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).

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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.

This Is M.E.

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May 12th is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia awareness day.

Today I am joining the #ThisIsME and #May12BlogBomb campaigns, and bloggers around the world, by blogging about my illness. The following quote and questions were composed by Louise at TheGetUpAndGoGuru. What she said applies to me as well so I have included it here.

This Is M.E.

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!

What is your name and how long have you had ME / CFS?

My name is Cheryl and I have had ME for about 9 years total. I got sick shortly after having our first son, almost eleven years ago. When he was four I started to feel better and had about a year of being healthy, but after having our second son, almost six years ago, I became sick again and have not recovered.

Age

34

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

I’m not sure there are five things left about me that aren’t illness related. Certainly not five the people in my life don’t know. And certainly not things that don’t being with “I used to”. And I am pretty much an open book, but here goes . . .

1. I blog here.

2. I am an introvert.

3. I really do not enjoy cooking but like to bake.

4. I like cheese. I do not like movies or TV that are disturbing, crass or make me think. I want silly, funny and cheesy. I do enjoy mysteries and documentaries though. And I do like cheese the food as well.

5. I generally only read nonfiction. I also like biographies. I very rarely read fiction.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1. I have a lot of pain. I try not to complain though.

2. I am afraid of how bad this illness can get. Will I end up bedridden?

3. There are weeks at a time where I can not do anything. If I leave the house it saps all of my energy and nothing gets done at home.

4. I feel guilty, about pretty much everything, but especially if I use the little energy I have to do something I would like to do instead of something for my family or something that needs to be done.

5. If it seems like I am distracted or not listening, give me a minute. It is probably just that I am having trouble processing, thinking, and responding.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

This is a very serious illness that can cause one to become bedridden and can even cause death.

What is the most frustrating aspect for you of living with ME / CFS?

Feeling like I am being forced to watch life go on without me. Having to watch as my family experiences life while I sit on the couch.

Anything else you’d like to say before finishing?

I feel like the point of awareness is to promote action. So here are a few of my suggestions on what you can do to help.

1. Come clean my house. No, seriously though, if you want to that would be amazing. Ha, but really, if you know someone who is chronically ill, please help. Go clean their house, do laundry, make meals, etc.

2. Write, email or call your elected representatives requesting more research funding for ME/CFS. The only way we are going to solve the mysteries of what causes this illness and how to help treat and/or cure it is through research funding.

“The problem is that you need a champion in Congress who’s going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done. That’s all the NIH cares about.. . . But they don’t listen to scientists. Congress doesn’t listen to scientists. They listen to people who vote for them. . . . The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby.”
Dr. Ian Lipkin
from a interview posted on CFS Central

3. Spread the word. Encourage the people you know to learn about this illness and to take action.

4. Donate to one of the many wonderful organizations that are trying to raise awareness or do research. Here are a few of my suggestions.

Bent But But Broken

The Microbe Discovery Project

The CFIDS Association of America

Step Up For M.E.

5K

They ran a 5K.
I couldn’t get up.
They got home.
I was just getting up.
They are sore.
I am sore.
Their muscles hurt.
My muscles hurt.
They ran a 5K.
I sat on the floor and played for ten minutes and could barely stand back up.
They will recover.
Will I? Probably not.

I am tired and sad and so sick of having to miss out on life. I wanted to be there. I wanted to cheer. I want to live life instead of having it pass me by. It keeps going, they keep going, they keep growing. I keep sitting, resting, sleeping, hurting, not being able.

They ran a 5K.
I am proud. I am happy for them. I am sad I couldn’t be there.