Frustrated I even may have to choose

[kap]

So I am considering medical cannabis after being through so many meds as I'm sure everyone here understands. I am just fed up with try this one, try that one. What I have been taking almost since diagnosis almost 2 1/2 years ago isn't cutting it anymore, whether it be side effects or lack of management of symptoms. I have taken a year off of work for two surgeries and to decompress from being in a some difficult job situations since diagnosis. Plus covid and all it was; I am a nurse. I loved it, didn't become one until a bit later on in life.

Before I even set up a medical marijuana appointment I am doing my research. My husband is absolutely amazing, supports me 1000% in being a "non traditional" medicine patient. However, I am looking at quite possibly having to give up being a nurse as well as other liberties in order to take care of myself. Employment protection in my state has major contradictions with our nurse practice act. I can use CBD, but if tested which I will it cause issues up to and including loosing my license. Of course, that leaves out the most important part of simultaneously using THC for real symptom control.

Anyone worn these same or similar shoes? I'm just so extremely frustrated that I should even have to choose.

 

[cookiebaker]

Hi Kap, and welcome

that you even have that choice is more than I have.. I can get CBD, but not medical cannabis.

But, as you have already found out, pain meds do not really help us all that much.. and it isnt for lack of trying, for sure.
However. There are many things you can do to try to manage your symptoms WITHOUT drugs, or even cannabis. It is not a "quick fix" by any means, but many of us have found that dietary changes can make a BIG difference in how we feel. It takes time, and effort on your part, but if you want to keep your nursing license, I think you should at least try...
Lots of good info in this thread:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

the biggest challenge is cutting whatever for long enough to actually prove whether or not it helps. at the bare minimum you need to go 3 weeks, a month is better.
For me, gluten in certain products is a big trigger for ibs issues.. but other things I can eat with no issue.. like whole wheat bread.. it has gluten, but for some reason it does not trigger my symptoms - so experimentation is vital, but takes time.

 

[sunkacola]

Hi Kap. I don't understand why CBD alone would cause problems for you since it is completely legal everywhere in the US as long as it is pure CBD and no THC. Can you explain this, because I feel it's good to know these things, especially since I often give advice in thei forum..

In my experience and that of many others, CBD alone is of minimal assistance for pain especially fibro pain. If, however, it is 1:1 with THC it can be quite effective, and I use that myself.

My feeling is that if you would be running a professional risk that you don't want to take if you tried THC/CBC, then try a whole lot of other things first, as Cookiebaker mentions above. You may be able to reduce your pain intensity and frequency by dietary changes, rest, exercise, mental attitude, and a lot of other things y ou can do and avoid that whole thing entirely.

 

[JayCS]

I get it - CBD being legal doesn't mean that it's considered safe for use in jobs with responsibility.
And regular drug tests being done will from what I know lead to that sort of trouble, even without THC involved.
But isn't thinking about THC if you haven't even tried CBD the 2nd step before the first? Cos:
I didn't tolerate even a single 2mg drop of CBD - dangerous even on foot, let alone taking care of anyone.
So trying that alone in an opportune moment would to me be the first step on that path, if it were worth it at all.
However I like the others suggest looking further instead, esp. in your situation....
I've tried 100s of treatments, use something like 100 every day, and am continuing to find new effective ideas.
Whilst meds didn't even work once, but most harmed immediately - quickly thru and all the better for it.
My ex-pain docs and I did consider MMJ, however as CBD harmed me it was clearly not justified - no "miracle".

 

[kap]

Hi Kap. I don't understand why CBD alone would cause problems for you since it is completely legal everywhere in the US as long as it is pure CBD and no THC. Can you explain this, because I feel it's good to know these things, especially since I often give advice in thei forum..

In my experience and that of many others, CBD alone is of minimal assistance for pain especially fibro pain. If, however, it is 1:1 with THC it can be quite effective, and I use that myself.

My feeling is that if you would be running a professional risk that you don't want to take if you tried THC/CBC, then try a whole lot of other things first, as Cookiebaker mentions above. You may be able to reduce your pain intensity and frequency by dietary changes, rest, exercise, mental attitude, and a lot of other things y ou can do and avoid that whole thing entirely.

Well, it's the wording in the Minnesota Nurse Practice Act. I'd send a link but know that it's against the forum rules. I will give this: (9) Actual or potential inability to practice nursing with reasonable skill and safety to patients by reason of illness, use of alcohol, drugs, chemicals, or any other material, or as a result of any mental or physical condition.

The words "potential inability". That is so far open to someone's interpretation that if someone knew or through a positive employment drug screen of which results should be confidential I could loose my license. They also accept financial assistance from medicaid, and that federal aspect may open up liability even more.

I have tried many, many things including diet, the right amount of exercise, meditation, coaching myself into a better attitude and enough medications for my liking. It is getting to the point of where I want to just live better without the side effects I keep having and rely on Tylenol, Celebrex if possible with medical marijuana. And CBD alone isn't going to address my concerns, as you said. So been there and done that over 2 years now.

I appreciate your reply!

 

[kap]

Today has turned out to be a difficult day, as in unusually bad. So forgive my lack of replies, for now.

 

[cookiebaker]

Today has turned out to be a difficult day, as in unusually bad. So forgive my lack of replies, for now.

no explanations are necessary here - we all get it.

Minnesota, huh? that makes us kind of neighbors - I am in Wisconsin..

 

[kap]

no explanations are necessary here - we all get it.

Minnesota, huh? that makes us kind of neighbors - I am in Wisconsin..

Well howdy neighbor! And I like your signature line. I am fighting misery, kind of refuse to go there at least in my head anyhow.

