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.

@rsnowflake

Sometimes I use the vape pen with thc and cbd. It calms me down and definitely makes me just enough in a little high to forget about fairly constant pain. I also use capsules with thc and cbd because I have chronic respiratory problems and the Cbd helps with anti- inflammation. Its been very helpful. Good luck. If you want 2 talk or just need someone to hear other experiences. Renee

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I tried one little pull off one of those vape pens and it scared me half to death and I was not a newcomer to THC. Child of the sixties. They put me in jail where I live for that. Glad it's helping

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@vklittle61

This sounds like what I need so bad

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Where do you live? If you want tell me where you live and I'll ask my doctor if he knows anybody who is doing the pump in your area. PS it's covered by Medicare

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@asnowflake, Congratulations. It sounds like you have figured out the best way for cannabis options to work for you. I also welcome the calming, pain free times that can be yours when including THC as well as CBD in a vape cartridge or even a tincture. Wishing a pain free day tomorrow for you. Chris

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@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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I'm a 65yr old female who had always struggled even in my 20's with contacts whichever ones I tried but was never diagnosed with dry eye. When I was 49 I decided to get cateract surgery as opposed to laser due to that causing dry eye in some people who didn't have it before. Over the yrs that followed ( probably due to my age and having fibromyalgia) my eyes were constantly gritty. In my 50's I was diagnosed with Glaucoma by an eye surgeon here in Nanaimo,BC who told me I had really bad 'Dry Eyes'.After a long discussion about how long I had felt this awful condition which was worse when I had to do my 2 X 12 hr shifts on night as a nurse he Px me Restasis eye drops,It has changed my life. I have been using them now for about 9 yrs and have gone down from twice a day to once a day. I always carry around some OTC drops for those odd days when they might still feel a little dry of I get a bit of mascara in my eye. They are expensive but the eye Dr gives me a discount card when I see him once a yr which gives me 3 boxes at half price.

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@tompet

Hi, my name is Tommy and I have several chronic diseases. I am not living in the US and am moving from Singapore back to my home country Sweden. I was first sick in 2001 in Sweden and got wrong diagnose and disability pension in 2004. In 2005 I moved to Singapore and the climate made it a lot better so I started working and cancelled my disability pension. But it got worse and I haven’t been able to work for some years and I got help from the health care system here after ending up in the emergency.

It has taken time and the first diagnose was that my knees was worn out and that I had multiple polyarthritis and was put in a wheelchair. I got physiotherapy in warm water and it has helped me a lot. Now I am diagnosed with fibromyalgia, arthritis, chronic sinusitis and chronic pelvic pain syndrome as my prostate and urine bladder gives me problems. On top of that my left lung is collapsing, I have Meckel’s Diverticulum (a pocket on the colon) and when they examined that, colonoscopy, they found the beginning to colon cancer. At this time it was benign but they could not see the whole colon clearly and want it to be done again in Sweden. Like that wasn’t enough I also had a heart attack 26 August last year with following surgery and in the middle of November I was back to hospital with heart problems. My heart was beating to slow and irregular. Tomorrow I will be admitted for a sleep study as I suffer a lot from insomnia.

I also have an abusive marriage and starved so I lost 25 kg and was diagnosed with malnutrition. Thankfully I got help from the social welfare so I could at least eat one meal a day. I am very thankful for the help I have got here in Singapore; they have done a lot for me. After several years of struggle in court I finally got help from legal aid and am getting a divorce from my wife and can return to my home country. I have tried to leave before but my wife has stopped me and now I have to leave because I will lose my PR because of the divorce.

But I have nowhere to go. I am going back to a place I have lived before but because of the refugee situation in Sweden there is no housing available. Even the health care system is trying to make it hard for me to come there. I have a daughter and grandchildren there and my daughter is helping me but fighting with the bureaucrats is horrible. I just have to go there and just hope they will help me otherwise I will end up on the street without health care. The catch 22 is that I can’t stay with my daughter because then they will say I don’t need help. The Swedish system is for refuges not for helping returning citizens. And they misdiagnosed me before. I hope I at least can refill my medications as I am not allowed to take everything with me into the country and I so badly need a wheelchair. Hope I can get help with it.

