Below are suggestions for coping listed by symptom. Information compiled from input from many group members. Feedback and more suggestions are always welcome.
As with all things on this FB page, these are tips collected from various sources and are NOT medical advice and is not intended as a substitute for medical care. We are not responsible or liable for actions taken as a result of the information presented anywhere in this group. Please consult a clinician before embarking on any medical treatment, therapy, or program. ~Colleen
TOP TIPS THAT HELP ALL SYMPTOMS:
PENE (PEM) (Post exertional neuroimmune exhaustion from ICC)
I recommend anyone dealing with this symptom watch this video. Understanding the broken oxygen exchange system and learning to live within the limitations is one of the most significant ways to improve quality of life:https://www.youtube.com/watch?v=FXN6f53ba6k&app=desktop Mark VanNess - May 2016
BREATHING: This is an excellent article that talks about the oxygen exchange issues and it suggests the following tip for improving oxygen levels: 1) Inhale through your nose for 4 seconds 2) Hold your breath for 7 seconds 3) Exhale through tightly pursed lips for 8 seconds, creating "back pressure" (you should be able to hear the air being forced out of your mouth as you do this.)
Medical masks to reduce allergens and give body a break from reactions from chemicals, etc.
HEPA vacuum (this really helps reduce the allergens).
FLUIDS: Dehydration issues are a real problem for most of us, so it is important to drink filtered watered (no chlorine) as much as possible. I replenish every morning with an electrolyte solution. 2 liters of water per day is a recommendation I've seen from Dr. Klimas.
Unfortunately some symptoms are caused by medication side effects. This is an excellent resource listing a lot of commonly used medications. I think all doctors should provide an informed consent form when prescribing a medication. http://www.dhs.wisconsin.gov/forms1/F2/MedBrandName.htm
DIET: Everyone's system seems to have a wide variety of sensitivities and no two people are the same, so I have found a food/reaction diary very helpful. It is a lot of work, but it is the best way I have found to pin down triggers.
I also recommend the book: RX Prescription for Cooking and Dietary Wellness by Phyllis and James Balch. I bought this many years ago and have found it to be a good basic guide to help me tailor my diet toward helping resolve symptoms. Mine is from 1992 so there may be new information or newer versions, but I think the basic overall information is still good and it is presented in an easy to understand way.
Melatonin – start with low dose and work up. Sublingual acts more quickly and timed release works better for me to stay asleep longer.
Benadryl (liquid for minimal dose)
Kava Kava tea
zinc monomethionine - suggested by Delia Hogan in another support group - this is what she said: "emphasize the form of the zinc: monomethionine because as I said I was taking zinc in my expensive special multivitamins the entire time my sleep was worsening, up until I did a one by one trial. I didn't even take the zinc for my sleep! It was a surprise effect!"
Chamomile - drink or in bath (I'm allergic to this - similar to hayfever - but a lot of people find it helpful)
Lavender or Chamomile aromatherapy
I can help u sleep book/Cd by Paul McKenna (Have not listened to but someone else recommended)
Get 30 minutes of sunlight between the hours of 6 a.m. & 8:30 a.m. To help reset the body clock.
Use a 10,000 lumen light for 30 minutes every morning
100 mg l-theanine to slow brainactivity/monkey mind
One glass of tart cherry juice (particularly Montmorency cherries) may improve sleep thanks to high levels of melatonin in it. (I am allergic to cherries so haven't tried this one)
MUSCLE PROBLEMS (weakness, pain, twitching, or muscle burning)
B12 sublingual every morning
Pulling on arms/legs
TENS unit (see separate File for details)
Epsom Salt Spray: (Taken from a support group post: jam jar and put 1:1 salts and hot water in, and shake till dissolved. Stick it in a spray bottle, and you can apply it to the soles of your feet at bedtime. I put socks over as it can leave a residue on your sheets. It's not permanent, it's just like salt, but it can be a bit crusty and icky looking!)
B12 in the morning. I find sublingual Methylcobalamin works the best.
Melatonin at night. Although I'm on a much higher dose now, it seems like most people do pretty well with 3 mg sublingual at night. It is important to know that melatonin can only be gotten via a prescription in the U.K. It is widely available in the vitamin section in the U.S.
Ginseng - I have not had much success with this helping me, but it has helped others. I know there are a couple different kinds of ginseng so one might work better than another. Unfortunately, as with many of these suggestions, trial and error is the only way to know for each person what helps.
