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Run down but forging on
Currently managing two autoimmune conditions. One I take medicine for, the other is at the "wait-and-see-what-happens" stage.
One, or both of them, however, are leaving me really drained at the moment. I find myself fatigued, not sleeping well, sore & achy muscles, inflamed joints... just overall not my best.
Saw my rheumatologist yesterday who suggested that Pain Management might help.
Does anyone in the FGB family have any experience with this? I'm currently seeing a chiropractor - whom I like very much (and I don't like going to the chiro overall).
Thanks!
Kimberly MoonClinical Research Professional
603
07/16/20 at 6:10PM UTC
Oh, one other thing! If you haven't checked out a community called "the mighty," you might want to check it out. It is a community of "invisible illness" sufferers and there is great information and support there. They may be able to give you more perspective on pain docs.
Kimberly MoonClinical Research Professional
603
07/16/20 at 6:08PM UTC
I can relate to what you're going through. I have migraine disease and recently have been diagnosed with one autoimmune disease with a few others in the "wait and see" phase.
I am not a doctor, so take this advice with a grain of salt. Before you go to the pain management specialist, you may want to ask yourself what you hope to achieve. Do you want temporary relief only, or do you want to find the root cause and fix that? Often, pain specialists will work to prescribe pain meds and maybe some physical therapy, but many of them don't work to find a root cause.
Your pain is real, but WHY are you having the pain? You know you have autoimmune disease, but WHY have you developed autoimmune disease? I should note here that 1) there may be no clear or obvious answer and so it will take a lot of work to get to these answers and 2) this is in no way an exercise in self-blame. The "why" is not to get to a point of blaming, but rather understanding so you can make positive changes.
Perhaps some of your autoimmune disease and inflammation is due to diet, or allergies, or stress, or past trauma. Perhaps they are due to another underlying condition or you have a genetic predisposition. All of these are important pieces to this complex puzzle.
For me, I am managing my pain (joint pain, muscle pain, spine pain, headaches, tooth and jaw pain, etc.) with things I never thought would help. I'm attacking it from multiple angles.
The first angle is attacking the inflammation - I have changed my diet completely to eliminate all potentially inflammatory foods, starting with things I suspect or know I'm allergic to and then moving on to a more intense diet to remove known inflammatory items. This means I'm now vegan (no meat, no animal products), I don't eat processed foods (almost nothing that was pre-made or came from a package). I eat all organic (because I found out that I have intestinal damage caused directly by pesticides). If I do have a day where things flare up I take Naproxen Sodium (Aleve), which doesn't always make me feel better, but I know it is working inside of me to decrease the inflammation, even a little bit. I will ice areas that are extra inflamed and that does help a little.
Secondly, I'm attacking toxicity. I have had heavy metal poisoning and due to the issues in my gut from pesticides as noted above, I have an issue detoxing, which is causing a lot of inflammation. I'm doing this by 1) removing metals from my water using filtered water for everything I put into my body, 2) I'm taking some chelation agents (medicine that binds to the toxins in my body and pulls them out so that I can eliminate them) - these are prescribed by my doctor and I wouldn't recommend doing anything like this without a doctor's supervision and advice, 3) I'm taking epsom salt baths to pull out toxins and soothe my aching joints and muscles (1 cup of epsom salt and soak for 30 min), 4) I'm using an infrared sauna to try to detox in two ways - sweating pulls the toxins out through the skin and the infrared light itself is actually detoxifying, 5) I've been grounding/earthing as much as I can. I walk barefoot outside and I also have a grounding mat that I use when I can't get outside.
Thirdly, I'm working through stressors that could be allowing my body to continue to be inflamed. I'm starting to study meditation to understand how to better control my reactions to stressful situations - I've been using the "headspace" app, which isn't bad and has a lot of options for meditations and am reading a book called "Buddha Walks Into a Bar" to try to better understand things. I'm also working on learning the Emotional Freedom Technique (EFT), also known as "tapping" in meditation to help relieve some stress. I am doing some alpha wave meditation to try to calm my mind and get some restfulness since I don't sleep well and never awaken feeling rested.
Fourthly, I am trying to focus on my physical body. This part can be so hard due to the pain. There is research that shows that exercise and movement helps us heal and can decrease pain from autoimmune conditions, migraine, etc. I can't always keep up with a rigorous gym/workout schedule because of the unpredictability of the conditions I suffer with and I imagine you feel the same way. However, I have been working to do 10 minutes of yoga/stretching (3 rounds of sun salutations) every morning, with a few added stretches where I feel extra tight and an occasional planks and walks. As I have gained momentum with the morning routine I have noticed my joint and muscle pain has actually decreased by about 50%, though I'm not positive it is just due to the yoga or if it is a combination of the things I'm working on.
