@teetee7 Sending positive thoughts your way! Hope you feel better!
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@ericvnelson @elained I'm sorry to hear you both are having such a hard time and are having difficulty finding any hope. Hopefully this community and the suggestions and experiences described by it's members lead you to doctors/treatments that will help you!
I will be 32 in April, and was only just diagnosed with small fiber neuropathy this past summer (causing autonomic nervous system dysfunction on top of myofascial pain syndrome, fibromyalgia, spine damage from a 2011 car accident including a syrinx and 3 disc problems, a tumor on the T8 spinal nerve, [among other things]).
Starting in November it seemed like my symptoms started progressing rapidly, more intense/widespread weakness and numbness, worsening pain that was already quite debilitating, inability to keep weight on (the initial symptom that sent me to the doctor was losing 50 pounds in a month a couple years back. I put 15 back on, but I've lost it and continue to lose weight), terrible hot sweats alternating with chills, balance issues with a fall, a separate syncopal episode, and I'm sure I'm missing other symptoms.
When you two were first were diagnosed, did you have minimal symptoms? When I was diagnosed, I already had troublesome symptoms and was set up with a physical therapist. With all the other health issues I have/have had, I'm thinking I've had this much longer than I thought, and that my symptoms went unnoticed/attributed to my other conditions. I feel like I completely missed that period of relatively 'normal' physical ability. I played hockey year round, ran track, skied, hiked, lifted weights (all except year round hockey continued through college)… I get tired typing now and have difficulty playing guitar or writing. I still can walk unassisted, but the longer I am in a sitting or standing position, the more tired I feel and the worse my pain gets… I often lay in bed, on the couch, or on my monster giant bean bag as taking the weight off my spine in that position is the only position that doesn't make the pain worse. I feel like I'm going to need a cane soon to help my balance, but I don't know how that will work out as my arms go numb and constantly feel weak (I took out an empty dinner plate the other night and had to put it down after a minute).
Elaine, can I ask how long after your diagnosis 9 years ago your symptoms progressed to the point of needing leg braces and a walker?
Have either of you tried IVIG, plasmapheresis, or corticosteroids?
So I looked up PA's medical marijuana program (appears more inclusive for potential patients), and it looks like they have quite the range of dosage forms that NY doesn't have, especially actual dried plant. I have no idea how familiar you are with marijuana so I apologize if the detail I'm going into is unnecessary (dried plant is what one would normally think of when you hear marijuana, but with the advent of different extraction processes that produce different oil, waxy, buttery, and harder [think malleable jolly rancher] 'shatter' substances that can be smoked or vaporized, the actual 'buds' of the plant that Cheech and Chong smoked are now commonly referred to as flower. After a cursory review of PA's site, I didn't see anything that specifically outlawed smoking it (actually combusting the plant material), but instead said 'for administration by vaporization or nebulization,' (oil would be used in a nebulizer similar to those used by patients with different respiratory disorders, whereas vaporization uses a 'vaporizer' which heats the plant or oil [depending on the vaporizer some can only accommodate one, while others have special chambers to vaporize both] to a point where THC, CBD, and other cannabinoids and beneficial terpenes are literally turned into vapor [think boiling], but without being so hot as to ignite the plant itself and produce noxious smoke). Inhalation is generally considered the fastest and most concentrated way to consume marijuana (edibles are a different story that I admittedly don't fully understand; 'pot brownies' are known to get people uncomfortably high with bad paranoia if taking to much or if you aren't used to marijuana), although smoking is the worst for your lungs as you can imagine, and vaporization is still not fully researched… since it doesn't contain the combustion products it's considered safer, but the heated vapor can irritate your throat and lungs after prolonged use (it is possible to combine a vaporizer with a water pipe [bong] or other apparatuses so as to cool the vapor and help remove any oily/tar like residue from the vapor). From what I understand, in NY, the oil is pre-filled into single use cartridges built into vaporizers that is unique to each dispensary so there isn't the ability to utilize additional paraphenrnalia or specialized high end vaporizers. Tinctures (in the pharmaceutical compounding sense) use ethanol to extract the active components into a concentrated liquid. Tinctures, pills, 'liquid' (it doesn't specify anything about it, so it's too vague for me to know what the exact dosage form is) and oil should all be able to be taken orally. And of course the topicals you would just apply to the affected areas (this could be difficult if you have a restricted range of motion or areas of pain in your back where you can't reach. Theoretically you could have someone apply it for you with gloves on (I'm not sure if caregivers are allowed to 'administer' any of the products to you [example: pharmacists are not legally allowed to take a pill out of a patient's bottle and put it in their mouth if they have physical difficulty, but nurses and doctors can]). Bottom line, if you want the healthiest option, avoid inhaling. This stance is controversial as many people believe vaporizing is healthy, however, inhaling trace amounts of oil can theoretically cause a specific type of pneumonia and/or cause damage to the anatomy of the lungs depending on how long you've used it. There is not enough research out there yet to give a very good picture of the long term effects of vaporizing. It is one of the most popular methods of delivery out there right now, so it is up to you. Again, since it doesn't actually combust the plant, it's not like smoking it or a cigarette with the additional noxious fumes from the burning plant material, and there are ways to filter/cool down the vapor.