Sorry for writing so long but I am in a lot of pain and the situation is desperate so I need all the input I can get. Thank you.

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I hear you Tommy. I am British where there used to be a fantastic free health system ( NHS ). My husbna dand I are 65/66 yrs old and have live in Canada for the last 14 yrs.We are thinking of going back to England but I have many problems too,Chronic Pain from Fibromyagia, Arthrits etc .Due to all the Illigal immigrants and people going to UK to just use the NHS then go back to their own country especially women to have babies our NHS is in the toilet. At the moment I have a great teIam at the pain clinic here so I am so worried about going back as my 3 daughters who are still in UK tell me they can't even get an appointment with a GP without having to wait for weeks. I had to wait over a yr here to get into the pain clinic and I am very worried I would be without treatment for what could be a lot more than just 1 year. Does anyone on here have that experience and how to get around the wait if we go back.For instance can a Dr at the pain clinic contact a Dr at a pain clinic there to just pass on the info to get me in without a wait?

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@anniebrook

I'm a 65yr old female who had always struggled even in my 20's with contacts whichever ones I tried but was never diagnosed with dry eye. When I was 49 I decided to get cateract surgery as opposed to laser due to that causing dry eye in some people who didn't have it before. Over the yrs that followed ( probably due to my age and having fibromyalgia) my eyes were constantly gritty. In my 50's I was diagnosed with Glaucoma by an eye surgeon here in Nanaimo,BC who told me I had really bad 'Dry Eyes'.After a long discussion about how long I had felt this awful condition which was worse when I had to do my 2 X 12 hr shifts on night as a nurse he Px me Restasis eye drops,It has changed my life. I have been using them now for about 9 yrs and have gone down from twice a day to once a day. I always carry around some OTC drops for those odd days when they might still feel a little dry of I get a bit of mascara in my eye. They are expensive but the eye Dr gives me a discount card when I see him once a yr which gives me 3 boxes at half price.

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@anniebrook I also have dry eyes but do OTC gtts the Dr. never said I need Restasis but now I have a lot of gritty eyes especially when I wake up my eyes feel like sand in corners. I'm going to ask her next time about Restasis since my eyes are constantly like this somedays I have to put in the drops 5 times. I wondered if there was some help with the price .

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@lioness

@anniebrook I also have dry eyes but do OTC gtts the Dr. never said I need Restasis but now I have a lot of gritty eyes especially when I wake up my eyes feel like sand in corners. I'm going to ask her next time about Restasis since my eyes are constantly like this somedays I have to put in the drops 5 times. I wondered if there was some help with the price .

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I use Testasis every day. The manufacturer offers a great deal IF you have no insurance or you’re not on Medicare. A person isn’t eligible for any prescription discount cards if on Medicare. I’ve spent lots of time checking that out.
I have insurance but it was still $366.00 per month. So, I went online and scouted for a local pharmacy offering a cheaper price. I discovered that Walgreens was only charging me $47.00 a month after insurance. That’s still a lot but relatively speaking it’s a lot less than what other pharmacies are charging. I guess it pays to shop around.

Liked by lioness

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@bonnieh218

I use Testasis every day. The manufacturer offers a great deal IF you have no insurance or you’re not on Medicare. A person isn’t eligible for any prescription discount cards if on Medicare. I’ve spent lots of time checking that out.
I have insurance but it was still $366.00 per month. So, I went online and scouted for a local pharmacy offering a cheaper price. I discovered that Walgreens was only charging me $47.00 a month after insurance. That’s still a lot but relatively speaking it’s a lot less than what other pharmacies are charging. I guess it pays to shop around.

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Oops! I mean Restasis. Wish we could edit these things.

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@bonnieh218

Oops! I mean Restasis. Wish we could edit these things.

