Fibromyalgia/CFS

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Mirdath said:
‘First-year med student syndrome’ strikes again 🙂

Anyway, I’ve been keeping up with this thread a bit, and wanted to ask: what advice do the rest of you have for those of us who have afflicted spouses and family? I’m doing what I can, but I want to know how to do better.
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The things my husband has done have been better than anything I have experienced otherwise, from so many people who just “mean well.”

He treats me the same whether I am sick or well. To him, this is just part of who I am. I would say that is probably numero uno on the list of treatment. When plans get blown because of my health it is just no big deal. If I am well he reminds me not to overdo it. If I am too sick to get out of bed he makes me breakfast in bed as if it were a special occasion. (He’s a chef though.) He compliments me on the little things I do get done.

Most importantly…he makes me laugh.
 
Oh yes, LittleDeb! Hooray for you and your husband and all those close to you! Hell is right here on earth for some of us, but so can heaven be, even for those of us who suffer incurable illness. Laughter and pure, gleeful manic optimism are what have always kept me running somehow, and now that I am not alone in this, we can propagate that hope and slightly-crazy joy!

Hold that man, hold that woman…squeeze and please that person, give them all your love; Signify that love!
 
Is there any relief for the discomfort?

Painkillers don’t work on me.
 
Didi said:
A drastic change in diet has helped me a lot. I avoid all wheat and dairy products and that eases the pain for me.
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But—but—those are two of the four basic food groups, along with chocolate and potato chips!

😃

How long do you have to try that before you feel an improvement.
 
Didi said:
A drastic change in diet has helped me a lot. I avoid all wheat and dairy products and that eases the pain for me.
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I just stumbled upon this site and I think I may have found some insight into problems I have been having for years!

I always thought that it had something to do with having had Mono, almost 15 years ago, and I’ve never felt right since. I’ve never regained the energy I had before that illness (I was in my early thirties at the time) and I’ve had constant muscle and joint pain which I attributed to arthritis, which seems to run in my family. The pain is only relieved with Aleve, but I have to take Prilosec for my stomach because of the irritation and limit the amount of Aleve I can take.

I’ve lately developed the sudden reddness, which I thought was Rosacia, and now I have come down with skin pain across my back, an itching that turns into stinging and then burning, almost like a severe sunburn, where my clothing causes me tremendous pain.

And you say that eliminating wheat and dairy can relieve some of this pain? Can it really be as simple as that? :eek:
 
I’m not saying that a change in diet will help all of your symptoms, no. But for me, eliminating wheat and dairy has helped drastically with the joint pain and the headaches.

Those are the major diet changes, but I also drink a lot of water (close to a gallon a day), take HMF powder (human microflora) to help with digestive issues, take several supplements, eat organic as much as possible, no caffeine, little sugar, no artificial sweeteners or processed foods, lots of other grains, etc.

When I do “cheat” and have wheat and/or dairy, the pain, bloating feeling and digestive issues all get much worse.
 
It’s important to understand that there is no “standard” treatment for CFS. Usually, what works for one person may or may not work for someone else.

I know some people that have found pills that help them with various symptoms…but I’ve tried several, and almost always had side effects, allergic reactions, and/or a worsening of symptoms.

Many people find a change of diet helpful…and there are many ways to do this. I reduced some of my symptoms by avoiding certain dyes, chemicals, and/or preservatives in certain foods. And going lower-carb is helpful for many.

So you just have to keep trying things until you find things that work.
Tif
 
Sailor_Kenshin said:
But—but—those are two of the four basic food groups, along with chocolate and potato chips!

😃

How long do you have to try that before you feel an improvement.
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:rotfl:

I have modified my diet somewhat…and it has helped. I am also on some medications for RA…it is difficult to tell if my RA symptoms are from RA or FMS/CFS. The methotrexate, plaquinel and the enbrel does help with the aches and pains but not the fatigue…
 
TraderTif said:
It’s important to understand that there is no “standard” treatment for CFS.

