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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@kristacat

Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired - I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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Don't worry about addiction to painkillers. If you don't take enough to get high you're not going to get addicted. Also if you're in a position like I am or you're going to be taking whatever you're taking for the rest of your life why on Earth would you worry about becoming addicted? Addictions only a problem if you need to stop and if that were to happen and if you did need to stop you would taper off slowly over a couple of weeks. The problem with painkillers did you have a hard time getting them because doctors are too damn spineless to prescribe them. Love & blessings

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@wsh66

You might try going gluten free for a month. It helps with many skin conditions. I saw a new Post Cancer/Lymphedema doctor yesterday who prescribed heavy exercise, aerobic and weight training as a solution to the somnolence, (tiredness), that Chemo and Cancer leave you with. I also use Adderall. Once you get used to adderall you really don't notice your taking it and the crash goes away. She didn't think much of the Adderall. Celebrex is great for reducing swelling and a gluten free diet will also reduce swelling. Lyrica is good for Fibromyalgia and other forms of pain from over active nerves. Chronic pain is still best dealt with with Opiods if it's too serious for Tylenol. If your going to hurt for the rest of your life you might look into a pain pump. I have one and it's the best thing that ever happened to me. I used to eat 252 mg. of various narcotics per day. Now I get 2.75 mg. to 3.75 mg of dilaudid delivered directly to my spine. That is 300 times more effective than eating the same amount. Message me if you need more help.

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Gluten-free is actually pretty easy. Gluten is only found in wheat flour. There are plenty of good replacements on the market. Three Bakers breads are the best that I found. The best pasta substitute is jovial. The J in that name should be capitalized, it's a brand. I just had Honey Nut Chex for breakfast most Chex cereals are gluten-free. Gluten-free baked goods like cakes are delicious. Most places offer gluten-free hamburger buns but they aren't very good. Many pizza places offer gluten free crust which are good. Try it for a month it's worth the effort. Inflammation leads to so many other problems if you can get rid of any inflammation it's worth your time and effort.

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@kristacat

Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired - I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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hELLO Kristacat 🙂 There are so many folks suffering tht it seems incredible. Some folks seem to take it in stride and others get so down. I have suffered with what was diagnosed as Fibromyalgia. That was back in the 1980's. And because it was not well known a lot of Dr's said there was no such thing. And people suffered thinking they were hypercondriacs and it was all in there heads.
For me pain is so very personal. I don't want others around me when I am dealing with pain., but I have learned that I need others, I believe we all do. Keep reaching out all around you. Let others help you see things that you may have missed. Find the wonders in life as you work thru the pain. Depression is almost as bad as the pain. I live with someone who lets me do whatever I need to do. He never complains that I am not able to do much some days or that I sleep all day because the neuropothy keeps me up at night. I currently take 800mg gabapentin + 50mg tramadol every six hours to control the neuropothy. If I miss a dose on time it is so hard to catch up. I take blood pressure pills twice a day, multi vitamins/minerals, tumericl with astragalas. I have a pace maker, a spine stimulator and am presently having injections on my upper and lower back. I have severe stenosis and the last time I had am injection it hurt so bad I had a difficult time dealing with the pain. It has lasted about three days now, and usualy when I get these injections after a coule od days I can walk without support. It does seem to me that once I get some pain controlled, not gone but controlled. another pops up and says HELLO did you miss me? he he I am wondering if any of you that are sharing are having trouble with sleeping all the time? I would like to stay awake and enjoy this beautiful weather but I sleep so much and wonder if it might be the meds that I am taking. I know I am rambling here..sorry...But PEACE AND LOVE TO ALL.

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@raina

Hello, my name is raina, a new member to the chronic pain group. I have fibromyalgia, chronic pain and fatigue. I hope to get and give tips on how to live with these diseases.

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Hello @raina and Welcome to Mayo Connect

I am pleased that you have joined this discussion. If you feel comfortable sharing more about yourself, please let us know how long you have been experiencing this pain and fatigue and when you were diagnosed with fibromyalgia?

As we all learn from each other on Connect, could you share with us some tips that you have found helpful in coping with these symptoms?

I look forward to hearing from you again.

Teresa

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@kristacat

Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired - I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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@oregongirl

Not everyone gets "addicted" to Tramadol. Also, you aren't taking as much as I was. Even then, I never felt like I needed to increase the # of pills I was taking, so it wasn't the opioid type of addiction. If you will have pain for the rest of your life, you may not ever want to stop taking the Tramadol. I can still take it on an as needed basis, which I have done a couple of times while traveling. I only needed 1/2 a 50 MG pill to take effect. Also, you are taking 1/2 the amount I was taking (2 pills per day - vs- 4 pills for me). It sounds as if you won't have access to CBD or THC in Texas, so I wouldn't worry about getting off the Tramadol.