Your best bet is to discuss the options available to you with your doctor, along with the specific reasons/symptoms you're using medical marijuana along with your goals for treatment with it. He or she should be much more knowledgeable on the topic than I, although as I said before, this is relatively new, and long term studies on health impact and adverse effects simply don't exist as federal funding is a gray area since it's still considered a DEA schedule I narcotic (street drug with no medicinal value and high abuse potential).
The other major important factor to consider is the strain of medical marijuana you get, along with the percentages of THC and CBD. THC is the psychoactive component, but also is attributed as being a pain killer and relieving spasticity. In NY, three oil preparations must be available at each dispensary (though the exact concentrations are not regulated and vary from one to another), 1. High THC, Low CBD; 2. High CBD, Low THC; and 3. 50% THC, 50% CBD. Since plant material is available in PA, many different strains with different concentrations of each could possibly be available; you'd have to ask your doctor and the dispensaries. High THC can cause anxiety and paranoia in some people, whereas CBD is good for anxiety. Marijuana comes from Cannabis indica, Cannabis sativa, and varieties of hybrids of the two. Indicas are generally known for a relaxed 'high', with sedation and strong appetite stimulation. Sativas are known for a more 'heady high' while being mood elevating and giving the user energy (marijuana users who use during the day typically are using sativas or sativa dominant hybrids). Once you figure out your goals of treatment and symptoms you want to relieve, you can work with your doctor, dispenser, and even research different strains (and learn about marijuana) on websites like leafly dot com.
Any THC containing product will still have the same rules as recreational marijuana including that you cannot and should not operate a motor vehicle, or heavy machinery while under the influence or while you suspect you may still have some affect from it. Common sense things.
Medical marijuana has provided many patients with amazing results and relief and resulted in a much greater quality of life. The pain-killing, anti-anxiety, anti-depressant, stress-relieving, anti-inflammatory, sedating and sleep inducing, and appetite stimulating effects can be quite drastic (in an obviously very positive way) in patients with serious health conditions where other treatments have failed.
I hope this provided some initial information for you to at least know what to research and talk to your doctor about! Good luck with your treatment and I hope it works well for you! If you would, please let me know what you end up trying… I have yet to get my card here in NY as the actual product is too expensive for me. I am very interested in how it works out for SFN!
I'm honestly not sure which post you're referring to; I apologize. Are you referring to the post that focused on buprenorphine and in the 2nd paragraph used marijuana and synthetic cannabinoids as a rough example of partial/full agonist medications?
If you're asking if marijuana is medically ok for you to take, that is something I cannot legally tell you; I'm not an MD, nor have I met you as a pharmacy patient.
If your question is concerning the law, on the other hand, it depends on which state you live in (keep in mind that even though many states have legalized medical and even recreational marijuana use and others have decriminalized possession of marijuana, it still remains illegal at a federal level which means, technically if the DEA were so inclined, you could have a medical marijuana card from your state and still be charged federally with a crime, but this, to my knowledge, does not happen. Marijuana usage by medical patients with valid state licenses/cards is not a concern of the DEA at the moment, they do not have the man power to enforce it, nor have they shown any interest in doing so [there are strict regulations on who qualifies for medical marijuana, what forms are legal, how and where to obtain it, how and where to use it, and this all varies state to state]. I have not heard of any instance of a medical marijuana patient being charged federally. If anything, the DEA medical marijuana focus is on state sanctioned dispensaries or growing operations that aren't following protocols such as not carding, providing more than is allowed, or distributing across state lines… not the patients.
