Helpful hints for living with the symptoms of mast cell disorders

“Proper self-care is not a luxury. It is as necessary to my disease management as my meds.”

Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders:
Overall Stability
Eating at home and outside of the home
Being Prepared

 I keep a folder with me that stays in the car of all my doctors contact info, TMS emergency protocol, MY specifics for emergencies, allergies, med info, I.C.E. phone contacts, brief medical history, list of conditions and brief explanation there of symptoms, ANA warning, most recent test results and letter from my physician stating that I require a service dog. There is another copy stapled and folded in my dog’s emergency backpack, as well as one in our kitchen cupboard. It’s a LIFESAVER…LITERALLY!


Be an informed, self- advocate. Nobody knows your body and what you go through better than you do. I’ve had to stand up for myself when I could barely stand, and educate medical and hospital staff and insurance companies way too many times. You have to be able to intelligently represent yourself and if you are too ill, try to have family members or trusted close friend that you can coach ahead of time to advocate for and with you. 

Medical Alert Jewelry and Devices

I have a USB bracelet and an emergency folder.


I wear a Medic Alert bracelet, and the first word on it is Anaphylaxis. I also keep a copy of my emergency folder on my refrigerator.


I wear a life alert button with a fall detection system at all times in the house.


I wear a life alert system with a GPS built into it, so it follows me wherever I go.

Bone Pain

I take a warm Epsom salt bath (2 cups Epsom salts per tub of water) for bone pain.


I use meditation for stress and when exhaustion sets in… rest, rest, rest.


Moving gently, with stretching or qi gong tapes, helps me to deal with bone and muscle pain.


Deep therapeutic massage gives me tremendous relief from musculoskeletal pain, especially severe back pain.

Fatigue

I find fatigue easier to treat when I first feel it come on: a little nap of 30 minutes to an hour can make a huge difference in the rest of the day.


Any kind of gentle exercise-even gently stretching-helps my fatigue.


I relax daily. I pet my kitty.


I find that if I sleep 8-9 hours per night and take a mid-afternoon nap, I feel better overall.


If I wake up feeling sick all over, sometimes it is just better to give in and have a couch day.


I do take naps even when family members prefer that I do not, but sometimes I can’t help it. When relaxing I turn TV down & put my ear buds on & listen to my many play lists from my phone or my computer.

Exercise

I exercise almost every day which helps with my dysautonomia symptoms.
I drink a lot of fluids and salt liberally (when exercising).
I avoid all triggers. I always have meds with me.


Moving my body but not overdoing exercise helps me a lot.


I subscribe to the histamine bucket theory. I do usually run several miles a week. Fresh air, sunlight (as long as it’s not too much), and sweating while moving really help me empty the bucket. (Note please that every patient is different. Some patients experience an increase in symptoms the minute they get warm enough to sweat. Pay attention to your symptoms and triggers and treat them accordingly!)


I started with small short walks to the end of the driveway and back. Now I am up to several miles a day. It helps with stress.


I choose foods that have higher levels of luteolin/quercetin. Olive leaf tea is a life saver, and I have it nearly daily (it has eliminated hives, and allowed me to change altitude with only sickness for a day or two). I have to pick my own leaves and I grow my own herbs.


I grow my own herbs – I react to all purchased herbs and spice, so far. This made a HUGE difference, although it may not be as helpful for those with salicylate issues. But It helped because when my diet fell to nearly nothing (went up and down a bit at first), the herbs would add in more nutrients AND enough variety that it helped to make my diet more flavorful.

Cleaning

I wear a 😷 mask a lot while cleaning because of a possible trigger, and I always premedicate before I leave to run errands for work or meet a client.
I clean with vinegar, baking soda and peroxide.


I make my own cleaners, own beauty supplies like face wash, deodorant, lotion, etc. Here are some sources for recipes for them:


http://theindianspot.com/10-best-diy-beauty-products-using-aloe-vera/

http://diyjoy.com/best-homemade-cleaners-recipes


One thing that has helped me is removing chemicals in my life.


www.norwex.com is a site that has chemical free cleaning alternatives.

Massage Therapy

Some people get tremendous pain relief from massages, others do not tolerate them. If you would like to try one, schedule a short one and pre-medicate with your H1 and H2 blockers. Let the massage therapist know that you cannot have scented candles or sheets, and that the room temperature must be carefully controlled to your needs. Plan to rest afterwards and see how you do. Make sure the massage therapist only uses plain mineral oil for the massage.

Integrative Medicine

Meditation helps a lot! I started with tapes, and also do some online group meditation.


I find this site very helpful for meditation: http://www.springforestqigong.com/index.php/master-chunyi-lin



I meditate daily and practice visualization.


I get a lot of relief from Reiki and integrative manual therapy, probably because the touch is minimal. The energy is what is soothing, and these therapies do not aggravate my skin lesions.