Get blood work to check electrolyte levels
POTASSIUM levels in higher range
MAGNESIUM levels in higher range (not all magnesium is the same - some trial and error may be needed - info on magnesium in separate file)
Check Iron levels
Use non-latex toothbrush
gentle toothpaste (Baking soda based works for me)
SORE THROAT: Note: Avoid antibiotics when a sore throat is due to infection with a virus. Using antibiotics to treat viral infections helps strengthen bacteria to become resistant to antibiotics. AVOID TRIGGERS
Foods: Acidic foods as well as food sensitivities can lead to sore throat.
Environment: Chemicals like air fresheners, cleaning products can cause sore throats.
Mold in the air can cause lots of problems including sore throat
Avoid Formaldehyde and other chemicals outgassing from furniture.
TIPS TO RELIEVE SORE THROAT PAIN
Zinc lozenges can help if problem is viral.
Wearing medical mask can help if problem is airborn.
HEPA filter can help keep allergens down.
Acid reflux can cause sore throats so avoiding eating before bed and/or slightly elevating bed to prevent reflux from getting into throat.
Nasal drip (sometimes nasal sprays) can cause sore throats.
Gargling with salt water can help relieve symptoms.
Gargling with ginger tea
CRIMSON CRESCENT - many years ago it was thought that people who have a red crescent shape in the back of the mouth was a diagnostic clue for CFS. When I have lots of sore throats those are more visible.
Oregano (Origanum vulgare) Essential Oil (Thanks Francesca Owens for this information). Note: be sure and purchase essential oil that is processed to be ingested. · Mix together 2-3 drops Oregano oil and 1 ounce Carrier oil, then soak a Q-tip with the mixture and dab it directly on the inflamed area. (If you find it is too hot, add some more Carrier oil.) · You may gargle with 2-3 drops of Oregano oil and 1 tsp Salt in some hot water as well. It can take up to an hour for soreness to be gone.
SIBO - this site explains what Small Intestine Bacteria Overgrowth is suspected to be and some diet suggestions to reduce problems. https://sibocenter.com/
Peppermint aromatherapy (I put a tiny bit on my temples)
Peppermint candies that have real peppermint oil
Add loose ginger as in cheap cooking supplies to ginger ale (like Vernor's or Canada Dry) reported to work for boat and car sickness
I think we get sweats for a variety of reasons: Menopause, meat sweats (thermogenic effect), fever, toxin flushing, infections, etc.
Cotton clothing (NO polyester)
Plenty of fluids with electrolytes – very good are: plain pedialyte or watered down lemon-lime Gatorade. I have seen some posts for drinking lemon water with Himalayan salt as helpful. (I can't do citrus so haven't tried this one.)
Ride the wave
Peppermint oil to temples (dilute with base oil like almond if too sensitive)
Research into thermogenic effect may give some insights into how to reduce the sweats. Some foods like meat, alcohol, spicy food, ginger cause this heating up effect so adjusting diet may be helpful.
IRRITABLE BLADDER / FREQUENT UTI: For those in the U.S. - Pharmacies now carry over the counter UTI test kits as well as phenazopyridine Hydrochloride. I use these to help avoid a doctor visit. The following helps prevent and/or cope:
Cranberry pills daily (high dose - 4200 mg.)
Grapefruit Seed Extract
avoid sodas or too much sugar
plenty of water always - extreme amounts of water during flare
When inflamed - wiping vulva area with watered-down tea tree oil Suggested use - water in a small jar with few drops oil - shake well and put small amount on tp and wipe area carefully - not meant to go into urethra.
Phenazopyridine Hydrochloride - 97.5 mgUrinary Analgesic (available without prescription in the U.S.)
Various antibiotics have been recommended by others: Trimethoprim, Nitrofuratonin, pivmecilllinam hydrochloride 200mg, Cefelexin - (Many recommend avoiding cipro, and I concur!)
Muscle relaxant prescription (use as seldom as possible)
Epsom Salt baths
Yoga movements for supple spine - sitting postures only done slower than normal.
TENS unit using acupuncture meridian knowledge. (See TENS file for details.)
Tapping - there are a lot of videos about tapping and the idea behind it. For me the physical activity helps me relax and it goes along with the lymph drainage self massage work. (see video link under brain racing.)
Potassium rich foods like bananas
Vit E. (good for breast tenderness - per a Dr. recommendation)
Magnesium spray - 1/2 cup magnesium chloride flakes (not same as epsom salts) Boil 1/2 cup distilled water Pour water over magnesium flakes in a glass bowl or measuring cup Stir - cool completely - put into spray bottle.
BACK AND NECK PAIN:
Good page showing resting positions to realign the back and neck. Not actually "exercises".
