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.

@liz223

I'm Betty, I truly do not know how anyone copes with Chronic Pain. I have been in constant pain for several weeks due to a bulging disc and nothing seems to help. Also developed a UTI. Have appointment for another spinal injection Monday. Hoping it will help again for a long while. I'm about ready to agree to surgery, but it scares me. I'm 87.

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@liz223
Good Morning,
I am so sorry you are suffering from such pain. I know how horrible living with pain can be. I've lived with chronic pain for more than 10 years. It leaves you emotionally and physically exhausted!
You really did not give us very much information about how you developed the buldging disc and what you have tried. Due to most insurance company policies, there is usually a 'protocal' of steps they take to deal with the disc and pain. An x-ray and MRI should be done to pinpoint the issue(s).
1. PT is usually the first step to try to build your core.
2. Pain meds for a brief time to help take the edge off (although these days, that might not be so).
3. Injections (anything from trigger points to epidurals and everything in-between. It is best to get these shots from a pain management doctor who has experience, since it is often difficult for them to hit the right spot.
4. When all else fails, surgery.
Never rush to do surgery. It is the last step when all else fails. As I said, I lived with chronic pain for over 10 years. It was just one year ago that I decided to seek out an alternative to shots because they no longer worked. I was 63. I had 2 surgeries. The neurosurgeon replaced 2 discs in my cervical spine. Then, about 7 months ago, he did a X-lift fusion on 2 lumbar discs. The first surgery went well and I recovered quickly. The 2nd surgery also went well, but the recovery was long and very painful! I am happy to say I no longer have the chronic pain (except from osteo-arthritis). I now have another issues coming from my spine, but it is not causing pain.
I guess what I am trying to say is try other steps before jumping into surgery. Surgery is not always the answer, either. Many surgeries are not successful.
Once you have surgery, if that is the way you go, you have to change the way you do things in order not to ruin what the surgery has accomplished. Although you might feel well, it could take 12-18 months before everything is 100% healed and the settled. That means….no lifting (anything more than a gallon of milk), bending, reaching, twisting, sudden moves, etc. You'd be amazed how often we do these things without giving it a 2nd thought.
Well, I hope this helps.
Stay strong!
Ronnie (GRANDMAr)

@liz223

I'm Betty, I truly do not know how anyone copes with Chronic Pain. I have been in constant pain for several weeks due to a bulging disc and nothing seems to help. Also developed a UTI. Have appointment for another spinal injection Monday. Hoping it will help again for a long while. I'm about ready to agree to surgery, but it scares me. I'm 87.

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@liz223…. Funny, but not….a uti, is so uncomfortable it may trump stroke headaches, TOS, fibro, and trigeminal all at once! The burning and ache are so acute. Feeling for you, pain in back and bladder is NO fun. No fun at all.

@tdib

@liz223 , thank you for the welcome. I've had fibromyalgia 20+yrs. I has been real bad the last 8 or so yrs. It's everyday , bad most days . But I've recently been put on a med. that seems to be causing several side effects, one being headaches increase in stiffness and muscle spasms. Life's never been harder . If have the support of my sweetheart but my new difficulties are straining our close relationship. I have no other supporting people in my life . The thought of losing him because of these things has become an all consuming fear. I can't get back to where I was when I was at least coping with my pain and other issues. I need help but have not found it from my medical professionals. I don't know what to do to help myself. Feel everything slipping away. He gets upset to hear my weakness spoken out loud. . So thinks for giving me a place I can speak honestly. GOOD luck to each of you with you struggles.

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@liz223 Hi liz welcome to our caring group. Ive had fibromyalgia for over 30 + years we that have it all know how you feel. Dr. had be on all the fibro meds know of them helped and on 2 had side effects, so started to research elsewhere. A fibro group said that med. research stated we need more magnesium I take 600mg a day and my ct is still within the limits , Also when I hurt I use Ice ,heat , Tens unit when my muscles are tight . I love my Tens unit. light exercise is good it may hurt but does help your muscles. I had 11 of 18 pressure points and nothing helps them . This is hard for sure. The other thing is learn to say No to things that hurt you. Be kind to yourself. We here learn from each other . hope you have a good day