Keep mentally busy. Use guided meditation and inspirational videos.

Protocols

Keep a copy of your emergency protocol in your purse or on your person (a flash drive is a great idea!), in a zip lock bag on the refrigerator, and in your car(s) at all times.

Diarrhea

I never leave home without anti-diarrheal meds, wipes, a bag with extra underwear, a few adult diapers, and a change of clothes, and trash bags for disposal.


Get over yourself and try adult diapers for the horrific days if you have to leave the house to travel to a doctor’s appointment or for any other mandatory reason. They are actually very comfortable, and spare you from a very embarrassing accident.


I use Balmex or Butt Paste to soothe tissue irritated by diarrhea. Both work great.


My doctor put me on an old cholesterol medicine, colestipol, to help with diarrhea, and it has made a world of difference. Also, he recommended bismuth containing preparations to help with diarrhea, and that has also helped with the bloating and gas.


Using the Specific Carbohydrate diet has helped with all of my gi symptoms. 


For a really bad flare with diarrhea and nausea, I revert to eating just baby rice cereal (brown rice is better for me, but white rice is also an option) and drinking decaf tea and pedialyte. I do this until I see real signs of recovery in terms of pain, number of diarrheic stools and amount of nausea.


My safety strategy is to keep pedialyte or Gatorade in the house at all times.


I keep my emergency meds and a blanket in a tote by the toilet (so they are available during prolonged bouts of diarrhea and vomiting).

Nausea

I find that drinking tea helps my nausea.


When nausea gets to the pre-vomiting stage, sucking on ice-chips helps me to feel better and get control.

Zofran (ondansetron) taken twice a day has helped my nausea a lot.


My nausea has improved since I switched to pants with elastic waists, so they can expand and do not put pressure on my stomach.


I keep my emergency meds and a blanket in a tote by the toilet (so they are available during prolonged bouts of diarrhea and vomiting).


Watch the temperature of things that you eat and drink. Hot foods and beverages can precipitate nausea and vomiting in me, and I can stop it if I am able to get ice chips down. Other masto patients report the same thing happens to them with cold beverages and foods.

Bloating

When I start getting severe episodes of bloating, so that I look nine months pregnant even though I am a guy, I cut out dairy and fats for a few days, and it seems to help.


Taking an extra dose of gastrocrom and H1 and H2 blockers seems to help with sudden bloating.

Skin Lesions and Itching

I find that my oral cromolyn sodium applied to the skin can help with severe itching.


For flushing I use cool wash clothes and cool showers and baths.


Keeping skin hydrated helps prevent the real acute itching. I use olive oil or mineral oil.


Oatmeal baths help when my itching gets severe.


Aspirin therapy has helped with my flushing the most. First my doctor ordered a 24 hour urine collection for prostaglandin D2 and 11 beta prostaglandin F2 alpha, which were both elevated. Because aspirin can cause anaphylaxis in up to one third of patients with mast cell disorders, aspirin therapy must be started in a doctor’s office or hospital setting, and you have to stay for hours after the dose each time to make sure that you are not reacting. Still, it was worth it, because my flushing has been significantly reduced.

Stress Management

Stress and big emotions (good or bad) are among my worst triggers, and not entirely possible to avoid. I use a variety of stress management tools to help keep things better balanced. Deep breathing, guided meditation, prayer, journaling, painting, music, yoga and tai chi are all things that I’ve found very helpful. On that note: proper self-care is not a luxury. It is as necessary to my disease management as my meds.


I quilt or make jewelry.


I love snuggling with my dogs and taking them outside to play.


I love any kind of crafts. I lose myself in the joy of creating something.


I love to go kayaking. The rhythm of it soothes me.


Music relaxes me. I pretty much have it on in the background all day.


I do my old pregnancy La Maze breathing exercises.


After my dog of 14 years died- I had absolutely no reason to get up on bad days- so my husband bought me a puppy to love. She gets me up even on days I feel like death. I walk even it’s just a few minutes- even when I feel like death- because she depends on me. It is hard, but even on bad days it’s better to get up and move even a little. It’s good for blood flow and your lungs- all the valves in your legs- it sucks for sure- but it’s still good for me. On the days I’m puking and pooping up a storm- I have help with Bella and I resort to a funny movie while in bed, or a game of solitaire, or I “farm” and talk to the folks in my “neighborhood” online. I think staying connected to humanity is vital and keeps me from the depression that sits at my door.


I sew when my pain is bearable. I have a lot of games on my iPad for the days I can’t get up (my husband bought this for me to keep my mind busy when my body can’t be).


For my son it is knowing his limits and enforcing them no matter what others say, and music, music, music. It is what centers and calms him, I guess his version of meditating.