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@bonnieh218 I knew what you meant you can edit after you hit reply on the left side is an edit click on it

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@user_chc48c0aa

Hi, my name is Allan, I have been diagnosed with ilionguinal neuropathy from hernia surgery. I am in constant pain, the only relief, is the medication which only reduces the level of pain. No one seems to understand what this pain is doing to my activities of daily living. If someone knows if there is any clinicle studies on this I would appreciate any information. I would also like some help in assessing the Ama guide to impairment in relation to this problem.
Thank you

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Hi Allan, I have exactly the same condition, I am flying in bed at this moment with a sore left groin and a numb cold left leg and desperately seeking help, it would be good to communicate with you ? I live in the south of Ireland, Sean

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Hi I'm Sean, I have inguinal nerve entrapment which has led to chronic pain, my symptoms are a sore inflamed left groin area which comes with continued standing and walking, this leads to coldness & numbness down my left leg and pelvic pain , I was also diagnosed with small fiber nephropathy .
I have a spinal cord simulator since 2012.

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@grandmar

Hi!
Did the doctor know what kind of cancer it was before the surgery and how deep it was?
I had literally a brown dot on my big toe. It was not oddly shaped or raised. It did not bleed and it did not hurt. If I didn't have regular pedicures, I wouldn't have known it was there. As a matter of fact, the dermatologist missed it during my exam. I pointed it out.
Anyway, I had it removed because the biopsy showed it was melanoma. It was hard to believe! This tiny dot (literally the size of the top of sharp pencil) got a 1-1/2 inch long by 3/4 in deep incision. Now I know with melanoma they have to find a clear margin. The margin is usually down under, not on top. Don't get me wrong, I am glad I found it and it was so small, but an incision of 1-1/2 inches on a toe is a lot.
To top it off, it was June and I was leaving for a week long vaca with my entire family at the beach. Oh well!!
Good luck and good health!
Ronnie
(GRANDMAr)

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From Grandma @peggyella to @grandmar
My husband has had cancer 5 times… 2 of them, melanoma. You wouldn’t believe the size of his scars! The first time, tubular melanoma, very aggressive. In 12/2018, they found a spot on his back the size of a dime. It took 60 stitches to remove it bc it was deep and wide UNDER the skin. It’s always better large and a lot, than too little too late.

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@peggyella

From Grandma @peggyella to @grandmar
My husband has had cancer 5 times… 2 of them, melanoma. You wouldn’t believe the size of his scars! The first time, tubular melanoma, very aggressive. In 12/2018, they found a spot on his back the size of a dime. It took 60 stitches to remove it bc it was deep and wide UNDER the skin. It’s always better large and a lot, than too little too late.

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5 times. Your husband must be so strong. CANCER SUCKS! Ihad stage 4 throat cancer 4 years ago. I'm cancer free now but it was a tough time.

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@peggyella

From Grandma @peggyella to @grandmar
My husband has had cancer 5 times… 2 of them, melanoma. You wouldn’t believe the size of his scars! The first time, tubular melanoma, very aggressive. In 12/2018, they found a spot on his back the size of a dime. It took 60 stitches to remove it bc it was deep and wide UNDER the skin. It’s always better large and a lot, than too little too late.

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@peggyella
Good Morning,
I am so sorry to hear about your husband! Melanoma is a VERY scary cancer!!
My brother-in-law was full of moles and marks on his body. I can't remember HOW they found the first Melanoma, but the doctor did. They found it behind his calf. He went to Sloane Kettering, one of the BEST cancer hospitals. The doctors said this kind was like jumping jacks and could jump to another site that is unrelated. He also became what they called a chronic cancer patient. He would get the cancer, have it operated on, stay clear for a couple of years, then it would reappear.
To make a long, sad story short. The doctor was right! The cancer eventually jumped to his brain. He survived! Finally, it went into his groin in-between all sorts of muscles and veins. That is what finally got him at age 36. Rest his soul!
I live in Florida and after my diagnosis, I was afraid to go outside!
Bless us all!
Ronnie (GRANDMAr)