Hi, my name is Skip, I wish there was a section for Cauda Equina Syndrome within the chronic pain section. It's such a rare disease to have it's hard finding others who have it. I had back surgery in June and had a blood clot that compressed the nerves at the nerve root witch caused me to have this terrible disease. My pain Doctor only allows me to take 40mg of morphine twice a day and 30mg of Percocet every 4 hours. It helps some with the pain but I wish it helped more. I'm In a significant amount of pain with the meds. She has stated that the amount I'm on is a huge amount. With all due respect I told her she's wrong. They wanted me to change the script to 1 40mg pill instead of two 20 mg pills. Wish I never went down that path. Between the ins comp. Dr. office and Pharmacy we have spent hours a day for more than a week and a half trying to clean up the mess that it has caused, just ridicules, I'm now almost out of Morphine because of this issue. Need to start calling again tomorrow because the pharmacy can't get a 40mg tab of Morphine. So now it has to start all over again and go back to 2 20mg pills. What a mess it has become to just get pain meds because of the opioid crisis. Not my fault People abuse it to get high. Maybe People who do so should realize that they not only hurt themselves, family, and friends but millions of People that need them to help with severe pain. My pain Doctor has diffidently underestimated the amount of pain that is attributed to Cauda equine syndrome. They have never had anyone with this condition and I'm kind of a Guiney Pig. They don't even no if it's safe for them to give me injections????????????? All I want is help!

Liked by rsnowflake

Hello, i just joined today. I’m suffering with Rhumatoid Arthritis, chronic daily Head aches, and fibromyalgia. It started 10 yrs ago with a severe HA that never has gone away. Having new symptoms with my liver. I feel very alone. My loved ones are supportive. That’s me in a nutshell

Liked by rsnowflake

@aceswild4 Welcome to our group of caring ,supportive people I'm sorry your in so much pain I can only speak to fibromyalgia I've had it since the early 90,s I can tell you with all the ups@downs you,ve got to be tough don't let from bro win altho some days it feels it has .I found using more magnesium then other people is very beneficial .A research found we are deficient in magnesium I use Mag.hydroxide 600mg .A Tens unit for muscle tightness ,ice ,heat when really hurting a hot shower also Epsom Salts soak There will be others talking about RA @grandmar can help with o.a.the Dr gave me Meloxican which helps Wishing you well

@aceswild4

Hello, i just joined today. I’m suffering with Rhumatoid Arthritis, chronic daily Head aches, and fibromyalgia. It started 10 yrs ago with a severe HA that never has gone away. Having new symptoms with my liver. I feel very alone. My loved ones are supportive. That’s me in a nutshell

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Hi I'm Renee I have a rare pain disorder, it's kinda like phantom pain but everywhere. I have a spinal implant in my back that helps , but sometimes it doesn't help. I'm glad you joined, there are great supportive people in the chronic pain group. I'm always up for listening. We understand how hard it is to live like this. Try anything you can to keep your mind off of things. I like to color and read at 45 I never thought I'd be saying that. I was diagnosed about 2 years ago.

@skiprel1957

Hi, my name is Skip, I wish there was a section for Cauda Equina Syndrome within the chronic pain section. It's such a rare disease to have it's hard finding others who have it. I had back surgery in June and had a blood clot that compressed the nerves at the nerve root witch caused me to have this terrible disease. My pain Doctor only allows me to take 40mg of morphine twice a day and 30mg of Percocet every 4 hours. It helps some with the pain but I wish it helped more. I'm In a significant amount of pain with the meds. She has stated that the amount I'm on is a huge amount. With all due respect I told her she's wrong. They wanted me to change the script to 1 40mg pill instead of two 20 mg pills. Wish I never went down that path. Between the ins comp. Dr. office and Pharmacy we have spent hours a day for more than a week and a half trying to clean up the mess that it has caused, just ridicules, I'm now almost out of Morphine because of this issue. Need to start calling again tomorrow because the pharmacy can't get a 40mg tab of Morphine. So now it has to start all over again and go back to 2 20mg pills. What a mess it has become to just get pain meds because of the opioid crisis. Not my fault People abuse it to get high. Maybe People who do so should realize that they not only hurt themselves, family, and friends but millions of People that need them to help with severe pain. My pain Doctor has diffidently underestimated the amount of pain that is attributed to Cauda equine syndrome. They have never had anyone with this condition and I'm kind of a Guiney Pig. They don't even no if it's safe for them to give me injections????????????? All I want is help!

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I felt so horrible when I read your post. I know little about your disorder other then it's related to pressure points in your spine. I try and look up other people 's conditions, so I can be informed when talking. I'm Renee and also have a rare pain disorder that effects the whole body. I totally understand about the pain. Unfortunately mine is more like phantom pain. I feel it like a knife ripping me or burning me. Except there isn't anything there. I got a spinal implant that controls the pain in my arms and hands. But stress and weather mess with it bad. It's now in my spine. So my doctor put me on medical marijuana , just to ease the pain. I would recommend it for anyone in pain! It gives you a little lift and ease. It's legal I live in Philadelphia. I've used capsules and vape and I am not ashamed to get some relief and neither should you!!! Talk anytime you want, I'll always listen. Best of luck!!

