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Medical cannabis for making existence more bearable?

Discussion in 'General ME/CFS Discussion' started by lemonworld, Feb 15, 2017.

  1. lemonworld

    lemonworld Senior Member

    I'm bed bound, except for trips to the bathroom and kitchen. I can barely talk with people. I'm going out of my mind living like this. I can use the computer, but reading and concentrating is very hard, so I can't really do any fulfilling acitivites. My mental health has become shit lately. Depression, anxiety, and just generally a mess, which isn't surprising I guess, considering my cirumstances. Life is just overall very unbearable.

    I have constant lactic acid burn in my legs, which is driving me mad. I wouldn't really call it pain, and I don't feel like it deserves pain medication (I'm worried about causing more harm to my body with medication), but it's bad enough that I can't stop thinking about it, and it's impossible to rest. I'm just doing nothing, but not resting either.

    For years I've been working really hard with diet and supplements and any lifestyle changes that could possibly give me some relief, but nothing is working so far and I'm just getting worse and worse. I'm desperate. I still have some things left to try, like LDN, and if that doesn't work I have hope for things like rituximab in the future. Therefore my main priority right now is just finding ways to make it through each day. But it's becoming unbearable living like this.

    I know it's possible to get medical cannabis in Norway, though I think it's a difficult and long process, so I don't know if it's worth trying to get it. (And my doctor won't even give me perscription for B12 injections, so I don't know how I would ask for something like this, but maybe it's worth a shot.)

    What I'm thinking is that it might be a good thing to have on hand, for the most unbearable days. What I hope to get relief for is the lactic acid burn, and anxiety and just being able to relax more. As well as maybe making social situations less demanding, as it might help with anxiety and not make me excert myself so much.

    Anyone have experience with using it?
    Is there other things you would recommend instead?
    Last edited: Feb 15, 2017
    erin, MeSci, ahmo and 6 others like this.
  2. charles shepherd

    charles shepherd Senior Member

    lemonworld likes this.
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Toronto, Canada
    You may find indica strains of medical marijuana helpful:

    "Indica strains, on the other hand, have an opposite effect. They provide a couch-lock” body high that is well suited for nights when you just want to wind down and be in your own head. Indicas are often used to relieve stress and aid with sleep...

    Indica is commonly used to treat insomnia, chronic pain, muscle spasms and nausea. Indica may also be useful for fibromyalgia, multiple sclerosis or lupus."
  4. sorin

    sorin Senior Member

    Sorry to hear that you feel so bad. Unfortunately I can not give any advice on a supplement that could help. I want to ask you when your disease started and how it progressed through years? Was so bad from the beginning or it deteriorated in time? Do you have the symptoms described here for CFS? Did you test for CMV, EBV, other herpes viruses?
    All the best,
    lemonworld likes this.
  5. lemonworld

    lemonworld Senior Member

    I got ill 9 years ago, after mono. It's been a slow worsening since then. I was made to continue school, and was able to somewhat keep going, until 3 years ago. The last 3 years I've been almost completely bed bound and getting worse every month. Nothing has helped so far. I have an ME diagnosis, and most symptoms I think.The cognitive symptoms are the worst challenge for me, as well as severe fatigue, muscle weakness and PEM, digestion problems, lactic acid, sometimes joint pain, poor sleep, insomnia in periods, the wired but tired feeling/not able to rest properly, nausea and no appetite, temperature problems (over heated), dehydration.
  6. Jessie 107

    Jessie 107 Senior Member

    Just been reading your post and just wanted to say I'm so sorry to hear you are feeling like this, your post also worried me too as I am also getting worse and dread becoming housebound or bed bound, I really feel for you and hope your situation becomes more bearable for you. I can't help you with the cannabis question, but it is something that I have been thinking about too.
    I am struggling with the depression I now have because of the limitations on my life since I have been ill, my world has become much smaller and I now can't do very much at all without becoming more ill. To be honest I don't know if I can live like this for the next God knows how many years, it's just not a life. Sorry if this isn't a very positive post but I am so very down with it all at the moment and really feel your pain, you are not alone in this, please keep posting.
    MeSci, Diwi9, Hutan and 1 other person like this.
  7. lemonworld

    lemonworld Senior Member

    Yupp I feel the same. Hope things get better for you somehow, or that there will be things to give you strenght along the way. High five :hug:
    MeSci likes this.
  8. erin

    erin Senior Member

    I'm on CBD oil, I had 20 50mg suppositories and 1 drop orally per day so far and I feel better. Pain is significantly reduced, skin conditions are %40 better, brain fog better, %80 relaxed, sleeps %100 better quality, carb and sugar cravings lessened, still fatigued though. I also feel it magnifies the effects of medicine. I'm weaning off beta blockers that I'm very happy about.
    MeSci, belize44 and lemonworld like this.
  9. sorin

    sorin Senior Member

    Thank you for your reply. Another question: when did you test for CD4 last time and what value you got? Also what is your CD4/CD8 ratio?
    lemonworld likes this.
  10. lemonworld

    lemonworld Senior Member

    I'm not familiar with CD4/CD8, I'm sorry. I'm looking at my blood results now, and can't find something like it. Could it be called something different?
  11. sorin

    sorin Senior Member

    Most probably you did not make this test. They are called CD4, CD8 and are part of a larger test named "lymphocyte immunophenotyping". They indicate an immunity problem. You think your disease started with a mono, but are you sure it was mono and not other virus? Also do you experienced immunity problems (repeated allergies, frequent colds, oral herpeses, candida, skin rashes, shingles, dermatitis, etc)?
  12. PatJ