Headaches

One of my meds is hydroxyzine, and that always seems to help my headaches. I am also on Topamax for headaches, which helps a lot. A cold cloth to the head and back of the neck also soothes me.


A gentle head and neck massage can help with headaches.

Spirituality and Faith

I meditate everyday about sundown. I light a candle and pray for family and friends on my screened in porch.


I meditate every day without fail.


I start the day meditating, so that I am in a calm mood to meet the challenges I will face.


Remembering that the Lord is in control and that He can do anything. Trusting Him has been the most helpful thing in our journey. It is important to remember that every person reacts differently to different things and that even the tiniest change can make a difference.


I practice acceptance every day. Every day I am at different ability level – and I have to accept where I am that day, or hour. Getting upset only makes the symptoms worse.


I know that anaphylaxis is a constant risk for me. I choose joy every day, no matter what.


I pray and say a rosary whenever possible. It brings me peace and strengthens me.


The one thing that I love about the TMS community is that whenever anyone is sick or in trouble, you can go online to the TMS Facebook page and ask for prayers, and immediately, no matter what time of day it is, all these prayer warriors will start responding with prayers from all over the world. It is an amazing network of loving people, and it has saved me on many very bad days.

Brain Fog

Oh, and to cope mentally and emotionally – music, and learning new languages. Not only does the latter make me feel more connected to other people, but it has helped me track when my brain fog is worse, because suddenly I can’t remember as well.


Learning 3 vocabulary words in a new language has helped the progression of my brain fog tremendously.


Exercise has helped my brain fog, and so has eating more fish.

Heat and Cold as Triggers

I have to avoid heat and humidity at all costs. I will suffer not only on the hot day, but for days afterwards.


I have developed an inability to eat hot soup due to my heat sensitivity. I have to eat the soup warm, and sip ice water in between eat spoonful to prevent projectile vomiting.


I have to keep the A/C on all summer, and make sure that the car is cool before I get in it on hot days. For those that have heat intolerance, the remote starter in cars is great in the summer- no more to entering a hot car!


I wear a cooling neckband all summer when out in the heat and humidity.


In my case I sometimes get warm regardless of outside temperature. I avoid hot showers and warm temperatures whenever possible. In summer months I carry a small water bottle to squirt water on face/neck/arms to help cool down (if the humidity isn’t too bad, it acts as artificial perspiration to cool body, even if water isn’t cold or you don’t have a fan). It is amazing how much this works.
• I also use an old fashioned hand fan that folds small to carry in my purse.
• I dress in layers during cold months so that I can remove clothing before getting overheated.
• Very important – I wear natural fabrics (cotton) that ‘breathe’ (leather shoes) so they do not trap air in and overheat. This especially true for nightwear.
• If you live in very cold climate, remove hat or gloves when starting to overheat as that can help cool down quickly (for myself, once I start overheating it’s difficult to cool down, so I do everything to stop it at first sign).
• Use cold washcloths at the first sign of overheating.
• Putting a cold can of soda on neck or pulse points can help cool down to avoid developing hives from overheating.
• I can’t wear my hair on my neck in summer if I’m outside. It has to be shorter so it doesn’t reach neck or longer so I can pull it off my neck. (This is important for parents of children with skin lesions as the child might not realize or be able to articulate what a difference this can make.) *Cooling vests, neckbands, or towels available are available for sale on-line.


*Someone recently mentioned putting a sheet in the freezer and then taking it out with you when getting into a car that’s been sitting in the sun.

*Someone also once mentioned wetting a sheet and hanging in front of a fan in an apartment that didn’t have air conditioning.

*No hot showers. Lukewarm or cool or sponge baths only. I schedule my showers so that I do not have to dress immediately afterwards; I need to cool down before dressing.

*I can’t use hair dryer immediately after I shower; I have to cool down.

*If I do stay in hot water too long and start to hive and itch, if I can avoid scratching for 20 minutes, I find that the worst part goes away.


I recommend that the 1st layer of clothes to be light weight silk or cotton with poly over. Sometimes direct cotton creates too much friction for me, but can’t go straight poly, as it doesn’t hold body heat so I will get cold. Silk holds body heat then poly on top is light weight.


Silk long underwear also helps avoid aggravating my skin lesions. Anyone looking to buy it – the time when ski shops have it on sale is at end of winter season. There are online sites that just sell winter silk long underwear, too. You can google it.

Depression and Anxiety

I live in a place with lots of natural light which helps with my mood.


I take daily walks, do yoga and get Reiki for depression.


Meditate daily and do deep breathing often if anxious. Breathe in through the nose and longer exhale through the mouth.


Hydroxyzine as an H1 blocker helps with my anxiety.


A good psychologist helps me deal with the chronic symptoms of this disease, and helps me to stay positive.

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