Liked by Chris Trout, lioness

Please unsubscribe me. I"m involved with a number of these type groups locally. I really don't have time to review these e mails or contribute anything. You are doing a very helpful service. Keep it going. Incidentally, You may want to check the unsubscribe function on the website. It doesn't work.
Joan Zanuskey

@jmjlove

@liz223…. Funny, but not….a uti, is so uncomfortable it may trump stroke headaches, TOS, fibro, and trigeminal all at once! The burning and ache are so acute. Feeling for you, pain in back and bladder is NO fun. No fun at all.

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Actually, nothing trumps trigeminal. Nothing. But still, uti's are no pic-nic. As soon as symptoms arise, if I act quick enough, I drink a couple quarts of water over a couple hours and many times it will flush urinary system. If I can avoid antibiotics, and a doctor visit I'm happy. Of course there's always cranberry juice, but I find the water more effective because I can drink more of it, faster, for quicker results. If I don't act quickly, a uti quickly turno into kidney infection for me, which is much worse!

Hello. I am an 82 year old female. Four months ago I had a back operation. I now have two rods and eight screws. Four years ago they put spacers in my neck. I have pain in neck and shoulders. I also have pain in lower back below the operation area. I am functioning. Praise God. They fused five discs and it was successful.

Hello, I’m. A 55 year old male. Very active until suffering from joint and nerve pain that radiates from joints and extremities. Change diet to advoid gluten, processed foods, refined sugar and developing a supplement and vitimin protocal. Also have a MTHR gene blip so I don’t process forms of Vit B. My diagnosis continues via the traditional route and functional medicine route. The function medical route found the gene mutation and seems a more comprehensive individual diagnostic care. Looking for others to share what works and what doesn’t. Thank you for reading! Marty

@rsnowflake

I felt so horrible when I read your post. I know little about your disorder other then it's related to pressure points in your spine. I try and look up other people 's conditions, so I can be informed when talking. I'm Renee and also have a rare pain disorder that effects the whole body. I totally understand about the pain. Unfortunately mine is more like phantom pain. I feel it like a knife ripping me or burning me. Except there isn't anything there. I got a spinal implant that controls the pain in my arms and hands. But stress and weather mess with it bad. It's now in my spine. So my doctor put me on medical marijuana , just to ease the pain. I would recommend it for anyone in pain! It gives you a little lift and ease. It's legal I live in Philadelphia. I've used capsules and vape and I am not ashamed to get some relief and neither should you!!! Talk anytime you want, I'll always listen. Best of luck!!

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@rsnowflake Thank you for the shout out for medical cannabis. And a thank you to your physician for the recommendation and cooperation. All of my efforts to control the pain of chronic mayofascial syndrome (CMPS) and small fiber neuropathy (SFN) have been successful by researching and understanding what products work and how to use them. Very worth the effort. I have simplified my regimen to tinctures, vape capsules and topicals for tingling and needles in my hands and fascia pain that can be anywhere and everywhere.

Staying just ahead of the pain works best. Yoga, meditation, and mindfulness practices add to my quality of life from an approach of acceptance and tolerance. Giving back to others gives purpose to my life. Be safe and be free of pain today. Chris

Liked by rsnowflake

@artscaping

@rsnowflake Thank you for the shout out for medical cannabis. And a thank you to your physician for the recommendation and cooperation. All of my efforts to control the pain of chronic mayofascial syndrome (CMPS) and small fiber neuropathy (SFN) have been successful by researching and understanding what products work and how to use them. Very worth the effort. I have simplified my regimen to tinctures, vape capsules and topicals for tingling and needles in my hands and fascia pain that can be anywhere and everywhere.

Staying just ahead of the pain works best. Yoga, meditation, and mindfulness practices add to my quality of life from an approach of acceptance and tolerance. Giving back to others gives purpose to my life. Be safe and be free of pain today. Chris

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Thank you so much for reading my post. I appreciate it. I just want people to know that they have other options then pain pills. I also journal every day to keep track of my pain and what sets iit's off. I'd encourage anyone to do the same. I also read as much as I can on spiritual help. Have a blessed day!

Liked by Chris Trout, lioness

@artscaping

@rsnowflake Thank you for the shout out for medical cannabis. And a thank you to your physician for the recommendation and cooperation. All of my efforts to control the pain of chronic mayofascial syndrome (CMPS) and small fiber neuropathy (SFN) have been successful by researching and understanding what products work and how to use them. Very worth the effort. I have simplified my regimen to tinctures, vape capsules and topicals for tingling and needles in my hands and fascia pain that can be anywhere and everywhere.

Staying just ahead of the pain works best. Yoga, meditation, and mindfulness practices add to my quality of life from an approach of acceptance and tolerance. Giving back to others gives purpose to my life. Be safe and be free of pain today. Chris

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I recently purchased a tincture with 1000 mg of medicine in 30 ml of oil, no THC. Do you have access to both? I don't in Alabama.

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