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.

@grandmar

@phariss022
I dealt with Fibro for many, many years until I came upon things that helped me. The regimen took approximately 2-3 years for it all to come together to help me. It's alot, but it worked.
1. I went on a low does of Amitriptalyn (spelling?), about 10 mg. This was used not as a psychotropic drug but as a drug to help me get into a deep, healing sleep.
2. I started aquatic PT. The warm water worked wonders.
3. I went for a THERAPUTIC massage every other week.
4. I went to a chiroprator in between.
5. I lost weight on Weight Watchers.
6. I started walking. My hubby actually had to drag me around until I could do it on my own.
7. Once I was able to walk on my on, I started to exercise….tread mill, weights, etc.
Now, although I no longer have Fibro pain, if someone presses in on one of those points, ouch!!
I did all this while I worked full time and went to graduate school.
Hope this helps.
Ronnie (GRANDMAr)

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@grandmar yes those pressure points still hurt regardless of what we do.

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@pharis022

I have been dealing with Fibromyalgia for many years and have managed to rideout each episode. However, over the last few years the pain has increased, my nervous system is in overdrive and I have trouble performing the simplest of chores. I am in a constant flight or fight mode an unable to relax, socialize or enjoy any aspect of my life. Doctor to doctor and all they can tell me is you have FMS, sorry. I have had many types of injections and a spinal chord stimulator implanted. I live in the San Diego area and can not find a doctor who will take an interest in helping to improve my quality of life. Has anyone had success with any kind of treatment?

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Cymbalta and massage has helped a lot for me.

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@ckeys

@davidstory. I truly feel for your struggles. I was an active local missionary when my cancer hit. The pain and I’m immuno-compromised state it left me with, made it impossible for me to continue my works. But I prayed to God, certainly this wasn’t all he had for me, right?

As much as we feel “called” to something, God sometimes has another plan for us. Our job is to open our minds and hearts to see what that might be given the current circumstances. I would encourage you to open your mind and your heart to other opportunities, specific ones you could be effective in given your current disabilities. Got is not disappointed in you!! Keep speaking His truth. You might also seek out other pastors who have experienced disabling pain, cancers, other health problems that have caused then to have to change their mission plans. You are in my prayers.

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@davidstor – I loved @ckeys statement – "God sometimes has another plan for us … open your mind and your heart to other opportunities.'

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@ckeys

Cymbalta and massage has helped a lot for me.

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I tried Cymbalta, Savella and Lyrica for the Fibro, but the side effects were intolerable.

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@harleymama

@teress221 I had two kidney surgeries. A couple of years later I developed chronic pain in my low back, sacrum, buttocks, hips and thighs. I've had two surgeries on my hip thinking that was the source of this new pain. After three years of therapy, injections, and testing, insurance change, having to change my therapist, etc. A fresh set of eyes and new perspective has come to light. The theory is that the kidney surgeries caused scar tissue and nerve entrapment, the source of my pain. I wonder if the chest tube caused the same perfect storm inside of you. The recommended treatment has been myofascial release. This is done with manipulative therapy. I had been getting a weekly (and extremely painful) deep tissue massage, but that's not what myofascial release entails. It's a very light touch. The first time I thought it was voodoo and what kind of quack is this. Laughingly I asked what I could expect over the next few days. She said I wasn't going to like her very well. Actually I HATED her over the next few days. I couldn't walk more than 90 seconds at a time. Then I got back to my baseline. While my husband was away from home for a vacation, I had my girlfriends over for a board game night. I spent the day cleaning my house and cooking and setting up card tables. By that night, I was having another flare in my pain. Back to 90 second walks again. I've seen this therapist a total of four times now. I can't believe how much improvement I've made since my first time!! One day last week and one day this week, I woke up with ZERO pain. Usually I toss and turn trying to get comfortable and when I can't take it any more I get up for the day. The first time I woke up with no pain, I literally thought I was dreaming. I was looking at my alarm clock thinking this is such a wonderful dream and I don't want to wake up, wishing myself back to sleep. Then my alarm went off and I realized I was awake! Of course my pain started up again once I was up and moving but what ecstasy to have those few moments after years of constant pain. I am a believer in this massage therapist! Problem is her availability. I only get in once every other week or so. There is an intensive program in Sedona AZ that I'm looking into. You get 3 hours daily of this therapy and it's 2-3 weeks long. I am so anxious for this pain to end and I am seeing a light at the end of the tunnel. I'm ready to sprint to the finish line! I am trying to figure out how I can make it work with my finances, insurance, and time off from work. If you haven't tried myofascial release therapy, find a John Barnes trained therapist and give it a few sessions. They should be able to tell you at the first session if they feel scarring and can help you. I mention John Barnes therapists because many massage therapists believe they're trained in myofascial release but it's not the same thing. I've received both. There's a difference. If you're close to Sedona, I've heard that you can book appointments for a single session instead of the intensive program.

