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Replies to "Hi, @coloradogirl -- you pose an interesting question. Let's see if any of our fellow members..."
@coloradogirl While I don’t have problems with my thyroid, I empathize with you in the chronic body ache. I have Fibromyalgia and when my symptoms first started, I felt similar to the feeling of heaviness and soreness that are associated with the flu. Then I started tuning in to my body and tracking where the pains were the worst. Lo and behold, I was diagnosed with Fibro. Coloradogirl, have you had any exam that may indicate fibro? What are you doing to get some relief?
Hi @sandytoes14 and thanks for the response. I have thought about fibro but it doesn’t seem like there are a lot of treatments for it, so I wasn’t sure if it was worth pushing my doc for yet another diagnosis. (I already have several…see response to Lisa and John below).
The main treatments for fibro that I’ve seen involve anti-depressants and I am trying to avoid those if possible because Zoloft made me manic. (It was fun….until the credit card bill came).
As for what I do for relief, that is an excellent question and I will admit that I really don’t have a good answer. I have a foam roller and inversion table. I take a lot of Epsom salt baths. I also see a chiropractor and acupuncturist regularly to address orthopedic pain and headaches, which helps at least keep the overall pain “burden” lower. For chronic pain, I just try to ignore it to the extent that I can because I don’t want to overuse OTC meds like Tylenol or Ibuprofen. (Especially the latter, we have a high incidence of heart attack and stroke in my family so I don’t want to raise my risk factors if I don’t have to). If it gets really bad, like it was earlier this week, I do take the OTC pain relievers.
A friend who has fibro actually suggested that I try medical marijuana for my pain (it’s Colorado so it’s legal here) but I’m not really comfortable with that either.
Any suggestions you have would be welcome. I’ve been living with this for years now and I have to admit that better coping strategies would really help improve my quality of life.
Hi @coloradorgirl, another possibility to help with the pain are some form of compounded medications that can be applied directly to the area where you have the pain. A compounding pharmacy or pharmacist can do this. We had a speaker at one of our Minnesota Neuropathy Association’s meetings earlier this year – Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, spoke to us about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He explained what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota. The other compounding pharmacy being the Mayo Clinic in Rochester. In Minnesota you have to be on the state’s list for chronic pain before you can get the stuff but one of our neuropathy association members actually used it with positive results for relieving the pain. Here is a link to the pharmacy’s website for more information:
Since you live in Colorado it may be easier for you to get a topical cream that will help with the pain/burning feet. I would check to see if there are any compounding pharmacies or a PharmD available close to you.
Hi John! I actually used to underwrite Pharmacists’ Professional Liability insurance so I know all about compounding pharmacies and PharmD’s. They are great and can be really very helpful especially for unique situations like this.
We did have a compounding pharmacy here in town but they were shut down by the FDA for some illegal practices. (Not sure exactly what happened, but I read that they were making things they should not have been). I think there is another compounding pharmacy that opened nearby, so I could probably use them. The challenge will be getting a prescription from a doc that seems to think it’s yet another symptom from my various other issues and not to be taking all that seriously.
Thanks again for your help.
@coloradogirl is it possible to talk with the pharmacy and see if they have any local pain doctors that have sent them prescriptions? Just thinking if a doctor is already prescribing compounded medications they may be more informed on their use and benefits (yucky side effects and brain fog from the standard NP prescriptions).
Just a thought…
Good point @johnbishop and definitely something to think about. I’m going to try again with my regular doc this afternoon and see what they say. The challenge with a topical treatment is there are times when the pain is over pretty much my entire body – it’s almost flu-like symptoms the way my whole the body aches.
If it was just the burning in my feet and tingling in my hands, that’s mild enough that for now I can ignore it most of the time. (It’s a nuisance but not terrible). The worst is when I get up in the morning. I’m so stiff I can hardly move and everything hurts for a good hour or more, unless I take OTC pain meds, which I’m trying not to do too often.
My chiropractor recommends CBD oil, which I’m also thinking about, but not sure if that’s the route I want to go at this point either.
You are correct that most medical treatment are anti depressants. Savella and Cymbalta are specific to Fibro. Some doctors prescribe Effexor also. SSNRI ‘s are most effective for many. Lyrica is also used, which may help with neuropathy. The complementary medicines you are using, i.e. Accupuncture and chiropractic have worked for me at different times. I was diagnosed six years ago and have found that treatments, including medicines that once worked, may not now. The same is true in reverse.
There are many folks who swear by CBD oil and cannibus. If you go to the search box and enter CBD oil, a good deal of results will come up. My apologies for not providing the link. I’m on my phone typing this reply.
Coloradogirl, from reading your posts, I can tell you are a good self advocate. I’m glad you found Connect. Please keep sharing with us!
I saw my PA on Friday and she did the test for fibro. I basically don’t have any of the trigger points, so it appears that’s not it. (She said we can leave it “on the table” but probably not the cause). She started me on Cymbalta and an anti-inflammatory medication that I can use when it’s particularly bad, so at least I have some treatment options for now. Next step is an EMG test for nerve function, focused on my legs to see if there is a lower back problem or something.
She also tested to see if I have any numb spots on my feet due to neuropathy and luckily, I do not, and my balance isn’t effected.
The process of starting on Cymbalta has been a bit interesting – not my first go-round with anti-depressants, so it’s familiar but not much fun. At least we have a plan for now and hopefully the Cymbalta will help. So far, it’s not doing much for the pain but it’s only been a few days and I understand it can take 4-6 weeks to really show an effect.
@coloradogirl I’m glad you have some treatment options. Two years prior to being diagnosed with Fibro, I was tested but, like you, had no trigger points. It wasn’t until I had trigger points that my Dr put me on Savella. It worked for a while but now I take Cymbalta 60 mg once daily. I surely hope Cymbalta helps you with minimal side effects.
You may find this post helpful.
What distracts you from pain https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/
Yes, although with the many medication changes, I suspect I may be hyperthyroid on the latest dose. There is a supply problem with NatureThroid so instead of getting the dosage I needed, we had to go to a higher dose of Armour. I have to wait six weeks for the next testing to be sure, but I’m feeling a bit hyperthyroid. At least my hair isn’t falling out yet….and the body aches continue.