I stopped using Gabapentin because I was losing large amounts of memory. I felt off balance and goofy, like I couldn't think straight all the time. When I completely spaced out opening Christmas gifts and didn't even realize it for 3 months when a friend asked how I liked the gift he gave me. I said, what gift? I learned that I was in trouble because I had 0 memories of it. I decided to stop taking Gabapentin then. I was amazed that I felt so much better without taking it, even my pain was less. I don't think I ever needed it.

One thing I just learned is that Tramadol should
NOT be taken with Citalopram. I was NOT aware of the problems that can happen with the combination of the 2 drugs. I am shocked that my pain doctor nor my pharmacist warned me about the interaction problems. I was taking a lot of Tramadol for over a year (4 times/day). I will talk with both my pharmacist and my doctor about this the next time I see them.

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@kristacat

Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired - I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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I never did maybe at the time of fracture I was on Vicoden also tapering of was a process Vicoden went first then rest but our bodies are different but even Dr rheumatologist wasn't concerned he said 2weeks at a time .

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@susan1955 and @raina

Welcome to the Mayo Connect online community. I am a Volunteer Mentor and as such, I am not a medical professional and can only offer my own personal experience and support.

I recommend that you go back through the posts here to find out what has already been discussed. In these discussions you may already find answers to questions you have.

Please tell us more about your journey through chronic pain and anything that has given you some relief. And, keep in mind that what works for me or you, may not work for anyone else. I look forward to hearing more from you.

Gail
Volunteer Mentor

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@kristacat

Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired - I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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I am amazed at the side effects you had with Gabapentin. I had said earlier that I had no side effects, but I have the same things you speak of. I simply thought it was my "old age". I actually can't tell if it does any good, but it might be doing harm. My Neurologist seems to think it can do no harm. My husband's doctor says it is useless. So many different opinions. I am going to come off and see what happens. I sure would like to get some of my memory back.. I take three capsules each morning. Maybe cut back one at a time.

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I want to draw everyone's attention to a CNN Special Report by Dr. Sanjay Gupta that was shown last night. It's his 4th report on the use of "Weed" or Marijuana/Cannabis. His reports have been tremendously helpful in understanding the scientific research that has shown Cannabis to be helpful and not harmful.

Last night I learned some things I didn't know about using Marijuana/Cannabis. I learned that CBD and THC are anti-inflammatory medications. Since inflammation is the culprit in many health issues, I found that a good thing. I know inflammation adds to pain, so NSAIDS are often recommended. But, for some of us, ibuprofen, aspirin and other NSAIDS have already done their damage to our stomachs. I cannot ever take them again. I also have had a gastric bypass (RnY) surgery, and cannot take NSAIDS because of that.

Another thing I learned is that there are no set amounts of Marijuana or CBD to use. Depending on the type of Marijuana you purchase, the dose will be different. It will also vary personally. As I have said, I am hyper sensitive to Marijuana when vaped. I can't use it that way. I can use about .30 ml dropper sublingual for pain relief with a light high. I don't like feeling high, and maybe I will adjust over time but since I don't need it very often anymore, I'm not worried about it.

A Very important learning was that Marijuana actually heals the brain over time from the addiction of opioids. I knew that it helped me to withdraw from the Tramadol I was taking. I have also realized that when I quit cigarette smoking on 2/2/82, and I smoked Marijuana (illegally then) for some relief when my withdrawal got terrible, it really DID help me quit smoking. The report said you cannot overdose on Marijuana and no one has ever died from Marijuana. Marijuana is NOT a "gateway drug" and is in fact the opposite of that because it actually helps people permanently withdraw from opioids without the terrible symptoms of withdrawal.

Apparently Marijuana also helps prevent Dementia and they think it MAY stop the progression of Alzheimers. It seems to destroy certain proteins in the brain. They're cautiously optimistic about that.

I highly recommend that if you have questions about "pot", "marijuana", "cannabis", "hemp", (all interchangeable names) or it's derivatives, CBD or THC, watch this CNN special report. You can probably purchase the video or can stream it on your computer.

Gail
Volunteer Mentor

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@kristacat

Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired - I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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Liz. I am so sorry you have memory issues. I fell forward and did a great deal of damage to myself. I passed out and never felt a thing. I have no memory of fall. Since cutting back on drugs I have a clearer head. I spent 3 weeks in hospital and received every diagnosis known to man. In other words...doctors do not know what to do for us. They used to just prescribe pain pills. Now they shake their heads.

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