Daughter diagnosed with fibromyalgia

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tjpitts10

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Hello Everyone!
I am grateful to find this forum. I am hoping I can find some real answers to so many unanswered questions. My Daughter has been diagnosed with Fibromyalgia. She also has Psoriatic Arthritis, Chronic Pain Syndrome, Migraines, Chronic Tension Headaches, Cluster Migraines, and a few other things that are relatively minor. She is in constant pain over her entire body 24/7. She has headaches every day and migraines probably 2 times a week and sometimes more. She has tried the major medicines given by a Rheumatologist for arthritis but nothing worked. A majority of the medicines prescribed either do nothing or do the exact opposite of what they're supposed to do. Prednisone for example makes her arms swell and causes massive pain. Lately there have been increased challenges because her long time doctor of about 10 years retired and the new doctor she was assigned to seems to be laser focused on taking her off of her only pain medication. Without any pain medicine at all, she is basically bed ridden with increased pain and stiffness. I would like her to try CBD but she is afraid because she tried it in a pill form years ago and didn't like the effect. She said it made her feel high for days. Truthfully, I am not convinced it was CBD because it sounds more like medical marijuana to me. Anyway, I am glad to be here and hope to get some great information as we are close to the end of our rope.
 

sunkacola

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Hi there,
It sounds to me as if your daughter's doctor may be trying to take her off the medication for pain because it is a narcotic? If it is (such as Tramadol) then it is not beneficial to stay on it long term, as it is highly addictive....about like heroin. Plus, of course, it doesn't address the causes, only deadens the pain. So going off it is really the best thing to do.

There is not the slightest possibility that CBD oil caused your daughter to be high for any amount of time. There's nothing in it that could do that. It's like claiming that peppermint tea made you high for days. So, either that was psychosomatic, or else she took something other than CBD.

CBD by itself helps a lot of people, but the majority don't really experience a difference unless it is combined with THC in a 1:1 concentration.

I suggest that you read my (long) post about tips and suggestions for the management of Fibro, which was written especially for newcomers but applies to everyone.

You cannot approach a chronic and systemic condition like this with just one pain drug or one method. The best results come from an integrated approach that takes into account the health of the entire body, and how the person lives. Once you have read that, if you have any questions please ask me.

I am not an expert. Just a person who also suffers from this and I know what helps me and a lot of other people, and I want to help others in a way that no one helped me when I was first struggling with this. Best of luck.
 

Drummer76

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I agree the pain meds need to go. Not very beneficial and will cause longer term problems. My doctors have told me that they won't prescribe any pain meds which is ok with me,since I don't want them.
I've done some reading and idk if this applies to your daughter, but if she had untreated fibromyalgia can be harder to treat.
I have started using cbd and I don't get high off it. I think the thc content is .3% max. It helps with some symptoms but it's touch and go. I found the smokable form to kick in faster then oils or pills. Might look into it. Downside it does smell like marijuana.
 

tjpitts10

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Thank you for the replies Drummer and Sun. I realize that opioids are not an ideal life long treatment, but when it's the only thing you have from keeping you bedridden and allowing you to function.... My daughter was on the lowest dose possible of a time released medication. She's willing to try other things, but taking away the only thing that allowed her to function without even giving you an alternative seems cruel to me. Then they try and tell you how extra strength Tylenol works better. I realize the potential health risks and the stigma that goes with it. It makes me angry that some doctors won't hear of letting a person stay on a controlled substance just because it's a controlled substance. You are monitored on a regular basis to check for abuse, etc. It is insulting to have to go to the emergency room because you're in so much pain and when the ER doctors looks at what you're already taking they automatically assume you're just looking for drugs. Okay, rant over. We are going to start CBD tomorrow. We'll try that just by itself for awhile and see how it goes. If it doesn't do anything by itself then we'll add THC and try CBD:THC. I hope it helps.
 

Drummer76

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Messages
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Reason
DX FIBRO
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Thank you for the replies Drummer and Sun. I realize that opioids are not an ideal life long treatment, but when it's the only thing you have from keeping you bedridden and allowing you to function.... My daughter was on the lowest dose possible of a time released medication. She's willing to try other things, but taking away the only thing that allowed her to function without even giving you an alternative seems cruel to me. Then they try and tell you how extra strength Tylenol works better. I realize the potential health risks and the stigma that goes with it. It makes me angry that some doctors won't hear of letting a person stay on a controlled substance just because it's a controlled substance. You are monitored on a regular basis to check for abuse, etc. It is insulting to have to go to the emergency room because you're in so much pain and when the ER doctors looks at what you're already taking they automatically assume you're just looking for drugs. Okay, rant over. We are going to start CBD tomorrow. We'll try that just by itself for awhile and see how it goes. If it doesn't do anything by itself then we'll add THC and try CBD:THC. I hope it helps.
Not sure if you knew this,but opioids will cause fantom pain as well.
People with fibromyalgia are encouraged to move around and not stay in 1 position long,unless sleeping. It's a rough road to get the pain under control,I've been there and still have my days. But moving around more will help. Try yoga walking whatever she can handle and start small.
You'll find alot of doctors won't prescribe pain meds for fibromyalgia and say it has no benefit. It's all trial and error and we are all different. That's what makes this so hard to treat,everyone has different symptoms so it's not a 1 treatment works for all type of thing.
I wish you luck on finding something to help.
 

sunkacola

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ou are monitored on a regular basis to check for abuse, etc. It is insulting to have to go to the emergency room because you're in so much pain and when the ER doctors looks at what you're already taking they automatically assume you're just looking for drugs.
Many of us have experienced this.
This is yet another good reason to stop taking those medications. It will only get harder to get them and they are very damaging, so going off them is the only thing to do. I did it, as have many others, and it can be difficult at first but it's very much worth it to find a better way. As has been said, opiates can cause phantom pain and have many other terrible consequences.

Tapering off steadily (and don't go back up) while implementing other things like diet, movement, CBD/medical cannabis and so on is the best way to do it.
 
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