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.

@tinydancer

I don’t know where to start, other than saying that I have been “here” (in chronic pain land) for longer than I realized. I’ve had headaches since I was 10. At first they weren’t chronic, but at some point over the years they have become an almost daily occurrence. I have a diagnosis of chronic migraine. I am not a candidate for the typical daily preventive meds as I have ridiculously low blood pressure. I have been using Botox for about 6 months now. There is a slight decrease in pain days but it has not been stellar. My forehead does look fabulous though 😉
I’m not sure that the migraines are actually typical migraines, or if there is something else going on. I definitely know that the occipital nerve is involved by the location and type of pain that I experience. But I also had an MRI done before receiving the Botox- they found numerous tiny white matter foci, and a lot of demyelination. To add to the back story, I have recently had difficulty with the vision on my right (intermittent blurry- have to close it and use my left instead) and great difficulty swallowing. The pain is crushing me, and to be honest I’m a bit scared. Do migraines typically change over time or am I missing something? I’m stuck waiting in cue for a neuro. The family doctor is not helping at all. Is there anybody out there like me?

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@jamienolson I appreciate the link on migraines, I was planning to ask about that today! I used to suffer from migraines and my daughter does now so I looked on the discussion list but did not see migraines. Now that I have the link I will send it to her. When I had migraines I read that many people with migraines know more about them than do doctors unless the doctor is a migraine specialist. I read everything I could get my hands on — before the day when we had the internet.

I think if you have any condition you tend to learn more about it than the typical doctor. Obviously my doctors did not know enough about cirrhosis to diagnose me for a year and four months. If I knew then what I know now I would have headed to Boston after 6 months of no diagnosis up here.

JK

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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@contentandwell, @barbvh, @pinkpain51: My pain doctor will not treat me if he finds marijuana in my drug test. He actually drug tested me at my last appointment–jerk. The first time in my life! I had already told him I wouldn’t use it if that meant he couldn’t treat me, but since its legal in California, I didn’t understand why I couldn’t use it. He said as long as it’s illegal at the Federal level, he can’t let me use it or he will be in big trouble and could lose his license. So, it’s probably the same for you.

I have used marijuana cream, prior to being with the pain doctor, and it really works. It comes in different strengths and doesn’t make you high. You can also get marijuana tincture that you drop under your tongue in different strengths that won’t make you high. Edibles can make you really high, so you should research them if you are considering using marijuana for pain. The people at the marijuana shop will be very helpful in telling you which types of relief you can get and what to try first. I found them pleasant and educational. When I used marijuana previously, it worked! I just needed stronger/different medication with my spinal cord injury. Now that I’m better I’m considering tapering off the Tramadol 50mg 4x a day that I am still taking so I no longer have to see the pain doctor. I would begin using marijuana instead. The only problem I see is that I won’t be able to use it in every state and country. We will be traveling a lot in the future, so I have to consider the consequences of switching. Now that Trump and Sessions are in office, I don’t foresee a change at the Federal level that would make marijuana legal, so, I am rethinking my idea about changing off Tramadol.

I want to do the genetic testing for proper medication prescribing. That’s a brilliant new thing! Thanks for the information.

Gail B Ledesma

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@gailb

I haven’t posted much lately as I’ve been experimenting with different non drug pain relievers. I am in Missouri this week visiting our friends and going to an Amish wedding. Previously we owned a bed and breakfast inn here (for 16 years) and had one guest who visited for many years about 5 or 6 times a year. I only knew he did some work with the Amish while he was here, but I didn’t know what. We sold our inn 2 years ago, and moved to California. We’re staying at the inn this week and It just happened that our former guest, Jim, and his cohort, Jan, were also here. I was talking to Jan and mentioned my chronic pain. She then told me that she and Jim work on the Amish for pain. Jim and Jan do cranial, muscle release, and myofascial therapy. She offered to see if she could help my situation, and I accepted.

