Monday, May 22, 2017



5 Reminders Of The Not So Helpful Support
Of Support Groups

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     Support groups can be really helpful when you have an issue you’ve never experienced before or you feel like no one around you understands what you’re going through because it’s just not that common! Support groups are also a great place to get tips for ways to talk to your doctors, alleviate side effects, and reduce pain because we can’t always think of everything ourselves. But it’s this wide open field of info sharing that can also be dangerous if you’re not careful. Here’s my point:
  1. There are millions of us out there living with chronic illnesses and chronic pain.
  2. There are new discoveries every day about the health benefits of this fruit or that vegetable.
  3. There are millions of people out there who want to make a quick buck.  
Personally, I see a perfect storm of get rich quick schemes targeting the chronically ill with products that will “heal” them or “eliminate” their pain. And they seem to pop up all over support group sites.Because that is where we are at our most vulnerable. We expect everyone to be truthful. We expect them to have our best interests at heart. And we expect them to be as caring as we are.
    But remember, these diseases are all different, they act differently on each body, and not everyone cares about everyone else. So here are a few things to think about.

  • Herbs are Unregulated. There are currently no standards for the amount of active ingredients in herbs that you buy anywhere. How they are prepared can result in higher concentrations within the same company. What helps you 5’11” friend can put your 5’ butt in the ED. Also, our American culture isn’t used to many of these remedies. Some recommended amounts that are harmless in other countries can really hurt someone here. Then there’s the fact that many herbals increase the effect of medications many of us currently take acting as if we took double or triple the dose. (Ie: St John’s Wort with Antidepressants) This can and has caused death. Consult your doctor and a nutritionist before adding that herb that cured Jane on Facebook. Please.
  • Vitamins are NOT More Equals Better. We now live in a society where we probably do not get enough vitamins from our food unless we are eating very carefully so the need for vitamin supplements is understandable, but just because extra Vitamin D is recommended for bone health, especially in cloudy climates, more can actually be toxic. The same goes for many minerals that are necessary for our health such as potassium. Necessary for our hearts and electrolyte balance, potassium toxicity mimics many symptoms of neuropathy we all struggle with. Any “cure” that recommends MEGA anything should be seriously questioned unless highly supervised by a professional. (Not just the author of a book who claims he’s/she’s one.)
  • Over The Counter Medications Have Specific Uses. Seriously. Read the package. Yes, they occasionally have alternative uses that have been figured out and are doctor approved. Benadryl is commonly recommended for short term use if you’re having trouble sleeping. BUT, by and large, the OTC medications out there are not meant to be used long term, in large doses, for off label uses. In other words, your run of the mill decongestant is not suddenly the cure for your Fibromyalgia and you should not start taking it daily against package directions without talking to a physician. One common decongestant, Mucinex, actually interacts with antidepressants classified as MAOIs and can cause real problems if not monitored by a doctor. (Even if Betty says she’s fine.)
  • Exercise Builds Up not Down. Many of us find it hard to exercise due to severe pain and exhaustion. Still, it is good to keep us mobile and flexible. But if a trainer promises you a cure by pushing you beyond your limits to reteach your body, it can result in much more harm by triggering flare ups and injuries due to all the extra swelling our bodies are prone to. There is no break down to build up in our world. Physicality is fine, but we need to protect ourselves from going too far. “Cures” that do not take that into account do not understand the illness they are trying to address.
  • There IS Such A Thing As Too Much Water. OK. As a Sjogren’s sufferer who drinks water all the time, this is tough to say. But it needs to be said. Yes, you can drink too much water and it can kill you. It’s called hyponatremia. Basically, you inundate your body with so much water, your cells flood due to abnormally low sodium levels. So, yes you need to drink. Most Americans do not drink enough. But be careful how you do it.

I know it sucks that there is no cure for what we have. It sucks that our bodies attack our own cells. And it sucks that people would take advantage of all this, and us, to make money. Just remember that if something seems too good to be true, it probably is, and extremes are a sure way even more hurt. But, we are strong in our circumstance and, ironically, we are always here for each other.