    PatJ Forum Support Assistant

    Most of these recommendations are non-cannabis related but considering your list of symptoms hopefully you, or another reader, will find something useful here.

    It may be related to chemical imbalances. I used to have wildly varying moods during the day that ranged so much I think they had to be related to chemical imbalances rather than my circumstances. I'm used to watching my thoughts and avoiding negative spirals of thought that lead to bad moods, so I could see that the moods I used to experience weren't related to my thoughts at the time. I could even wake up in a negative mood.

    What helped to stabilize my mood was:
    1) 1mg MethylB12 (HydroxyB12 doesn't have the any effect for me). Enzymatic Therapy, Country Life, and Solgar are good brands of MethylB12.
    2) LDN
    3) Methylfolate - this helped revive my long dead sense of humor.
    4) Lithium orotate
    5) Avoiding too much compression from compression socks. If I get too much compression during the day then take off the compression socks, my mood plummets during the night and is negative for the next 6 hours or so after I wake up. For me, low BP and low mood can coincide so I think the BP drop from removing the too-tight compression stockings causes the BP and mood drop. I seem to be limited to 25-30mmHg compression socks which provide some benefit without influencing my mood. Excess compression also increases my brain fog.

    Now my mood is very consistent and even slightly good most of the time, even thought I'm bedbound much of the day.

    Flax oil has helped to improve my ability to feel emotion. I take 2-3 tablespoons per day. Rosehip powder helps as well. Both are anti-inflammatory.

    Have you tried 1/4 - 1/2 tsp of baking soda in water (or some under your tongue?) It may help to reduce the burn. It also reduces stomach acid so don't take it at a meal time.

    If you are able to try it, start low. Cannabis can lower blood pressure.

    I still have brain fog but used to be so much worse. What has helped:
    1) Betaine HCL with pepsin to improve digestion. Without this I feel very fatigued with increased brain fog if I eat protein. I have found that I need 650mg of Betaine HCL with pepsin for every four grams of protein in a meal, but this varies by individual.
    2) MethylB12 and Methylfolate
    3) Liposomal vitamin C
    4) LDN
    5) Recognizing signs of hypoglycemia and heading them off by eating frequent small meals. I need to eat, then 1h 40m later eat again to avoid hypoglycemia.
    6) Eating frequent small meals to avoid postprandial hypotension (lower BP after eating) due to my low blood pressure.
    7) Liposomal glutathione (which also gives me more energy)

    The only thing that has really helped me with this is pacing. Not using muscles too often without giving them a rest, not pushing to the point that PEM will occur. Standing up too long causes PEM for me as well due to OI.

    Digestion problems covers a wide area. You might be low in stomach acid. One of the first supplements to really help me was Betaine HCL with pepsin to improve digestion of protein (and help in other ways.) At first I had to start with a very low dose, presumably because my stomach lining had thinned due to lack of acid for so many years. After a couple of weeks at a very low dose I was able to increase the dose and eat more protein with meals.

    I get 'coat hanger pain' in my shoulders if I overexert. It's the only time I get pain. Try to see if your joint pain coincides with overexerting.

    My sleep has improved so much by:
    1) Inclining my bed. The head is 6" higher than the foot for a 5 degree slope. My sleep deepened on the first night that I did this. I can also get up without feeling dizzy now. If I lie flat then getting up will result in dizziness and poor balance for a minute or two.
    2) LDN - first it made sleep worse but now it's much better
    3) A soft memory foam mattress. I think my low BP causes me to experience discomfort due to poor circulation at pressure points. I still wake up to change position during the night, but the frequency has reduced with the softer bed.
    4) Organic India Sleep Formula or Nighty Night tea
    5) 1mg Natrol time-release melatonin. Time release and low dose works better for me than non time-release and high dose.
    6) (maybe) L-tyrosine. I've just added this to see if it helps.
    (not good) I tried l-theanine but had nausea, stomach pain, and a sleep hangover that could last for hours. It helps many people though, so you might want to try it.