Liked by lioness, peggyella

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@grandmar

@peggyella
Good Morning,
I am so sorry to hear about your husband! Melanoma is a VERY scary cancer!!
My brother-in-law was full of moles and marks on his body. I can't remember HOW they found the first Melanoma, but the doctor did. They found it behind his calf. He went to Sloane Kettering, one of the BEST cancer hospitals. The doctors said this kind was like jumping jacks and could jump to another site that is unrelated. He also became what they called a chronic cancer patient. He would get the cancer, have it operated on, stay clear for a couple of years, then it would reappear.
To make a long, sad story short. The doctor was right! The cancer eventually jumped to his brain. He survived! Finally, it went into his groin in-between all sorts of muscles and veins. That is what finally got him at age 36. Rest his soul!
I live in Florida and after my diagnosis, I was afraid to go outside!
Bless us all!
Ronnie (GRANDMAr)

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Good morning, Ronnie. I’m so sorry about your loss. Truly. I know my husband, Barry, may die the next time he gets cancer. If not, he may have another hemorrhagic stroke and the neurologist said he’ll never survive another one like that. It was a miracle he survived the first one. He has a hole in the frontal lobe so his ability to handle his mood and anxiety are nil. I never know when I walk into the room what mood he will be in, I know God is using it to teach me more patience. I take care of him but he takes care of me as well. So I know you must miss your husband very much. It is hard to nurse someone with cancer.

Because God healed me from my abusive childhood, I have a passion to help other abused women. I also work with the homeless and most all of them have been abused, men and women. I am sponsoring a few women right now to guide them in the right direction to recovery. One of them nursed her husband with bone cancer for three years until he died. It put her over the edge and they found her on the sidewalk unable to tell the Deputy anything except, “my husband died.“ It is very sad.

Please forgive me because my memory is so bad… LOL… But did you write about having chronic pain? I can’t see the post. I’ve been in chronic pain from various sources for 49 years. I can’t say that you ever get used to it. I gave up on pain medicine a couple of years ago and told them to get me off of it. Because I was on the pump 10 years, I t took 11 months to wean me, but I’m glad that I did. Everything worked for a year or so, but eventually I needed more and then a different opiate.

I started out on morphine after few years it didn’t work anymore so they put me on snail venom. That worked until I started having audio hallucinations. I’m not kidding! I heard music all the time. I couldn’t make out any words but I could hear the instruments and voices in the background. No, I was not schizophrenic! LOL. It got so bad and so loud that one day I called my sweet neighbor and asked her if her teenagers were blasting a stereo. She said she was taking a nap and the kids weren’t home! Boy did I feel like an idiot. When I first told my doctor she said she had never read that but when she looked at blogs, lots of people complained about it.

So finally it was Dilaudid. When I had my last spinal surgery for degenerative disc disease, the lunatic surgeon cut the lead to my spine and I overdosed. He said it was an accident!!! My local pain management doctor and neurologist said that no surgeon accidentally cut the lead to the intrathecal pain pump. It was in his way and he was lazy. When I return from my follow-up visit I said to him, “Dr., you put me through hell.“ It didn’t go over too well. LOL. Like I would ever go back to him. For 12 days I hallucinated, Head sweats, nausea and vomiting constantly. I couldn’t even keep down water. When they finally discharge me, I was sent to a nursing home for rehab for two months. It was awful. So unless I have a broken bone or surgery, I won’t take narcotics ever again. I have had to since then and I only take them for a few days. I saw it destroyed my father. He was already an angry man, but it turned him into a raging maniac. Constant doses of hydrocodone day after day, year after year, decade after decade. If he tries to skip a few days, he has rebound migraines that make him feel like he’s going to die or wants to.

I never impose what I need to do for myself on others. Some people it works for and I’m happy for them. Have a nice day my friend and God bless you. I’m in Florida also.

Peggy

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