The product I said was made illegal was a synthetic cannabinoid that went by the street name 'spice' and went under the radar as it was marketed as incense and not for human consumption, but was being smoked. The original synthetic cannabinoids that were being marketed as products like spice were made illegal, and the DEA constantly monitors any attempts by illicit chemists (think Walter White) to create similar chemically similar entities. These synthetic cannabinoids were not found in marijuana and were extremely unsafe. THC (the psychoactive chemical in marijuana) and CBD (the popular new cannabinoid product being sold [not FDA approved or monitored meaning exact strengths aren't definitive, nor are the claims verified. Labels of CBD products are not regulated by the FDA. It is important to do your research on CBD as to which products are reputable, have had independent labs evaluate them, and have a user base that has at least anecdotal accounts of working]) are both natural cannabinoids found in marijuana plants. CBD is currently legal because, unlike THC, it is not psychoactive, and it is derived from industrial hemp plants, not marijuana plants.
If you are in a state that has legalized medical marijuana, you go through the proper steps to register as a patient and obtain all necessary paperwork/licensure, and follow your state's rules regarding obtaining, transporting, and using medical marijuana products, you aren't going to be arrested. Each state that has legalized medical marijuana has clear guidelines on what is necessary to become a legal patient and how to go about each of those steps. Your state government should have this information posted on it's .gov page (NY's, for example, is on it's health dot gov site). I don't know what state your in, but I live in NY which does things a bit different (we're a liberal state except for medication and drugs, which they seem to do things differently. Benzodiazepines are classed as a DEA schedule II narcotic despite them federally being classed less strictly. As far as medical marijuana goes, no plant materials or edibles are allowed. Smoking (combustion) is also not allowed. Currently, the marijuana that is being cultivated undergoes an industrial extraction process to produce oils for either vaporizing or for use in compounded capsules (how they can rationalize this as different from edibles is a little ridiculous to me, although I assume it is to prevent marketing, appeal to, or accidental ingestion by children).
If this hasn't answered your question, or if you need help in finding your state's regulations, please message me back!
@stulerner As many people are coming here for advice, I feel it necessary to clarify one thing you said in your post: "It's a low-grade narcotic." My major was doctor of pharmacy and I tend to get pedantic when it comes to stuff like this so please don't take offense; with the current opioid epidemic, I feel it's necessary to make sure correct information and proper education are made available.
Buprenorphine is a partial opiate agonist (why some people think it's safer, less strong than other opioids). To give an example of the difference of partial agonists and full agonists, consider marijuana and synthetic cannabinoids known on the street as 'Spice' : THC in marijuana is a partial agonist at cannabinoid receptors and once concentrations reach a certain level, no more drug binds to receptors (no one has ever died from just marijuana). 'Spice', or synthetic cannabinoids are often full agonists, and the more one takes, the more hits receptors and it causes fever, psychosis (anecdotes from nurses and ER staff describe extreme aggression, dissociation, and cannibalistic actions [those stories you hear about high people taking bites out of their significant others are not urban legends, they're real and a major reason why the product that was once available at gas stations is now illegal). This is NOT a perfect example… the fact that buprenorphine is only a partial and not a full agonist DOES NOT mean that it is safer and unable to kill you. Any number of factors can cause it to be fatal such as respiratory depression from mixing it with other CNS depressants, being abused/being taken by an opiate naive patient, and the list goes on. I'm sure your doctor and or pharmacist counseled you on this, but be sure to dispose of the used patches appropriately by folding them (adhesive and drug side in the center) and disposing of them in a manner that prevents them from accidental exposure to anyone or from trying to abuse them. You'd be amazed what desperate people who are addicted to opiates will do to avoid withdrawal.