    Before these supplements I basically went for years with almost no sleep. I would lose consciousness but not dream and stay in a very shallow state of sleep at night. I would feel exactly the same when I woke up as when I went to 'sleep'. Now, with the help of the above supplements, I can wake in the middle of the night and actually feel groggy from the depth of sleep. It's a great feeling. :)

    I had this for years. MethylB12 and Methylfolate helped to almost eliminate it. It took awhile, and I seem to need 1600mcg/day or more for it to be quite effective.

    This thread also lists ways to help reduce the wired-but-tired state.

    This might be related to low stomach acid. Without acid food can sit in your stomach for too long causing a sense of fullness and lack of appetite. Acid is necessary to break down protein and, after a certain amount of time, acts as a signal for your stomach to pass the food on to the next stage of digestion.

    Other nausea aids:
    * Look up the P6 acupressure point
    * Seabands and the ReliefBand utilize this acupressure point to relieve nausea, or you can stimulate the point manually.

    I used to have such temperature regulation problems that I could stand in the sun and overheat, but freeze in the shade. My body temperature fluctuates during the day as well. I think it's related to adrenal dysfunction.

    What helped was:
    1) Liposomal vitamin C
    2) Vitacost brand Adrenal Stress Combat

    Electrolytes can help to keep more liquid in your body, especially if you have the frequent urination that so many of us experience. I use Ultima Replenisher because it contains an excellent mix of electrolytes, some minerals, and no sugar (sweetener with stevia.)

    My life is so much more bearable due to the supplements listed above. Each contributes a little, but together they make quite a difference.
    juniemarie and lemonworld like this.
  13. otherworldly

    otherworldly very severe

    i am very severe. i smoke pot ~4x a week not only 4 the escape but 4 the ability 2 have a creative process & daydream. not that i can do anything w/my creative ideas, can't even write them down, but i'm just present w/them & its fantastic. its the most fun i have being so disabled. w/out pot i am not able 2 do this @ all w/out my brain burning. also, i'm very spiritual & it allows me 2 expand my consciousness. it does not help @ all w/ the burning lactic acid pain, but it allows me 2 shift my focus off of it & travel inward. remember, we r not just our body: we r multidimensional beings having a, in our case, very difficult & limited human experience.
    MeSci, -Jessie-, Bead Dog and 2 others like this.
  14. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    @lemonworld I find it very helpful. Initially I used it for sleep. Not exactly to get to sleep, but to make lying awake more bearable, to keep my nervous system and mind calm. When I no longer suffered insomnia, I stopped it. But a year on, I was feeling quite bad, mostly head-related symptoms, + oxidative stress. So I tried it again. It's really good for me. Unless I'm feeling particularly awful, infrequent these days, I use it only at bedtime. I haven't found anything else that gives me the same degree of relaxation, calm.
    MeSci, -Jessie-, erin and 2 others like this.
  15. Sean

    Sean Senior Member

    I have tried a low THC, high CBD strain, and that was quite useful for damping down a number of symptoms, including improving general mood. But virtually impossible to get, let alone reliably and safely, coz the idiot law.

    High THC strains were not so good for me, especially for blood pressure related symptoms (including anxiety), though they did settle down within 30-40 mins, and it was okay after that. Still, I avoid them, and don't recommend them.

    I would really like to be able to try a zero THC, high CBD strain/preparation.

    Hint, hint, medicos and lawmakers. I don't want the intoxicating 'high', I want the non-intoxicating medicinal properties. Is that so hard to understand and find some sympathy for?
  16. Bead Dog

    Bead Dog

    I have tried a variety of cannabis strains with varied results. The strains that work best for my pain Are the low thc/high CBD ratios. They don't completely eliminate pain, but do take the edge off of it. As someone else mentioned, these strains can be difficult to find. I also find that sativa or sativa dominant hybrid strains work best for me. Indica puts me right to sleep, so only use an indica when I want that effect. I do feel that cannabis should be made available to all who suffer from chronic pain conditions. Good luck if you decided to try it out.
    Sean and MeSci like this.
  17. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

    Ohh yes!!

    And now, in Japan, I have experience with being completely unable to use it. Well, not completely, CBD oil is legal here.

    Many of the modern strains have been breed to be low in CBD, so that the experience from THC is accentuated.

    This is a mistake, it can result in moderate to severe anxiety.

    Landrace strains typically don't suffer this problem and contain sufficient amounts of CBD which balance the effects of THC.

    A simple solution is to obtain some CBD oil, landrace strains aren't always easy to come by.

    Cannabis provides a type of pain relief that is entirely different than opiates. Less effective, but far more conducive for daily use. ;)
    MeSci, -Jessie- and lemonworld like this.
  18. overtheedge

    overtheedge Senior Member

    I used it for a time and it certainly made life more bearable, felt like i had more energy during that time but it never improved my overall cfs in any lasting way. I would still be taking it if I knew for a fact that I wouldn't get better or didn't have access to anything that might help my condition but I stopped it because it would interfere with my sensitivity to medicines that I test on myself, it's very hard to tell if something is making you feel better when on a psychoactive drug

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