:amen:

I know some people that have found pills that help them with various symptoms…but I’ve tried several, and almost always had side effects, allergic reactions, and/or a worsening of symptoms.

I have this issue as well. There are even very few over-the-counter medications that I can take. Do you find that you are chemically sensitive to other things – perfumes, cleansers, etc.?

So you just have to keep trying things until you find things that work.

:console:
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Dunno whether it’s because I’m reading this thread or what, but I am having one heck of a flare-up today.

:eek:

Lucky for me potato chips are neither wheat nor dairy.
 
Didi said:
I have this issue as well. There are even very few over-the-counter medications that I can take. Do you find that you are chemically sensitive to other things – perfumes, cleansers, etc.?
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Totally!! I can’t even take Tylenol because it gives me chest pains! And I go crazy trying to avoid perfumes and things!

But, now that I avoid a lot of those things as much as possible…I do feel a little better…🙂
Tif
 
It used to be that I couldn’t even walk down the aisle at the grocery store where all the cleansers are without getting nauseous! That has gotten a little better, although I use mostly white vinegar and baking soda to clean with, so I don’t have to go down that isle very often!

Also used to bother me when incense was used at Mass. I can tolerate it now, but sometimes it still gives me a headache.

I can’t go to big department stores because of all the perfume smells.

I thought of a couple more weird symptoms that I wonder if others experience.

I often either have very dry and itchy eyes, or they are watering.

Also, if I get a “crease” in my skin from sleeping or sitting a certain way, it takes forever for it to go away. (You know, like when you get a line on your face or arm from a sheet?) One time this happened and it was hours before it went away. My doctor said it’s because my tissues don’t recover quickly.
 
Didi said:
Also, if I get a “crease” in my skin from sleeping or sitting a certain way, it takes forever for it to go away. (You know, like when you get a line on your face or arm from a sheet?) One time this happened and it was hours before it went away. My doctor said it’s because my tissues don’t recover quickly.
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**I’m like that too… but the length depends on how bad I feel. I heard a girl say (when i was a kid) that she had to take her glasses off 1/2 an hour before school pictures so she wouldn’t have those impressions on her nose. I wore glasses too…but my impressions took hours to go away…🤷

Malia**
 
One of the hardest things for me is when I start to go downhill again with more symptoms and more fatigue. I’ll have a few days where I feel a little better and can actually get some things accomplished. Then (like today) I sort of feel myself “slipping away” again. Do you know what I mean?

I think of the movie “Awakenings” where the doctor stumbles across a formula that brings people out of their catatonic state and they begin to walk and talk and be themselves again. Then, for unknown reason, the medication fails to work and they begin to slip into the catatonia again. Sometimes that’s how it feels. I’m slipping away again and there’s nothing I can do about it.😦
 
Whatever it is I have, I gotta say this week has been the worst flare-up I can remember. Usually it’s gone in a day or two—I’ve been like this since Monday.

:eek:
 
I’m so sorry you’re having a hard week. It’s so frustrating, isn’t it? It’s hard not knowing day-to-day or sometimes even hour-to-hour how you will feel. Guess it just emphasizes our need for God in our weakness.

Lord Jesus, in our weakness, be our strength; in our doubt, be our hope; in our sadness, be our joy!:gopray2:
 
Sailor_Kenshin said:
I can offer this up, right?
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Absolutely!

Here’s a favorite prayer of mine:

O my Lord Jesus Christ, I lift up my heart to You in my suffering and ask for Your comforting help. I know that you would withhold the thorns of this life if I could attain eternal life without them. And so I commend myself to Your Loving Mercy, accepting this suffering in Your Name. Grant me the grace to bear it and to offer it in union with Your Sufferings. Regardless of the suffering that may come my way, let me trust You always, for You are my Lord, my God and my All. Amen.
 
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