Lymph gland massage - there are certified specialists – I find regular massage releases more toxins than I can handle, but lymph massage helps me a lot. (Lymph massage requires a very light touch - so it is much easier to tolerate for those of us who experience pain when touched.
Yoga movement for lymph glands: Grasp hands in front of chest, move elbows up and down in a see-saw motion while breathing forcefully in and out.
Foot massage – I have found gentle foot massage helps lymph glands in feet. (It sometimes feels like I am walking on marbles because of swollen lymph glands.)
Geranium oil mixed with almond oil lightly massaged into tender lymphs. (I was given this tip by a lymph massage practitioner - not sure it helps, but it feels good and I like the smell.)
Drinking lots of fluid.
If bed ridden, remember movement is how lymphs normally circulate so raising and lowering legs and arms as much possible helps keep lymphs moving.
Use one of the large exercise ball to sit on and gently bounce up and down. (I do this while holding on to something! It's NOT for the exercise... just to get the lymph system in the legs to get some movement.)
remind myself I’ve had this feeling before and it will pass.
Bio-feedback – Wild Divine game. I understand this is often called neuro feedback and there are places that offer it in various areas. I have had professional biofeedback sessions. I won't say this is a miracle cure, but it is one more tool in my toolbox to help reduce some of the symptoms that come from the biological processes that are malfunctioning.
Xanax can cause rebound anxiety. Klonopin/ clonazepam which is similar has a longer half life. The anxiety happens as the drug is wearing out of your system. Xanax's half life is about 4 hours; clonazepam's half life is about 8 hours.
SKIN RASHES/HIVES (allergies)
Avoid sensitive foods
Unscented bar shampoo (Liggett’s)
Pure body bar soap (Ivory)
Non irritating face wash (Hydrophilic ointment aka Aquaphilic ointment)
Minimal unscented laundry detergent with a vinegar rinse
No perfume creams or lotions. I use plain Vaseline or pure Almond Oil
Some of us find that zyrtec plus an h2 blocker like tagamet helps control hives. Taken daily without skipping days seems to be more affective
Note: Hives are not always an allergic reaction - it can be due to a dysfunctional immune system "stuck" in hive mode.
Iron supplement as needed
Iron rich foods
Cook with Iron skillet
Add plain gelatine to diet. (Favorite: Pure apple juice gelatine.)
Remember pain relievers and many brain/memory herbs as well as garlic can thin blood.
Stay hydrated (headaches can be caused by dehydration)
NO Monosodium Glutamate (MSG)
No Nutrasweet or any kind of fake sugar
Can be caused by caffeine withdrawal or large fluctuations in Vit C levels.
Fillers in some medications (I experienced headaches when manufacturer of cimetidine changed.)
Xanax withdrawal (I am sure other medication withdrawals cause headaches.)
Ice pack to back of neck
Small amount of Peppermint essential oil to temples (emphasis on small amount)
If waking up with headache try sleeping with head slightly elevated.
The following was from a post on a support group (posted with permission)
for those taking MitoQ or Niagen (NAD). Do NOT take them together. The combo is known to cause headaches.
Non Chemical Headache Remedies.
There's an Alexander Technique tip that sometimes helps me. Stand or sit tall,images the top of your head is being pulled up by a thread and align your jaw so that it is parallel to the ground, no tilting back or forward. I think the theory is that this improves blood flow to and from the brain.
Another, this one origins from acupuncture I think. Take thumb and forefinger of each hand and pinch firmly, but not too hard, in small steps along the flesh behind your eyebrows, starting at your nose and moving slowly towards your temples. When you get to the temples, massage the temples in a circular motion, sweeping up near the hairline and down on the outer edge of your eye socket. This one works for stress headaches too. The affects may not last long, but then you just repeat as long as you need to.
MEDITATION/YOGA - Because of my muscle issues, I don't do "regular" Yoga. But I have found the breathing practices as well as gentle stretching and posture alignment to be very helpful. This is a good "checking in" practice that only takes a few minutes. For many years I have done a Kundalini Yoga warm-up that is done sitting on the floor and laying down resting between movements. I always do the movements slower than the instructor (DVD). By doing this in a gentle way with rests between movements this works very well to prevent payback.
TAPPING - I mention this above, and it is a very "odd" thing to try. But I have found benefits, including helping my lymph glands function better, reducing stress, loosening the muscles in my neck. Here's a more in depth video for anyone wanting to learn more. (He claims some miraculous cures, and it would be wonderful if that happens for everyone trying it, but I feel that anything that helps me get through the day in a better way is worth trying.)
As with everything on this page, this is not to be considered medical advice
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