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Does your therapist happen to know how I can find a masseuse who practices this technique in the San Diego area?

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@pharis022

Does your therapist happen to know how I can find a masseuse who practices this technique in the San Diego area?

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There is an Expert level MFR therapist on Santo Road in Tierrasanta. His name is Brian McDonald. The business name is Adjust Physical Therapy. 858 715-3878

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@grandmar

@karen00
Hi Karen!
It's a pleasure to 'meet' you!
I am glad you find my posts humorous and my attitude great.
Believe me, I have my moments just as we all do.
In many ways, we who suffer from chronic and acute pain are isolated since most of us do not have anyone who can relate.
And as you know, if you can't see the pain, there is none. LOL!
I am very lucky to have a caring and wonderful hubby who takes good care of me. He doesn't let me do anything or go anywhere by myself.
I have fallen 3 times and he worries about me.
Truth is, I could use some time to myself, even if it means staying home in my chair, which I do a lot lately!!!
My pain and agility became worse soon after I moved here 4, almost 5 years ago.
I was lucky that I found a pain doc to help me and I would have freedom for 5-12 weeks at a time.
It was wonderful and I was able to go and do what I want.
But sadly, I have not made any friends.
The community is mostly young families and those who are older still work…..I don't.
For the last year, since the shots stopped working, I've stayed home a lot.
So I do understand the loneliness and isolation.

Hey, tell you what……..we can't ring each other's door bell or go for lunch, but we certainly can write each other.
I don't sleep very much these days, so whenever the mood strikes, just write!!!!
I will be having my surgery on Monday and I don't know if I'll be home on Tuesday or Wednesday, but I will take my tablet.
Don't know how the connections will be, but we can try.

Have a pleasant evening and again, write whenever you want……
Ronnie (aka…..GRANDMAr)

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@grandmar. Hi Ronnie! I’m wondering how you are doing – and that awesome hubby of yours. I have been remiss in not getting back to you re: your surgery. My only excuse is that it’s been a real hard fall. Been hospitalized a couple of times. Last time a few weeks ago they found a clot in my lung and told me I have heart failure. First I was in denial- well, I think I still am. Anyway, I hope you can get back to me with good news! ….write soon….Karen

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@karen00
Hi Karen!
Thank you for checking up on me! You are very sweet, especially considering all you are going through! I am so sorry to hear about the issues you are having. Seems like once something goes wrong there is a domino effect and everything collapses.
I am actually doing well. I went for my 12 weeks post op check up and the doctor is very pleased with the healing process. I am about 3 months ahead of schedule as far as the healing is concerned. I am beginning to grow new bone where he did a graft (of some sort). Pain is pretty much gone with regards to what I was experiencing.
Sadly, other things have popped up causing other issues, some painful (but livable), some not. I appear to be losing the strength in my legs and the flexibility in my feet. My neurosurgeon has been trying to figure it out since the issue started in June, but he just can't. Next step is to see a neurologist. It is amazing how poorly they are rated around here! I am very adiment about finding doctors well rated in multiple sites. Although my surgeon gave me a list of 4, one, who is the best will not be available until SEPTEMBER!!! Another I have to try to call back. I waiting 20 minutes to speak to someone for an appointment then I hung up. The rest of those I have tried either don't take my insurance or has narrowed down their speciality. It is really depressing to have such a difficult time.
Anyway, more importantly, tell me all about you and what the docs are doing for you or are going to do for you. I am sure the diagnosis is weighing on you. Have you gotten a 2nd opinion? Try your best to relax and deal. If you can't, try to find yourself a good therapist to help you! I am really big into therapy!!!!
Feel well!!!!!
Ronnie

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@grandmar

@karen00
Hi Karen!
Thank you for checking up on me! You are very sweet, especially considering all you are going through! I am so sorry to hear about the issues you are having. Seems like once something goes wrong there is a domino effect and everything collapses.
I am actually doing well. I went for my 12 weeks post op check up and the doctor is very pleased with the healing process. I am about 3 months ahead of schedule as far as the healing is concerned. I am beginning to grow new bone where he did a graft (of some sort). Pain is pretty much gone with regards to what I was experiencing.
Sadly, other things have popped up causing other issues, some painful (but livable), some not. I appear to be losing the strength in my legs and the flexibility in my feet. My neurosurgeon has been trying to figure it out since the issue started in June, but he just can't. Next step is to see a neurologist. It is amazing how poorly they are rated around here! I am very adiment about finding doctors well rated in multiple sites. Although my surgeon gave me a list of 4, one, who is the best will not be available until SEPTEMBER!!! Another I have to try to call back. I waiting 20 minutes to speak to someone for an appointment then I hung up. The rest of those I have tried either don't take my insurance or has narrowed down their speciality. It is really depressing to have such a difficult time.
Anyway, more importantly, tell me all about you and what the docs are doing for you or are going to do for you. I am sure the diagnosis is weighing on you. Have you gotten a 2nd opinion? Try your best to relax and deal. If you can't, try to find yourself a good therapist to help you! I am really big into therapy!!!!
Feel well!!!!!
Ronnie

