To the streets

[Country4eva]

I have been told by some medical professionals that all opiate patients are gonna have there meds taken except for cancer patients. Is this a scare tactic or fact?????? I have seen people who are in terrible pain loose their pain management and have had to stop their job. Suffering. No quality of life. so they are hitting the street for relief. This law is gonna cause more problems. People are going after meds illegally to get relief. Suicide rate gonna increase. The cbd hemp oil is great, but if it's not legal for pain relief in ur state or if your Dr does not approve and u use it, u could loose your dr and be left to fend for yourself. If you are on benzodiazepines, they are starting to stop narcs. They are claiming the two are respiratory depressants and dangerous. I have had several Drs disagree on this subject. I am terrified to place my qualityof life in the hands of people who are being controlled by people who don't know what debilitating chronic pain feels like. We are aliens. I feel like I'm not allowed to exist in this society that not only allows drinking and cigarettes a way to cope, but also is now using marijuana as a bumper crop and pain meds are now taboo. Taking patients meds is not gonna cure opiate epidemic. Other countries have their own labs making this stuff and putting it on the street. This is a loosing battle and it all comes down to human choice. If some wants it or needs it, they will find a way to get it. STOP making patients suffer. Drs are first to cause no harm. If someone's pain is long and hard it weighs on the mind and feelings of dying take over. Who's gonna stop that epidemic? Just my rant for today.

[Jay66]

I have heard about this happening, and fortunately for me but most unfortunately for Country4eva , it appears to be that the US is, in places, going down a route of blanket denial in order to cut down locally high areas of opioid addiction. It is an appalling thought that the authorities would take away the right of chronic pain sufferers to effective pain killers because of the actions/dependency of a minority of users. There must be a better way to deal with the problem. There are similar levels of high addiction rates in parts of the UK, and specifically Scotland, due to over-prescribing, and generally speaking wherever US goes, UK tends to follow (although not so much in healthcare).

It is explored in depth on this thread on Inspire - are you a member?

inspire.com/groups/ehlers-d...

[Country4eva in reply to Jay66]

No I'm not a member, but will check into it. It just appauls me that people can drink themselves into liver failure or smoke themselves into lung damage and no hipe about it. Have to take pain meds and you may as well be wearing the Scarlett Letter. You get judged, humiliated, down graded, and shunned at emergency rooms. You can't say how much u are in pain to anyone because it doesn't matter. Only God has kept me going. I have 76 year old mom with two torn rotater cuffs and 80 year old dad with arthritis and gout and they are told no when it came to pain relief. Just kills me to see them suffer.

[Jay66 in reply to Country4eva]

It is just plain wrong. Nobody should have to live with pain when there are lots of (cheap) solutions available.

Inspire is a primarily US focussed site, so may be of help to you generally. I try to keep up with EDS related stuff in both countries as they often follow each other down treatment paths, and of course there are many more sufferers in US just due to the bigger population, so more information is being shared.

[Country4eva]

I hate going to a new clinic. When I tell them I have EDS type 3 they always ask, "what's that?

[Jay66]

I have bought the new book - intend to lug it around with me and plonk it in front of all doctors and nurses just to show the depth of knowledge which exists about the condition and which they still don't know anything about. or worse, remember a bit about when they were told it was called Benign hypermobility syndrome and told it was just being a bit bendy.

[Country4eva]

I just had a nurse practioner say to me that "oh you have the healing problem? Ahhhhh!!!!!!!!!It is so much more than healing, and being bendy. It's caused me TMJ, trigeminal neuralgia, bulging disc, disc degeneration, osteoporosis, insomnia, 11 bowel obstructions, irritable bowel syndrome, etc....I hate even bringing it up anymore. I just sent my GP a message not to even discuss it with me anymore. Every time the subject of pain, meds and eds come up, I get angry. I'm just done with it. I'm on road every week going to chiro, accupunture, physical therapy, and gym. What else do they want from me?!!!!!!!!!!!