 

[kap]

Anyhow - I have backed off the sweets about 50%, although that never seemed to be a trigger. Last night for dinner I had pizza after a bad day and felt better last night. Diet doesn't seem to make any difference after paying attention to correlation and looking further. Light stretching - a godsend. Oddly I can tolerate massage therapy but my therapist cut tendons in her hand and has been out for some time now. Blocking out the world with prayer and meditation, relaxation techniques help too. Several other things too from my nursing back pocket as non-pharmacological therapies. It's too much physical activity (my fault there but life demands it sometimes) and stress, mental and especially emotional stress. Essentially - life, and not always things I can manage or control. Unpredictable situations and an unpredictable brain.

Just want as much of my life back as I can get, but know that will never be 100% and symptoms change over time. There's no magic bullet, but better or much better is...better!

 

[cookiebaker]

Yeah, we all would like our lives back, even partially back to what it once was. Some have had reasonably good results by really watching the diet.. and as we know.. just because something used to be ok does not mean it is now.. just like for me, never used to have a problem with hamburger/hotdog type buns.. ate burgers, sloppy joes, pulled pork sandwiches, brats, etc all the time... not anymore.. I will suffer greatly if i eat the bun.. can eat the fillings with no problems, so it is definitely the bread aspect.
I used to enjoy doing yard work (mowing on a rider, pruning trees, etc) it was my mental therapy.. now it just wipes me out - for days..

I have been down the pharmacy road myself the last couple of years.. and like you, most did nothing, or had unwanted side effects.. I am currently trying out another one that has had some limited success for others (not enough studies done) - only on my 3rd week, still in the building up stage, so kind of hard to tell if it is helping yet or not, but in general, i have felt slightly better recently... not sure if you have tried it or not - low dose N? (forum software will flag the common initials or the main word, so... )

 

[kap]

I've tried 9+ meds (can't remember exactly which ones without looking them up), including N. Not gonna try A. My neurologist who I won't see again said it is impossible for me to have side effects within the time limit I stated. Okee dokey then. Why do they do that?? Side effects just weren't tolerable, all of the ones I have tried aside from 1-2 have hit me like a ton of bricks fairly quickly. Ones I am not willing to suffer through.

Before I go any further with foods I need to get off of G so I can sort it all out without wondering what is what.

 

[cookiebaker]

I've tried 9+ meds (can't remember exactly which ones without looking them up), including N. Not gonna try A. My neurologist who I won't see again said it is impossible for me to have side effects within the time limit I stated. Okee dokey then. Why do they do that?? Side effects just weren't tolerable, all of the ones I have tried aside from 1-2 have hit me like a ton of bricks fairly quickly. Ones I am not willing to suffer through.

Before I go any further with foods I need to get off of G so I can sort it all out without wondering what is what.

yeah, i complete understand that.. the N was just a thought..
I tried gabapentin, and UGH.. it was awful.
nortriptyline was even worse. and like you, i would have to look up the others, LOL - too many to remember.
PCP had me on sertraline for several months (for anxiety).. but I asked to be taken off it.. side effects, of course.. not as bad as some, but bad enough..

But yeah, best to start anything "new" with a clean slate..

 

[sunkacola]

Kap ---thanks for the clarification. I think that law or rule stinks but that doesn't help if it's there, does it?

All I can recommend is that you keep trying. And trying. If it's been a while since you tried a certain diet modification, try it again, maybe for a longer time this time. Just keep experimenting in whatever way seems possible to you. You can find things that help, although they may not help forever, and we all need to remember to be flexible and willing to try something else.

I applaud you for not just going the route of taking a lot of drugs. It always makes me sad when someone says they just do that and won't consider alternatives, because we know that just taking more drugs only makes things worse and can even shorten a person's life. Everyone has to make their own choice about their life, though.

The thing about cutting down on things like sugar is that you will actually never know if it is a trigger or not unless you cut it out entirely, completely, and for a long enough time for your boy to clean out the residual. This means reading all labels and eating nothing with refined sugar, high fructose corn syrup, or any other sugar in it whatever. It's in salad dressings, breads, condiments, many meats, anything processed; it's in so many things that you have to be diligent. If you did that for a month you would find out for sure if it really is a problem for you or not.

Cutting down sweets by 50%, while definitely a good thing for your general health, will not tell you if it is something that exacerbates your pain and other symptoms or not. You have to go all the way, and I recommend trying it. similarly, if you have made diet changes, but have not made them for a long enough period of time, or have not eliminated the food item completely by reading labels and so on, you have not really tried it in a way that will inform you.

AND, I agree with you completely that going off the medication you take is an excellent precursor to trying more dietary changes because as cookiebaker says...clean slate.

I hope we can encourage and support you and help you find things that will do some good for you.

 

[Cutiegirl]

I have been off sugar for 4 months and it has made a huge difference for me. Interestingly if there's even some 'hidden' sugar in something I eat, my body tells me (always 24 hours later) with pain in my fingers. I don't even realize it until I catch myself wringing my hands...I am actually massaging my fingers due to the pain. Then I know I ate sugar accidentally.

 

[JayCS]

My neurologist who I won't see again said it is impossible for me to have side effects within the time limit I stated.

Welcome to a whole new world of medical impossibilities, doc... - I remember the first doc saying that to me in my 20s, an orthopedist about a back problem, which later PTs corrected that my back/leg reaction was possible.
I'm similarly fairly quick with med reactions, but also my quickest reactions are my gut to food inside of sometimes 30 minutes. (The slowest tomatoes: My colon stings 24 hours later.)
However reactions that quick once again make me think they might be immune system reactions - MCAS.... Then it might well be the excipients, not necessarily the active ingredients you're reacting to. In my case I think it's the active substances, but my reactions to meds (skin, gut, seizures) do take an hour or 2 to develop.