Even though buprenorphine is only a partial-agonist, its affinity for opiate receptors (how strongly the drug binds to the receptor) is so strong that a patient taking buprenorphine who finds themselves in severe pain from an accident or needing surgery, commonly used opiates like morphine cannot knock buprenorphine out of the opiate receptor and will have no effect. For this reason, ERs and hospitals have been known to keep an opioid called sufentanil on hand. Sufentanil is 500-1,000 times stronger relative to oral morphine (fentanyl is 50-100) with a stronger receptor affinity so that it can knock buprenorphine out of the receptor and provide analgesia to the patient. This is a very complex issue for anesthesiologists as it's not an every day issue they run into, nor does every hospital carry sufentanil. They need to take into account a patient's weight, the dose, route of administration, and length of time a patient has been on buprenorphine (possibly even obtaining drug/drug metabolite concentrations from blood/urine if time allows and the situation calls for it).
Sublingual buprenorphine is 40 times stronger relative to oral morphine; not a 'low-grade narcotic' by any means (and the term 'low-grade narcotic' is misleading; it's not medically descriptive nor is it a term that medical professionals use. It's vague and can lead one into, wrongly, thinking it's describing strength, binding affinity, risk, side effects, abuse potential, addiction potential, etc. It does not attempt to describe any one characteristic of any opioid and is dangerous). It carries the same risks, addiction/abuse potential as other opioids. To compare, oral oxycodone is 1.5 times stronger than morphine.
(Sublingual absorption of medications, very generally speaking, is similar to transdermal in that it bypasses the gastrointestinal system and is absorbed into the blood stream.)
Buprenorphine is expensive and often needs a prior authorization as it is not usually covered by insurances (I started off on sublingual buprenorphine until I had to switch insurances). Double check with your insurance company if a doctor says they submitted a prior authorization and it was denied… mine is an isolated case (I've worked in pharmacies since I was 16 [I'm 32]), but the doctor who prescribed it for me was understaffed and I found out from my insurance company that he/his office did not submit a prior authorization despite telling me he did and it was denied.
Many people think sublingual buprenorphine is Suboxone (Suboxone is buprenorphine AND naloxone and used for opioid dependence; solo sublingual buprenorphine (Subutex) does not have the opioid antagonist naloxone in it).
It's awesome that transdermal buprenorphine (Butrans) has provided you the level of pain relief that it has! I hope you don't take offense to my post or think I was singling you out to pick on. I just joined this group, and have made similar posts as I worry about misinformation being spread; most especially when it's referring to opioids.
For more information on transdermal buprenorphine (Butrans), talk to you doctor, pharmacist, and/or navigate to butrans dot com.
(I have never worked for a pharmaceutical company in case anyone had concern I may have a conflict of interest; I neither promote, nor discourage opioid use in patients who are deemed medically and psychologically appropriate for them and without a personal or family history of addiction of any kind. Before taking or discontinuing any medication, talk to your doctor/doctors and pharmacist about their risks versus benefits, any contraindications you may have, adverse reactions you may experience, and potential interactions with other drugs, food, or supplements you may be taking).
I will try that out for sure… thank you for the suggestion! I've only had one syncopal episode, with no prodromal symptoms and my blood pressure has always been ideal, however even with drinking a lot of water, I'm clinically dehydrated (that with vitamin deficiencies, you'd think my kidneys weren't functioning properly, but MRIs, a bunch of urinary analyses, and blood work all indicate they're normal). Still have to figure out the cause of those. I'm hesitant to drink too much extra water right now as I'm taking salt tablets in order to retain more water and don't want to go overboard and have problems from the other side of the spectrum, but once I'm off of them, I'll try more daily. I have already been grabbing a glass whenever I get tachycardic
I don't remember it, but my parents watch it all the time so I'm sure I have… I'll have to keep an eye out. I went 3 days without sleep this week and finally crashed yesterday (Sunday morning) and just spent all day in bed (the one good thing about being dehydrated and taking salt tablets to retain water is that I don't have to get up to pee as frequently and can just be lazy in bed). I didn't take the ibuprofen, though, and what ended up getting me moving around was the sweats/chills. I've taken two 600mg doses of ibuprofen since. It took some time, but so far (fingers crossed) it's seem to normalize a bit (could also be placebo effect, although, as you know, the sweats/chills are miserable and I highly doubt I'm just 'tolerating' them better [or maybe my mind just wants so badly to have found a treatment it's tricking me lol). I think I forgot to mention in my other reply about costochondritis, I haven't found an effective treatment yet. I've tried lidocaine cream and patches over one area, but it didn't seem to have any effect. I'll keep researching it and see what I can find.