Oh my gosh, she worked on me for 30 minutes and the relief was almost instantaneous! My right leg, hip, leg, and ankle had nearly complete pain relief! They called the next day (yesterday) and offered to do more and I accepted again. They both worked on me last night doing cranial and TMJ corrections and just holding certain muscles. I can barely believe the complete change in my posture, pain relief and feelings of joy! This is the only thing I have done that has released me from the grip of constant pain in my right hip and leg! I am so happy. When I get back to California, I will look for therapists who can do Muscle Release and Myofascial Therapy so I can continue this kind of therapy. Amazing!

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@contentandwell. Thanks! Yes, Jim and Jan are sending me some names. I’m still feeling great.

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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@gailb I actually was kidding about asking my PCP, although he would keel over. I have nothing against its use but I have not enough pain to warrant using it myself, thankfully.

Frankly I think your doctor is wrong though. If it’s legal in your state then I do not think there is any way he could lose his license for prescribing its use, unless he did it in such a way that a federal insurance would pay for it, since it is not legal at a federal level. I have heard it is quite costly too from people who did got it for their mother who was really suffering.
JK

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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I tried to reply to this post but keep getting notice that you have redirected my posts too many times etc. Don't get it. I rarely if ever post anything so what is this about??

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@scottyrussell. I have had a tremendous amount of pain on the right side of my back, hip, leg, knee and ankle for over a year. The other day 2 people worked on me for 30 minutes twice doing “muscle release and myofascial therapy”. It completely stopped my pain! I had been taking Gabapentin and Baclofen previously, but tappered off both. My pain improved when I got off the Gabapentin, to my surprise. I had cramps in my thighs that made me cry they were so bad at times. The therapist worked on a muscle in my groin until I felt it release. Im sure that was what was causing my extreme pain.

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hello @goodtime376, I’ve had similar issues with redirected pages when using the Google Chrome web browser. I’ve been able to fix the problem by clicking on the three dots in the upper right corner of the window, then select More tools and clicking the Clear browsing data button. Hope this helps.

John

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@gailb, I can literally feel your pain. I had cramps in my thighs which I know now were from cirrhosis, but they started at least three years before the cirrhosis diagnosis. They were so bad they basically paralyzed me. My husband desperately wanted to help me and at one point when my son was visiting and I had them he wanted the two of them to carry me to the car and bring me to a hospital! If he had moved me I am sure I would have passed out from the pain. Thankfully those cramps only happened about three times a year. I did have other bad cramps from cirrhosis, multiple times a night that woke me up and got me out of bed, but nothing like the ones in my thighs.
JK

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@contentandwell conten. Thanks for your response. How did you find out about your cirrhosis? How are you dealing with it? I really know little about this disease. Anything you are willing to share would be helpful.
Thanks, Gail B. Ledesma

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@gailb

I haven’t posted much lately as I’ve been experimenting with different non drug pain relievers. I am in Missouri this week visiting our friends and going to an Amish wedding. Previously we owned a bed and breakfast inn here (for 16 years) and had one guest who visited for many years about 5 or 6 times a year. I only knew he did some work with the Amish while he was here, but I didn’t know what. We sold our inn 2 years ago, and moved to California. We’re staying at the inn this week and It just happened that our former guest, Jim, and his cohort, Jan, were also here. I was talking to Jan and mentioned my chronic pain. She then told me that she and Jim work on the Amish for pain. Jim and Jan do cranial, muscle release, and myofascial therapy. She offered to see if she could help my situation, and I accepted.

Oh my gosh, she worked on me for 30 minutes and the relief was almost instantaneous! My right leg, hip, leg, and ankle had nearly complete pain relief! They called the next day (yesterday) and offered to do more and I accepted again. They both worked on me last night doing cranial and TMJ corrections and just holding certain muscles. I can barely believe the complete change in my posture, pain relief and feelings of joy! This is the only thing I have done that has released me from the grip of constant pain in my right hip and leg! I am so happy. When I get back to California, I will look for therapists who can do Muscle Release and Myofascial Therapy so I can continue this kind of therapy. Amazing!

