so swollen). That subject, whether or not I still have cellulitis, is the straw that broke the camel’s back when it came to my doctor. She tells me “well what do you want me to do? If I keep giving you antibiotics you’ll get c.diff”. I don’t know what to do and I’m not going to tell you- I want to work together with you. Not have you ask me to tell you what to do! She’s always been a little too unsure. Sorry….I just had to vent!
Well, you never tell me how YOU are!

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You've got to find a new doctor or a second doctor that specializes in your kind of lymphedema. I saw my specialist today and she didn't know of anyone in your area but she's not familiar with your area at all. She pointed out to me that you and I have very different kinds of lymphedema with your is being caused by a heart condition. She said once your leg is healed that wrapping wood be important. Once your leg is under control and you're ready for garments to wear after the wrapping phase go to compression Guru. Com they are the lowest priced and most knowledgeable dealers for garments bandages compression socks the whole nine yards of everything that you can use. Please find a lymphedema doctor don't go on letting this get worse and worse. Cellulitis is no joke and if it goes septic on you it's real serious. If you can't find a lymphedema specialist maybe you should look at wound care specialist who can help you with getting your leg under control to where it's not weeping and then you can start wrapping it and controlling it. Life is a lot easier once you have this thing under control. Good luck love and blessings

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@wsh66

You've got to find a new doctor or a second doctor that specializes in your kind of lymphedema. I saw my specialist today and she didn't know of anyone in your area but she's not familiar with your area at all. She pointed out to me that you and I have very different kinds of lymphedema with your is being caused by a heart condition. She said once your leg is healed that wrapping wood be important. Once your leg is under control and you're ready for garments to wear after the wrapping phase go to compression Guru. Com they are the lowest priced and most knowledgeable dealers for garments bandages compression socks the whole nine yards of everything that you can use. Please find a lymphedema doctor don't go on letting this get worse and worse. Cellulitis is no joke and if it goes septic on you it's real serious. If you can't find a lymphedema specialist maybe you should look at wound care specialist who can help you with getting your leg under control to where it's not weeping and then you can start wrapping it and controlling it. Life is a lot easier once you have this thing under control. Good luck love and blessings

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@wsh66 Stephen, I cried when I read your note. I can’t believe that there is someone out there who cares enough to do what you’ve done for me. This is a hard time for me and I haven’t told you everything. I’m under so much stress right now that I don’t even remember what I have told you. Ok, here goes. My brother and I moved here in March. We both lived here most of our adult lives. My brother moved for a job. I got disability for fibro, RA, back issues. So I couldn’t support myself and moved in with my brother. I spent 7 years living near Greensboro, NC with him. When he lost his job, we decided to move back home to Cary. Not long after we came back, my leg started swelling. In the summer, they told me I had heart failure. I still haven’t processed it and am in denial I think. Not long after, I fainted and they found I had a clot in my lung. So now I’m on Eliquis for at least 6 months. Through all this, I’ve still got the swelling. I’ve been on antibiotics most of the time. The $ from the house sale runs out soon and I don’t know what’s going to happen to us. My brother has been working a part time job. He is too depressed to look for something else. I’ve tried to get a social worker. You have to call and leave pertinent info on a recording, and they get back to you in THIRTY DAYS! So these last 5 years have been hell. I got a perforated colon and almost died. When I was in a rehab facility recovering, my Mom (my best friend) got the same thing and died. I couldn’t get to her. Within a week of her death, I found out that my brother had called my doctor, trying to make a case that I should be in a nursing home for good. He had sold off my beloved piano without telling me. He couldn’t handle living with me, I guess. At that time though, when I came out of rehab, I was fine. I lived elsewhere for 2 years, then he saw me struggling financially and told me to come back. I’m afraid he’ll kick me out again! So I have all these physical issues, plus I don’t know if I’ll be homeless in March when our lease runs out. And I’m losing my faith. I’m on the verge of a breakdown. I had 1 a year ago and don’t want a repeat.
So there it is. Thank you if you’ve taken the time to read this all the way through. I appreciate it!

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I am new to this, but want to know if anyone knows of any place in Southern California who will treat pain caused by nerve clumping or I guess arachnoiditis? Every pain management I call want to reduce my meds without even asking what my chronic pain has been diagnosed as. I am reading that all these spinal nerve blocks have been linked to nerve clumping, which is what I have. I never got any relief from these injections but was told I would be denied pain medications if I didn't agree to these injections. Now I'm so screwed because even the same place who insisted on the injections will not even review my pain unless I agree to stop taking oxymorphone. I feel as if I'm being stigmatized for pain which injections, and or multiple spinal surgeries have caused me.
Thanks vwindsor62

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If you need long term pain care, until to die, get a pain pump. Nobody's nervous about the narcotics you get that way. You can't miss use them, sell them or overdose. Check it out.

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@wsh66

If you need long term pain care, until to die, get a pain pump. Nobody's nervous about the narcotics you get that way. You can't miss use them, sell them or overdose. Check it out.

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For more info, search posts by me, wsh66. I go into great detail about the pump.

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