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@grandmar Hi I was reading this post and glad to hear your doing so well keep it up warrior.sorry to hear about your legs and feet now hope the neurologist will be able to help you please f ve us an update .

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@grandmar

@karen00
Hi Karen!
Thank you for checking up on me! You are very sweet, especially considering all you are going through! I am so sorry to hear about the issues you are having. Seems like once something goes wrong there is a domino effect and everything collapses.
I am actually doing well. I went for my 12 weeks post op check up and the doctor is very pleased with the healing process. I am about 3 months ahead of schedule as far as the healing is concerned. I am beginning to grow new bone where he did a graft (of some sort). Pain is pretty much gone with regards to what I was experiencing.
Sadly, other things have popped up causing other issues, some painful (but livable), some not. I appear to be losing the strength in my legs and the flexibility in my feet. My neurosurgeon has been trying to figure it out since the issue started in June, but he just can't. Next step is to see a neurologist. It is amazing how poorly they are rated around here! I am very adiment about finding doctors well rated in multiple sites. Although my surgeon gave me a list of 4, one, who is the best will not be available until SEPTEMBER!!! Another I have to try to call back. I waiting 20 minutes to speak to someone for an appointment then I hung up. The rest of those I have tried either don't take my insurance or has narrowed down their speciality. It is really depressing to have such a difficult time.
Anyway, more importantly, tell me all about you and what the docs are doing for you or are going to do for you. I am sure the diagnosis is weighing on you. Have you gotten a 2nd opinion? Try your best to relax and deal. If you can't, try to find yourself a good therapist to help you! I am really big into therapy!!!!
Feel well!!!!!
Ronnie

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@grandmar Hey Ronnie, I can’t believe the difficulty you’re having getting a neurologist! September appt? Well, now that I think about it, I made an appt with my primary care doctor for a well woman visit – the first appt they had was 13 months away! Over a year – just for a physical! It’s all crazy. I’m so sorry about why you even have to see a neurologist. Are you having trouble walking? Maybe you should make the appt in September. You might need a 2nd opinion from him if you get to see someone else first. You said the doctors were poorly rated. Can I ask where you live?
So, when I fell I already had cellulitis from my knee down. That same leg took the brunt of the fall. I landed right on my knee. I haven’t been right since. Up all night last night crying in pain. I never went to sleep. I can barely walk. It’s a dilemma- first I have to get rid of the cellulitis before they can do anything to knee. And it won’t go away. Plus I have lymphedema in that leg which probably caused the cellulitis. So my right leg has lymphedema, cellulitis, and a bum knee. It’s complicated. I have to get a lymphedema physical therapist who will make swelling go away. Plus I have to be really strict about the sodium I eat. Now that’s hard! You’re right about therapy-I agree! Everyone should get their own therapist when they’re born.
Do you read.? I’m thinking about joining Kindle unlimited. Reading is good therapy!

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@karen00
Good morning!
Ouch! Your issues with your leg sounds painful!! What sort of a doctor cares for this? Has the doctor given you pain meds?
I am a big believer of being your own advocate. I also am a huge believer in doing research to find the best medical care I can. My docs have given me referrals for docs and when I research the doc on multiple sites, the reviews are horrible. I live in Central Florida approximately one hour between Tampa and Disney. How about you?
Yes, walking is a huge issue. My legs don't work well and neither do my feet. The reason I need a neurologist is because my neurosurgeon is concerned about some kind of degenerative disease or something even more serious. It worries me but I have to have faith I will find the best doc possible to care for me.
No, I don't really read very much anymore. I had shingles about 5 years ago. The virus, not the rash, went into my eyes causing a temporary palsy. It did, however, leave me with some visual issues. Even with glasses, my eyes eventually start to sway. I have come to deal with it.
Not great for a person only 63 years old.
So, I try to enjoy and do what I can while I can.
Feel good!!
Ronnie (GRANDMAr)

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@lioness

@grandmar Hi I was reading this post and glad to hear your doing so well keep it up warrior.sorry to hear about your legs and feet now hope the neurologist will be able to help you please f ve us an update .

