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Posts (324)

1 hour ago · Osteoporosis of the spine and boniva in Bones, Joints & Muscles

@missymew, Good afternoon. Thanks for visiting us on Connect. As volunteers, we cannot recommend medical treatment or medications. What we can do is share our experiences with you so that you may add to your own body of knowledge and be your own advocate for medical issues.

I am afraid I do not have a success story with Boniva and evidently, it didn't get a very nice welcome from my body. I do like to give medications a good trial before giving in. So I tried the once a month Boniva for 4 months and the result was the same….severe pain in facial bones, eye sockets, jaws, even the sternum, and rib cage within 24 hours. The discomfort took up to 10 -15 days to recede.

My PCP said she had never heard of anything like what I experienced and discontinued the medication. It is mentioned a bit in the literature but sometimes manufacturers put a lot in the legalese to cover any potential threats. So…if you cannot take Boniva…there isn't much that doesn't have the same ibandronate component for osteoporosis.

I ended up with an endocrinologist who helped me get the daily self-injectable Tymlos. It can be very expensive if you don't have the appropriate RX coverage and if your provider doesn't fill out all the exception papers and monitor the pre-approval process. Saying that I had no other options was the game changer and for that, I thank my best friend GiGi….a nurse and teacher.

However, I have had no side effects and sure don't anticipate any. And with Tymlos you don't have to refrigerate that medication as you do with the other choice which is called Forteo.

For a while, I wondered if I needed to spend time and money on this issue when I am 77. However, I do want a chance to have a reasonably good quality of life with as little pain as possible.

Another good thing is that you only take Tymlos for 18 months and the results can be good. Are you still having no side effects? Do you have to take Boniva for a very long time? Please have happiness today and the causes of happiness. Chris

1 hour ago · Chronic Pain: Depression as a result in Chronic Pain

@rick1945, Thanks for getting back to us. You are a great friend to have. I appreciate the medication information. The Neuronton, aka, Gabapentin is really not a pain medication per se. It was developed to address seizures and has off label use for restless leg and anxiety. The maximum daily dose is 3600 mg. Some patients have side effects, like me, and so only use it at night. I currently take 1200 mg about 9:00 pm. It can relieve the needle-like pain of neuropathy and has been important in ensuring that I sleep past 5-5:30 am when there can be a high level of neuropathic pain that wakes you up.
Is there anyone who has legal permission to be her advocate with the medical community? How can we best help and support your efforts? Chris

2 hours ago · Myofacial pain in Bones, Joints & Muscles

Good morning neezy23. Thank you for your excellent presentation of your pain symptoms and the rheumatologist's diagnosis of Chronic Myofascial Pain Syndrome (CMPS). Although not your youthful age, I was an avid walker/hiker who thought nothing of a 10-12 mile walk around and about. The diagnosis was devasting news for me at 74. I am now 77 and am walking again….not 10 miles…just 1-2 but I am walking.

Just like you, I did way too much inappropriately…..falling off horses, falling down mountains….breaking bones and tearing muscles.

How did I get this far back…..meditation, mindfulness, yoga and Myofascial Release therapy (MFR). Connect has a discussion about MFR at https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/ .

Please take a few minutes to read about this special modality for helping. You may also want to take a look at the Youtube video called "Strolling under the skin" which shows how the fascia wraps around our organs fluidly. Sometimes, injuries result in a compression of the fascia into very tight restrictions which are painful and can be debilitating.

If you can let me know when you are ready to take the next step, I can introduce you to other Connect MFR patients. Be safe and protected today from both inner and outer harm. Chris

6 hours ago · bipolar issues in Mental Health

@renwald Thank you so much for your self disclosure about ANTS, a sensible talk therapy technique. Self compassion is arguably the most difficult goal of the mindfulness practice. Did you also learn about mindful speech? I use it frequently for my own negative self talk or what I call monkey chatter. There are 3 questions that you must answer before proceeding with the thought or statement…..is it true?……..is it necessary?…….is it kind? A lot of self doubt and/or self harm just doesn’t pass the test. Have some joyful moments today. Chris

16 hours ago · Stem Cell Therapy for Neuropathy in Neuropathy

@pjfrahm Good evening. I read your posts about intraneural facilitation including your first treatment outcome. It appears that you experienced some relief and are hoping to take another big step at Loma Linda. Please let us know the results of this treatment or is it a series of treatments? It is encouraging to know that Loma Linda has opened a neuropathy climic.
Thanks in advance. And please be safe and protected from harm. Chris

20 hours ago · Living with Neuropathy - Welcome to the group in Neuropathy

@wilcy, Hi there, I notice that you started medical cannabis on Jul 8. You thought it would be interesting. I found it a bit overwhelming and intimidating until I found a "guide(s)" to show me the way. It does take quite a bit of experimenting and self-educating. When you went to the dispensary, were there folks to show you all of the options that might be appropriate for your condition? Of course, you do have to remember that you can always have more but you can never have less so start low and go slow.

In 3 years I have had only 2 episodes where I was loopy. Both involved mixing cannabis with alcohol. Now I know…..you just can't risk it. The loopy does go away in about 3 hours and you will be fine.

At this point, I use tinctures, topicals, and a vape cartridge….. no flowers, beverages or edibles. I have worked out a conservative and reliable strategy called Chris's protocol.

I know that product options have increased since I started. Would you be willing to share what products you are using and how you are feeling? If you have a question or two, I would be happy to help if I can.

Please be safe and protected…….Chris

1 day ago · Living with Neuropathy - Welcome to the group in Neuropathy

@gmaw, Thank you for this information. This appears to be a reliable strain. It also looks like you have done your experimenting and chosen your medical cannabis safety net.

I have small fiber neuropathy (sfn). I use both topicals and have recently mastered the sublingual dosing. Just a few minutes held under your tongue so it goes through the membrane quickly…..3 times a day. Then come the topicals for hands, wrists, and feet.

Congratulations to you for being pain med free. That also means that you are probably free of fear and anxiety about the pain. Since fear and anxiety cause more pain, you have chosen a significantly more effective path.

Please share significant changes and new knowledge. Have a joyful day. Chris

1 day ago · After knee replacement surgery in Joint Replacements

Beautiful. I love gaited horses. Peruvian pasos are also great. You can drink your coffee without spilling a drop. One time we had Mr. O’malley. He was a retired pacer. It is difficult to retrain them to be a pleasure horse. What a life with these amazing animals.