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@gailb I’m so happy to hear that you have found a treatment for your pain! I hope that you are able to find people who can treat you with these therapies in your own community. I just found a provider for this type of therapy within a couple of miles of where I live. Teresa

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@gailb It was a long road to finding out I had cirrhosis. The first obvious symptom was an HE episode. I was sort of illogical. It was Christmas Eve 2013, our son and daughter were here (both live away — one in CA, one in NYC) and I said in the middle of dinner that I was going upstairs to take a nap! Right away they knew something was wrong so they called the EMTs and an ambulance, they thought I might be having a stroke or something. By the time I got to the hospital I was fine and it was diagnosed as fatigue, dehydration, low magnesium, and a UTI. Then my PCP called me a couple of weeks later and told me she thought I had Alzheimer’s! She was quickly history. I went to a neurologist (who guffawed at her diagnosis) and my hematologist, my new PCP, but no one could figure it out. In the meantime I continued to have these episodes sporadically.
Then I got an episode that put me in the hospital — I was basically acting mentally catatonic. That episode took about a day and a half to pass. This was a year and four months after my first episode. A hospitalist put the symptoms together and ordered an ammonia test — if you have liver problems the liver does not filter out toxins like ammonia created when you eat a lot of meat, and it goes to your brain. My ammonia was very high which led to a CT that confirmed cirrhosis. Now why my PCP who is supposedly very good could not put those symptoms together will always plague me. Was it because I never jaundiced? I think he is going to be history next. I had an appointment with him on Friday and as he looked over my info he said I had cirrhosis and cholestasis (a gall bladder problem). I looked at him and asked how could that be, I had a new non-cirrhotic liver and when you get a new liver it does not come with a gall bladder. He couldn’t figure that out? He was looking at results from six months prior to my transplant!

Thankfully my transplant took place on September 23rd, for which I will be forever grateful. When they dissected my liver it was almost totally spent so I guess I could have not gone on much longer without a transplant. I was one of only two women with my profile to be transplanted at MGH in the last quarter of 2016 (stats from Compare Transplant Centers). I thank God multiple times daily, there were an incredible number of people praying for me. I must be hearty stock because up until the last month and a half I looked great and was functioning normally except when an HE episode occurred. The last month and a half I bloated up with edema and ascites, I was miserable. I have become passionate about encouraging people to get listed as organ donors. I told my son and daughter that was all I wanted for mother’s day, for them to sign up.

So, I hope I haven’t gone on too much but that’s the whole story. The biggest change I would make would be to go to MGH or one of the other excellent hospitals in Boston, much sooner. After six months of no diagnosis I should have just gone. Despite my other symptoms — continually decreasing platelet counts, constantly cold, fatigue, blood pressure got lower — they were looking toward neurological problems. I feel so fortunate that we are only about 60 miles from Boston.
JK

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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@contentandwell What do you mean by the phase “HE episode”? Teresa

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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I am so sorry for your suffering. It sounds like you have been through alot. I have learned over the years that there are good doctors and not so good doctors. What does a doctor get when he graduates at the bottom of his class? He gets to become a doctor! I will pray for you and hope you are not suffering. I was wondering what a HE episode is as well.
Best wishes for good days.
Kristine

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Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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Hello Michele,
I was diagnosed with Fibromyalgia and later learned that I had severe Osteoporosis which caused bone pain and a collapsing spine. The point I want to make is that sometimes doctors use that diagnoses when they don’t know what else is going on. I would suggest a good Internal Medicine Doctor since they have alot more schooling. Do not give up. Continue to read about your symptoms and see as many doctors as she needs to. The immediate thought that came to mind was some kind of allergy. I have heard mold can cause problems like you describe but it could be many things but tell her not to give up. I hope for her better days.
Kristine

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