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@lioness
Thank you!

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@grandmar

@karen00
Good morning!
Ouch! Your issues with your leg sounds painful!! What sort of a doctor cares for this? Has the doctor given you pain meds?
I am a big believer of being your own advocate. I also am a huge believer in doing research to find the best medical care I can. My docs have given me referrals for docs and when I research the doc on multiple sites, the reviews are horrible. I live in Central Florida approximately one hour between Tampa and Disney. How about you?
Yes, walking is a huge issue. My legs don't work well and neither do my feet. The reason I need a neurologist is because my neurosurgeon is concerned about some kind of degenerative disease or something even more serious. It worries me but I have to have faith I will find the best doc possible to care for me.
No, I don't really read very much anymore. I had shingles about 5 years ago. The virus, not the rash, went into my eyes causing a temporary palsy. It did, however, leave me with some visual issues. Even with glasses, my eyes eventually start to sway. I have come to deal with it.
Not great for a person only 63 years old.
So, I try to enjoy and do what I can while I can.
Feel good!!
Ronnie (GRANDMAr)

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@grandmar I didn't know you had shingles Ive never had them but a friend had them on her head it effected her eye.Dont forget to get your shingle shot now have a good day.

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@grandmar

@karen00
Good morning!
Ouch! Your issues with your leg sounds painful!! What sort of a doctor cares for this? Has the doctor given you pain meds?
I am a big believer of being your own advocate. I also am a huge believer in doing research to find the best medical care I can. My docs have given me referrals for docs and when I research the doc on multiple sites, the reviews are horrible. I live in Central Florida approximately one hour between Tampa and Disney. How about you?
Yes, walking is a huge issue. My legs don't work well and neither do my feet. The reason I need a neurologist is because my neurosurgeon is concerned about some kind of degenerative disease or something even more serious. It worries me but I have to have faith I will find the best doc possible to care for me.
No, I don't really read very much anymore. I had shingles about 5 years ago. The virus, not the rash, went into my eyes causing a temporary palsy. It did, however, leave me with some visual issues. Even with glasses, my eyes eventually start to sway. I have come to deal with it.
Not great for a person only 63 years old.
So, I try to enjoy and do what I can while I can.
Feel good!!
Ronnie (GRANDMAr)

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@grandmar

I'm so happy to hear that your back pain is better and you're healing well. I'm sorry to hear about your leg and foot problems. Since you live in Florida, can you get your neurosugeon to refer you to the Mayo Clinic there? Perhaps you have already tried, but if not I recommend it. Also consider whether traveling to another state to get a diagnosis and see an excellent doctor sooner would be a good thing to do. I too do a lot of research on physicians before I go to them. I hope you find what you need and get relief from your leg weakness and ankle problems.

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@grandmar

@karen00
Good morning!
Ouch! Your issues with your leg sounds painful!! What sort of a doctor cares for this? Has the doctor given you pain meds?
I am a big believer of being your own advocate. I also am a huge believer in doing research to find the best medical care I can. My docs have given me referrals for docs and when I research the doc on multiple sites, the reviews are horrible. I live in Central Florida approximately one hour between Tampa and Disney. How about you?
Yes, walking is a huge issue. My legs don't work well and neither do my feet. The reason I need a neurologist is because my neurosurgeon is concerned about some kind of degenerative disease or something even more serious. It worries me but I have to have faith I will find the best doc possible to care for me.
No, I don't really read very much anymore. I had shingles about 5 years ago. The virus, not the rash, went into my eyes causing a temporary palsy. It did, however, leave me with some visual issues. Even with glasses, my eyes eventually start to sway. I have come to deal with it.
Not great for a person only 63 years old.
So, I try to enjoy and do what I can while I can.
Feel good!!
Ronnie (GRANDMAr)

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@grandmar Hey Ronnie Grandmar! My primary care doctor is caring for my cellulitis. I’m taking care of my knee! I really think an orthopedic doctor needs to look at it, though. Something is wrong that rest isn’t helping. Yes, I am “the researcher”. My friends ask me to do this for them because I love it. I’m sorry about your legs and eyes. You have such a great attitude, though. You’re passing it on to me and I know you don’t even realize it.
I live in Cary, NC which is a suburb of Raleigh. I am extremely lucky because i am about 20 miles from UNC-Chapel Hill hospital and Duke University hospital. Plenty of top notch docs! Can you travel?
We had 7” of snow this past weekend and we’re supposed to have rain this weekend. I wanted to go grocery shopping with my brother but I can’t operate a walker and hold an umbrella simultaneously. At least it’s not that bone chilling cold which is awful for arthritis and fibro! Hope you’re having a good day!……..Karen

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