Fifthly, I started taking CBD every morning. I know you mentioned that your employer doesn't approve, but why do they need to know? If they do drug testing, there IS a risk that if you take CBD that it could have trace amounts of THC. However, if you have CBD derived from hemp, it shouldn't (no guarantees on how people label these though) come up on a drug test, as CBD itself is not a controlled substance. The CBD leaves my mind more calm and my muscles more relaxed. They also make CBD creams, though I'm not sure how effective these are since I haven't used them.
Lastly, on my really bad pain days (days when my head hurts so bad I lose my ability to speak and half of my body is paralyzed), I take high CBD gummies with THC in them. I've taken a lot of meds for migraine and these are the only things that have ever actually helped my pain. I'm still new to using these and am working to understand the dose that works for me.
I know that was a lot of information, but I really hope it helps you going forward. Good luck!
Paulla FetzekTeacher, Lighting Expert, & Office Professional
1.73k
07/19/20 at 9:24PM UTC
Hi Kimberly, WOW! I have considered my diet and may look into making tweaks there.
As for CBD... my company - like many others - can random drug test. In all my years they never have. Why would I tell them? Because while cannabis is legal in my state - it isn't legal in the country. And because I travel for my company, I am representing them when I do.
As for exercise, I'm not always rigorous - but I am active. I exercise 6 out of 7 days a week. Most of the time it's riding a recumbent bike. I have both an indoor and an outdoor one. I also try to do a bit of dancing now and again, though it's become MUCH less these days.
Thanks again!
Kimberly MoonClinical Research Professional
603
07/19/20 at 9:52PM UTC
Hi Paulla,
The diet could help things quite a bit. Also, there are a few documentaries about diet and changes in lifestyle to improve disease, if you're interested. "Fat, Sick, and Nearly Dead" is on Amazon and "Heal" is on Netflix. "Forks Over Knives" and "What The Health" were also very interesting and touch on autoimmune disease and how diet can help (I don't remember which platform they are on).
With regard to CBD, it IS federally legal (under 0.3% THC). Cannabidiol (CBD) is not the same thing as tetrahydracannabinol (THC). THC is federally illegal. I know some states have put their own restrictions on obtaining both THC and CBD. This article could help there: https://www.pbs.org/newshour/science/is-cbd-legal-heres-what-you-need-to-know-according-to-science#:~:text=Yes%2C%20purchasing%20CBD%20is%20federally,if%20they%20have%20a%20prescription. If your company does do random drug checks, I can definitely understand wanting to err on the side of caution there - that would make me nervous too! I have to travel a lot for work and, for me, I leave the CBD at home when I'm travelling.
Wow! It sounds like you get a great amount of exercise!
I hope you feel better and have more energy soon!
pd2hayes
16
07/15/20 at 6:09AM UTC
Unfortunately, I have gone to too many pain management doctors to name, I have extensive nerve damage in my back.
I'll give you the same advise I give someone considering any major medical decision like surgery or any other invasive procedures. Trust your gut. If that little voice is making you pause, listen. You know what you can handle, what you're willing to do(changing your diet, daily exercises, supplements, whatever), and where you are now. Only you know how much daily pain is acceptable. Also, always keep in mind you're the boss. Most pain management can only do procedures, and make their money doing them. If you feel they're over or under medicating, you need to loudly advocate for yourself.
I would research both Eastern and Western medicine. If you can find a DO, instead of a MD, you're more likely to find a Western doctor open to alternative treatments(acupuncture, reflexology) and a more holistic approach. CBD is a compound in cannabis and hemp that is showing promising pain management properties(it isn't a hallucinogenic.) I wish you the best of luck.
Paulla FetzekTeacher, Lighting Expert, & Office Professional
1.73k
07/15/20 at 12:42PM UTC
Thank you pd2hayes! As it so happens, my primary is a DO. And she isn't opposed to CBD. Which I would LOVE to consider.
Unfortunately, my company is opposed - still considering CBD an illegal substance (though it has been legalized in the state where I live).
I'm leaning on the side of going to see the Pain Mgt specialist, as I've never been to one before. But I'm going to finish out the chiropractor visits I'm doing now first.
Thanks again!
pd2hayes
16
07/16/20 at 12:03AM UTC
You can get CBD from Hemp. If you try a cannabis sourced CBD, just make sure it doesn't have any THC, the psycho active compound that makes you, "high." THC is also the compound that most standard drug tests test for, not CBD.
Heather Denniston
333
07/14/20 at 5:18PM UTC
I also suffer autoimmune disorders but they are largely in remission because of diet, supplements, fasting, exercise and a group called CURABLE (look them up) I work with people one on one as well and would be happy to talk to you but I would also encourage you to check out the CURABLE app and the group coaching they offer as well. (I am a retired chiropractor by the way. You would have liked me!?)
Paulla FetzekTeacher, Lighting Expert, & Office Professional
1.73k
07/15/20 at 12:49PM UTC
Thanks Heather. I had previously downloaded the Curable app and have tried it. Right now, it's not suiting what I'm looking for.
Appreciate your answer!
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