My ME/CFS Symptoms

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I thought that today I would share with you a list of my symptoms. In doing so I hope you can understand ME/CFS illness a little better. Some of this may be T.M.I. but it is my reality.

In my 11 years of having ME/CFS I have had many, many symptoms. They vary widely and are more severe and diverse the sicker I am. For those who may wonder what it looks like to have this illness here is a list of what I personally have experienced. Some of these come and go. Some are always there but vary a lot in degree of severity. I almost always feel better in the summer and worse in the winter. Not all of these are necessarily caused by ME/CFS but they are all certainly impacted, or made worse, by it.

Symptoms I have Always:
Extreme fatigue/no energy/no stamina
Thyroid issues – hypothyroidism, Hashimoto’s disease, thyroiditis
Weakness
Can’t exercise or do anything physically or very mentally exerting or will be wiped out for days (Post-exertional Malaise)
Have trouble thinking/brain fog/can’t focus or concentrate, can’t remember things
Cold – get cold very easily – numbness then burning pain in feet and fingers – Raynauds (I got frostbite from sherbet in August once.)
Sleep is messed up – can’t fall asleep or fall asleep but keep waking up, or both
Dry Skin
Don’t feel like eating/not hungry especially in the morning, full quickly
When I eat usually crash afterwards, like my body has to shut down to digest
Abdominal bloating
Stiffness in joints in the morning or after sitting for a while and pain/aching
No sex drive
Infrequent periods
Constipation
Lose a lot of hair and thin eyebrows (most likely thyroid related)
Can’t wake up or get up in the morning
Low blood pressure
Low body temperature
Allergies – increased food allergies (and sensitivities) and seasonal allergies
Crazy dreams
Dizziness (especially when standing up from lying/sitting/bending over) (orthostatic hypertension)
Ringing in ears
Slow healing of cuts and bruises
Shallow breathing and then sigh/breathe deep often, shortness of breath
Easily overwhelmed by sound or flashing lights
Vitamin and mineral deficiencies – D, B12, Iodine
Ridges in nails
Vision problems – dry eyes, problems seeing at dusk
Cherry angiomas – developing more
Always thirsty despite drinking tons of water (and always needing to pee as a result)
Back muscle knots/pain (gets aggravated for several weeks then subsides)
Jaw pain, stiffness, teeth clenching and grinding in sleep (gets aggravated for several weeks then subsides)
Sore throat (comes and goes)
Headaches (come and go)

Symptoms the come and go/When I am feeling less well:
Joint pain – jumps around; ankles, knees, hips, wrists, hands
Muscle pain and/or burning sensation
Muscle twitching and/or involuntary jerking of muscles
Unconsciously clench/contract muscles and hold them that way
Extreme muscle weakness – feel like I can’t brush teeth, write, feel like my body is so “heavy” when I’m walking or going up stairs, feel like my legs will give way etc.
Can’t finish thoughts, brain quits on me
Gas, nausea, heartburn, lactose iritability, digestion issues, blood sugar issues
Pangs/pains in chest (sternum)
Occasionally pass out (like once every other year)
Depression
Don’t want to/can’t go anywhere or do anything.
Feeling of pressure or swelling in my neck/thyroid
Fluttering in my chest/heart palpatations

When I am feeling dreadful:
Can’t move from the couch all day
Can’t think at all
Anxiety/panic
Conversation exhausts me
Skin hurts to touch
Feels hard to breathe

As you can imagine, my life is severely impacted, and my ability to function at a “normal” level impossible, as a result of this illness. I can’t even remember what it is like to be normal anymore. If I can accomplish a few small tasks in a day I am happy.

I know a lot of these symptoms fall under a lot of other illnesses and diseases. Combine them all though and ME/CFS is the illness I have been diagnosed as having.

*Please note, this is not an official list of ME/CFS symptoms. Here is one. If you suspect you have ME/CFS see a knowledgeable doctor (preferably one with experience dealing with ME/CFS).

Helpless

I know things can always be worse (please, no), but it has been a heck of a few weeks.

If all of you praying folks could please pray.
For a dear friend who is in hospice care, his young son and his family and friends.
For our family who lost a dear mother/mother-in-law/grandmother/great-grandmother.
For another dear family who just lost their main income and must move out of their home in two weeks and currently have no place to go.
For yet another dear friend who is going through custody and marital struggles.
For multiple family members struggling with health, substance abuse, no income and/or no place to live.

For all of these broken, bruised, battered hearts, lives and empty wallets please join me in praying to the Lord. Lord hear our prayers.

Swept Along

Today I am very much overwhelmed. I feel like I am being swept along in the current of life and we have hit the rapids.