I just wrote a long response to someone else and my hands/arms are going numb, so I apologize for the brief responses, but I wanted to make sure to reply. I'm sorry to hear about your accident and how severe it was. Thank God indeed your husband knew not to move you, and was able to resuscitate you! My neurologist's focus on my SFN has been an autoimmune cause due to my history with other autoimmune issues, but I've only recently read research about physical trauma being the "starter's pistol" that sends SFN off to the races. I grew up playing hockey, football, and skiing, so I have had quite the history of hard impacts (and repetitive smaller ones which doctors are now saying may be even worse for CTE than the concussions they were focusing on). When I mentioned one day the (at least) three concussions I have had to my parents, they told me I've never had a concussion… (1. Jumping off a ski lift from a DECEIVINGLY high height and temporarily losing consciousness, 2. Getting illegally cross-checked from behind after the ref blew his whistle in a hockey game; I was facing my teams bench and didn't see the kid charging behind me so of course I had no luck of bracing for impact… the way I got hit and lack of anticipation made me lose my balance and I ended up slamming my head and having it bounce back off of the top of the boards, waking up flat on my back 3. Head to head contact while playing no pad/full contact football in college… it was right before break and I don't remember my parents driving me home and kept vomiting); I'm not an MD, but I've studied like one and I'm quite confident each of those were concussions. My car accident was extremely violent. I was speeding in bad weather, way faster than I'd like to say, and when my Subaru Legacy's two right-side tires hit a mixture of rain and sand, the car began to lose control while entering an S-curve. I was able to slow the car down to 65 MPH and regain control, but it was too late and the car hit this weird walkway that consisted of two walls, one concrete and the other railroad ties rebar'ed into the ground; 65MPH to 0 instantly, front and side airbags all deployed. I walked away from that… in fact I was in shock and the first thing I did was get out to examine the damage, then I googled the local police department's number as I didn't want to bother 911 since I just seemed shaken up. Five police cars, a fire truck, an ambulance, and a sobriety test later, lol, I was encouraged to be taken to the hospital, but I was already stressed and just wanted to be home. The next morning symptoms set in, and I couldn't move my neck without severe pain and couldn't lift my right arm above my waist. Since I couldn't move my neck, it was impossible for me to get up from laying in bed and adapted a way to roll myself onto the floor and crawl to the bathroom (I eventually began sleeping on the couch). I tried to 'buck it up' but after four days without sleep and intractable pain, I went to the ER where they took a chest X-ray, and I was given a prescription for over the counter strength naproxen which I crumpled up and threw in the examining doctors trash can on the way out. Vitamin B's, D, and E have been deficient and I've noticed that when the D and one of the Bs began to normalize, my hair stopped falling out, and at my last haircut, the woman who cuts my hair commented that it had been growing in thicker. Stress, I'm sure, has also played a major role in my hair loss. So far for the rib pain (I'm not convinced it's typical costochondritis, but rather a symptom of SFN) I was prescribed ibuprofen (I don't like taking NSAIDs anymore since I took ibuprofen at its max dose for a decade) 600mgs four times a day, which I often skip doses, or days, because of my loss of appetite and gastroparesis leaves my stomach empty… a no no for NSAIDs as it's begging for an ulcer. I meant to message you and say, my chills/sweats are back: theory squashed, but I haven't taken the ibuprofen regularly. I'm going to try my best to at least have a super small snack so I can take it all four times each day and see if it helps the rib pain and sweats/chills (it's probable it has no effect, but after hearing you mention the toradol and my anecdotal experience with the ibuprofen, the connection seemed plausible, however, I bet most SFN patients are on or have taken one NSAID or another and doctors would have put it together by now. Who knows). That ended up longer than I thought, but I can't feel my arm, lol. Have a good one for now!