• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    MRI: White Matter Lesions?!

    Have had them show on MRI’s. A decent sized one in the periventricular region. My MRI report stated to follow up for suspicion of MS. The neurologist I was seeing mentioned getting spinal tap, but I declined it. just watching and waiting at this time.
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    How do I know I'm not dying?

    Have you had your b12 and folate levels tested?
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    Blood labs ferritin

    You might want to research macrocytic anemia and b12/folate deficiency.
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    Where can i go for a month to rest and relax?

    @hmnr asg Sorry to hear about your TN. Don’t be too bummed about missing out at Mt. Madonna at this time, because their founder and spiritual leader Baba Hari Das passed away very recently. It probably would have been very busy and lots of people there for memorial. I hope you get some relief...
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    The FDA's loophole to stop you purchasing L-Glutamine and other Supps. Take Action!

    Thanks for posting this link. I feel that it is extremely important for anyone who uses OTC supplements of any kind to take action on these type of issues. My fear is that the government is getting way too regulatory regarding alternative health options and at the same time, limiting our access...
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    Where can i go for a month to rest and relax?

    @hmnr asg Look forward to hearing about your experiences.
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    Where can i go for a month to rest and relax?

    @hmnr asg Living in San Jose would make you real close to Mount Madonna Center in Watsonville. You can do private retreats there. Take a look at the website.
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    anxiety, internet addiction and CFS

    I did my 200 hour teacher training in Integrative Yoga Therapy, my 500 hour in Classical Ashtanga. Lived at a yoga center for a short time. I’ve taught at neighborhood recreation centers, fitness centers,hospitals, yoga studios, senior centers and privately. I loved teaching the senior...
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    anxiety, internet addiction and CFS

    i’m finding this post interesting to read as there seem to be many of us who were so actively involved with yoga and meditation practices before becoming ill. For me, I see the time spent on internet activities as a way to cope with being less physically and socially active. Pre illness I had...
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    Anyone else have trouble getting blood drawn (won't flow)?

    I have this problem when getting blood drawn too. It’s also hard to find my veins and my veins tend to roll away from the needle. I try to super hydrate before getting blood drawn. I’ve had techs cause me lots of pain and even had one recently who was squeezing my arm while the needle was in...
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    Is anyone else terrified of catching the flu?

    I’ve been with the flu since the 31st. This is a serious virus. Today is the first I’ve been able to be up in the house. I actually ate some soup at the kitchen table. I am pre diabetic and it totally jacked up my fasting glucose levels. You might want to stock up on some essentials, bottled...
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    Is there any remedies for feet tingling / nerves twitching ?

    B1 and B12 may help with this. Be cautious if you are offered Gabapentin. It can have nasty side effects and is very difficult to discontinue after you have been taking it for a longer duration. I use medical cannabis and I also use small dose of kratom (from a vetted vendor). The kratom works...
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    Gabapentin

    I took Gabapentin for 3 years for peripheral neuropathy. The longer I took it, the less it seemed to help. The side effects were too much for me. It felt like I had a chemical lobotomy. I tapered myself off of it this summer. I did have withdrawal from the taper. I still have pain from the...
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    twitching, impaired digestion, and other symptoms

    Angular chelitis is a symptom of b12/folate deficiency, so is twitching. Might want to revisit the b12 vitamin supplementation.
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    What type of doctor has helped you the most? (MD, neuro, IM, FM, chiro, naturopath etc)

    The best doctor that I have dealt with was cash only, specializing in osteopathic/homeopathic/acupuncture. After being seen regularly for three months ( without much improvement), he told me he could not really help me. Recommended I get an MRI. I appreciated his honesty.
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    Most effective remedies for Chronic frontal sinus issues

    I've been using a nasal spray called Sinu Orega. Really helping to clear my sinus.
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    Anyone develop a meat (or other food) aversion after getting CFS/ME?

    I've never really liked eating meat, even when I was a child it just grossed me out. If left to my own devices, I would eat high carb, nuts, dairy, vegetables. I do however eat some chicken and turkey for protein. SInce becoming ill, my digestion is way off and prediabetes and lactose...
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    PEM "neuro" flare, others ever experience similar?

    Have you had your b12 and B1 levels tested? Many of your symptoms sound like possible deficiency.
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    Medical cannabis for making existence more bearable?

    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...
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    Mysterious health "event"

    Thyroid? B vitamin deficiencies? Lupus? Just a few ideas.
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    Extreme calf Soreness and Pain Emg/Ncs show severe damage elevated ck and alsolase- not cfs?!

    Sorry you are feeling so unwell. In reading your post, I noticed that you stated digestive problem of diarrhea. That, along with some of the other outcomes from your nerve conduction and muscle testing could really flag problems with b12. Doctors are so quick to dismiss or play down the symptoms...
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    Agony in legs when I lie down...

    Have you been checked by a neurologist? Really sounds like peripheral neuropathy symptom. The pain from pn is worse at night.
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    Questions about pot for medical benefits and buying from dispensary

    Thanks for letting us know how this worked out for you. 62% is a ton of THC!!! No wonder you were blotto. I really like the edible dose mints as well. For me it seems they kick in subtle and the pain relief lasts longer than via inhalation. Glad you had the chance to experience and experiment...
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    Questions about pot for medical benefits and buying from dispensary

    @perchance dreamer you could probably keep it in the freezer. Definitely keep it out of strong light and best in a sealed airtight container. Might lose some potency, but would still most likely be ok. If you want to learn more about how cannabis works, there is an excellent website...
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    Questions about pot for medical benefits and buying from dispensary

    Maybe try a strain that is 1:1 ratio of THC:CBD. I prefer indica strains for sleep and sativas for daytime use. You may also want to try CBD only for pain. I've been experimenting with medical marijuana for about two years, and it has taken me time to find strains that work for me. The strains...
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    Terrible time during summer

    As others stated above, try to keep cool, stay indoors, eat cooling foods. I live in the hottest region in the Southwest...let me tell you how I absolutely dread the heat. This time of the year I even hate opening the door to let the dogs in and out. I'm hoping to get to a cooler climate for a...
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    Why do I tell the truth?

    This seems to be quite a common occurrence when doctors either can't / won't try to figure out what might be causing illness. Here's what I have done when treated less than respectfully by these jerks. First I fire their sorry ass, then I hit every online venue; Google, med sites that give the...
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    Extremely upsetting SPECT scan results: brain lesions! What now??

    I have these types of lesions too. Also have one larger lesion in the periventricular area (with Dawson's fingers.) In my case, neurologist have not said what the cause is and have not ruled anything in or out. The MRI's of my spine don't show any lesions. The MRI was done one year ago. I'm...
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    Medical marijuana & pots

    I've legally been experimenting with medical marijuana this past year. I'm finding that I do best with 1:1 ratio of CBD:THC. I also did well on a high CBD to low THC ratio. The high THC no CBD doesn't work for me, in fact it makes my neuro symptoms worse. Straight CBD without THC does nothing...
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    Every single time I eat in the morning symptoms get worse

    I wonder if you may have type of "silent" gastritis. The type that is more autoimmune. I read that it does not always cause typical gastritis problems, especially if it just began. Maybe get an endoscope to see if anything is going on in the stomach?