School ended yesterday. The boys are camping with my parents. You would think that would mean peace and rest. But we still have little league Saturday, Tuesday, Wednesday, Thursday and next Saturday. And a birthday party Saturday for our oldest to plan, shop for and to host. And a end of the year school picnic tonight. My brain is foggy and I am feeling so overwhelmed. Life just keeps rushing forward and I keep thinking wait, WAIT! I can’t keep up.

Giving up today

Each day I wake up hopeful that today I will feel ok and be able to be productive. Days like today though, when I get to 1/1:30pm and haven’t been able to muster up the strength and energy to do anything, I know it is time to give up the day. Give it up to not being able to get anything done and just let go. Because otherwise I sit and stew and frustrate myself by thinking of all I wish I was doing. And that is just energy wasted. I have to let go and remind myself that the mess will wait. The dishes in the sink can stay there. The laundry will just have to go undone. And no one will die if we have leftovers or sandwiches or cereal for dinner, again. Not ideal. Not great. Probably not even good. But survival mode is what it is. And I will wake up tomorrow hopeful again.

And it doesn’t hurt to remind myself that we cleaned the entire garage this weekend, I gave the boys hair cuts and we were super busy to boot.

I made it (sort of)


I made it through our insane weekend. It was a lovely weekend to boot. I went on a women’s getaway, to a family wedding, church work day and Ray LaMontagne show. I also built a trellis in the garden and mowed the lawn! And I am surprisingly not as dead as I was expecting. However I am still wiped out and just like anyone with that kind of schedule, have a ton of things to do to catch up.

Our crazy schedule has not stopped either, nor will it any time soon. Little League keeps going and my hubby and oldest son are taking a trip to a Yankee’s game. So I am home with our youngest and a pile of dishes, dirty house, laundry, etc. Normally I think “I will wait and they will help with things.” Being so busy things just aren’t getting done. And now, knowing they are not here for a few days I suppose I need to tackle something. But I am also needing to rest. And my brain is not functioning. So I sit here thinking I really should do something but my body is refusing to let me.

There is always tomorrow right? The messy house will wait until then (or longer). For now I will have another cup of coffee and relax because I need to. Letting go of my ideal and my productivity driven self and reminding myself again that we will all live if things don’t get done.

Pacing when life won’t stop.

When you have ME/CFS life is all about pacing yourself. Stopping when you start feeling exhaustion setting in and using any energy you may have wisely and in small increments in hopes to reserve some and build more. But when you overdo things you pay for it. You crash. Not to mention it is so easy to overdo it because it is so easy to misjudge how much you have left in the tank and how your body will react.

My current problem though is life is forcing me to overdo it. We have a ton going on and I am already spent, exahusted, but I can’t not do the things we have coming up. Well I guess I could if it were an emergency, but I guess it is a combo of feeling like these are things I need to do and simply want to do. But I know I am going to pay for it next week, big time. My fear always is, what will push me into further, long-term, worse than I have been sickness. And there is no knowing what will cause that.

So I hope and pray and still have anxiety over it. I wish my body would just cooperate with life. I guess all I can do is try to pace and take small breaks during the insanity and hope the impending crash isn’t as bad as I expect it will be.

Pet Peeve Day

I feel I need to vent my internet pet peeves today. Maybe I am in a grumpy mood. Or maybe my gripes are legit and the people of the internet need to just stop!

Pet Peeve # 1
Can we please stop saying a recipe has “only three ingredients” when one of the ingredients is a box of a bunch of mixed ingredients?

Pet Peeve # 2
Stop with the lists already. The 10 things you must do. Or 15 things never to say to your kids/spouse/employer/etc. We’ve had enough. Life can not be boiled down to bullet points so stop trying please.

Pet Peeve # 3
I admit, I have found some of those silly internet quizzes to be fun but I think we can all agree their time has come and gone.

Pet Peeve #4
Can we stop with the hacks please? Life hacks, camping hacks, Ikea hacks, kitchen hacks. It’s just obnoxious. Tips, tricks, great ideas; there are so many descriptive words in our language. Use them.

Pet Peeve #5
I think we have all been chevroned to death at this point. Zig-zag stripes can go away now.

Pet Peeve #6
Your “Keep calm and . . .” is making me angry. Enough!

All of these things are about as obnoxious as forwarded emails, people who don ‘t understand how to BCC people in a group email and people who don’t know how to use Snopes before they spread stupid things around the internet.

If you like these things or do these things please don’t be offended by my rantings. Heck, who am I kidding, be offended if you want. Maybe we shouldn’t be friends. You needed to hear it so you’re welcome. Anyone who knows me, knows I am (mostly) joking anyway.