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Hello David - Yes, there are many of us, on Mayo Connect and elsewhere who have "invisible" disabilities, and often feel forgotten or ignored.
In addition to chronic pain, I have a relatively rare lung disease called bronchiectasis, which makes it difficult to breathe well, makes me susceptible to a number of difficult to treat lung infections - and between the two, I often "hit the wall" and have to slow down or stop - even though I look perfectly fine, and may have felt fine a few hours ago.
Other invisible diseases that are often ignored include diabetes, heart disease, hearing loss, chronic leukemia or cancer, kidney disease, deafness... Many of us feel ignored, forgotten or discriminated against.
That is why this community is so important to me. I feel understood, I get support (or a nudge) when needed, I learn from others, and together we can learn to advocate for ourselves.
Have you ever considered looking into a comprehensive pain management program or clinic? It was not easy, and I had/have to do the work to live and progress, but it changed my life.
Sue
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Sue, before and after surgery I was sent to pain centers where I received injections with no luck. Then was sent to another Pain management office. 2 weeks later he closed his office after Florida passed the medical marijuana law. I even went and got my card and tried it but didn’t like the effect of it and haven’t used it since. My Pvt MD can only write RXs for Flexeril. I won’t take anything stronger. Mar 10th is the 4 year anniversary of my father’s death who was hit head on by a mid 20 year old OxyContin addict driving a full sized GMC 4 x4 at 90 mph and my Dad in his Chevy GEO who was doing 30 mph. So no I won’t go down that road. I was tolerating the pain until early January when the old pain increased and new symptoms began. A new CT showed severe degeneration of the atlantoaxial joint so now waiting to see how they’re going to treat this problem. But no, I won’t let this get me down . I enjoy talking with other members here as they understand this journey as well. My wife of almost 45 years is my priority and I’ll never become a burden to her. I was 18, she was 17 when we got married and have never been apart. I started this discussion to see how many of us have had to jump through hoops just to see a MD. My wife is to young to retire, I was medically retired at 56 and still a couple of years away from 65. The cost of medi gap plans are unaffordable until you hit 65. I’m under my wife’s insurance and dealing with her insurance company will have you taking blood pressure meds lol. …David