Help me understand symptom severity

[joannqn]

I asked a few days ago what would cause intermittent fevers and the associated body aches and fatigues. Autoimmune disorders was one of the answers that interested me because 1) my grandmother had RA and 2) friends who've known me for more than a few years have suggested I get checked out for fibro.

 

So, I was looking at a book about autoimmune disorders and there was a symptom check list. Looking at that, a very clear pattern for CFS emerged with fibro being an obvious lesser pattern.

 

So, I looked that up and came across a description of CFS as "imagine being so exhausted you can't get out of bed for days". Ok, so I guess not.

 

But here's an example:

 

I cleaned out and organized half of the garage Tuesday. I spent about 7 hours moving stuff out, sorting through it, cleaning shelves (after I discovered I had been breathing mouse dropping contaminated dust), and replacing stuff. I went to Goodwill with one load and the dump with another. I was understandably tired at the end of the day. But Wednesday, I found myself unreasonably exhausted. My whole body ached like I had the flu, I was exhausted, and I had a low grade fever...yet I wasn't sick. It took all of my available energy to cook meals, do a few chores that couldn't be put off, and sit. I spent most of the day either sitting and reading. At times I was too tired to do that and took breaks to lay on the couch. Yesterday I felt a little better and took the kids to a scheduled playdate at the park. I sat and talked with other moms while there and walked across the street to purchase lunch. When we got home, I took a friend who had joined us on a 1/3 mile walk to see our local trail across the street. The rest of the day I was too tired to do anything but sit in a camping chair and read while my kids played outside. I asked DH to buy dinner. I managed to put half of the dishes in the dishwasher, leaving the rest that needed hand-washing for today. Today, I have a lot to do and I'm running out of time to put things off, but I having a hard time getting going. My hands, wrists, elbows, shoulders, back (upper and lower), and feet all hurt. The rest of me is just tired. I do feel better (no fever so far today), and I think I can get up enough energy to do some of what I need to get done but not all of what I want to get done. I know it is not normal to take three days to recover from a big work day, but I'm pretty sure that's a common pattern in me.

 

So, I guess I'm at a loss. When reading about stuff like this, the symptoms seem to fit but never seem to be severe enough. I'm not bedridden. It doesn't have a significant impact on my life because most of the time I'm either completely ok or I can push through. The exhausted to the point described above only lasts 2-3 days (sometimes a lesser achiness/tiredness lasts a few weeks) and happens probably once every 2-3 months. That's why I've never taken my friend's suggestion about fibro seriously; it's not that bad.

[Rebecca VA]

You did a lot of work! That would exhaust me, too.

 

Are you in good shape physically? Maybe you need to get stronger and develop more endurance.

[Rebecca VA]

Hanta Virus Symptoms:

 

http://www.cdc.gov/hantavirus/hps/symptoms.html

[joannqn]

Hanta Virus Symptoms:

 

http://www.cdc.gov/hantavirus/hps/symptoms.html

 

I've read up on that, and will be watching for that. I'm encouraged by the fact that there are only 1-5 cases of hanta virus per year in Washington state, and those are usually in rural areas (I'm not rural). I found a dead wood mouse (I think) in our front yard so I'm hoping it was a wood mouse that had visited our garage instead of a deer mouse. It was grey rather than brown.

 

 

What I'm experiencing now is "normal" for me.

Edited July 14, 2012 by joannqn

[Jean in Newcastle]

Joann - I have fibro and there is no way that I could work for 7 hours straight to begin with.

 

May I suggest that you take magnesium? You can take it in an epsom salt bath (it gets absorbed through your skin) or you can a supplement called CALM with hot water for a citrusy drink. Your fatigue, achiness and even your cough that you've been having could all be due to being low in magnesium.

[joannqn]

Yeah, I've never thought I had fibro, just other people have suggested it. There's no way I could do that amount of work today. Mixing up a batch of artisan bread (just adding ingredients and stirring them) has exhausted me. I'm now resting before I go deal with dishes.

 

I've been meaning to get some magnesium. I just haven't gotten it yet.

Edited July 14, 2012 by joannqn

[helena]

I have SLE (Lupus). I can (and do) put in a full work day like you did. There's hell to pay soon afterwards though. Wrists and ankles (and other spots) aching, low grade fever, nausea, too tired (weak) to hold up a book in bed... all common for me.

 

What I can't do is anything in the sun. Hiking is in my past. :sad:

 

I truly hope this isn't what you have... I'm sure that schedule would wear most moms out. Have you been tested for Lupus?

 

FWIW, I also use magnesium in baths and in Natural Calm. I just started using Ancient Minerals Magnesium Oil: http://www.ancient-minerals.com/products/magnesium-oil/

[joannqn]

I haven't been tested for anything. It usually takes me years to realize something is wrong. I tend to think everyone deals with "this" (whatever this is at the time). I'm hoping to track things for a while and deal with this with lifestyle changes until I can afford medical care for this. It'll be a while.

 

 

That's why it took me twenty years before I realized that my menstrual bleeding wasn't normal. The pamphlet they gave us in 4th grade said not to worry because it looks like more blood than it is. So, that's what I did despite all of the obvious symptoms. It wasn't until I started using the Diva cup and estimated that my monthly blood loss was 180mg (3/4 cup) that I fully understood something wasn't normal. That's double the amount of loss required to be diagnosed with menorrhagia. (I have other symptoms too.) I still have no idea why it is happening; I was just given a continuous use BCP to prevent periods entirely back in February, and that's the extent of my treatment for that.

 

Oh, and the fatigue isn't anemia. Every anemia test I've had has been negative.

[The Governess]

.

[helena]

It's amazing how expensive health care is, in dealing with Lupus. And yet, there's "nothing much they can do" for me. :glare:

 

Have you noticed if your symptoms are worse after being in the sun or in florescent lighting? Staying out of the sun (as hard and sad as it is), was a major turning point in my health. I'm not saying you have Lupus, just that if your looking for ways to test the symptoms out, you might want to experiment with it.

[joannqn]

It's amazing how expensive health care is, in dealing with Lupus. And yet, there's "nothing much they can do" for me. :glare:

 

Have you noticed if your symptoms are worse after being in the sun or in florescent lighting? Staying out of the sun (as hard and sad as it is), was a major turning point in my health. I'm not saying you have Lupus, just that if your looking for ways to test the symptoms out, you might want to experiment with it.

 

No, sun is not my problem. I miss the sun. I love the sun. I live for the sun. When the sun is out, I'm happy and feel good.

 

If I had to guess right this second, I would say activity and stress would be contributing factors. I do try to keep stress at a minimum because I get stress-caused migraines. I've been able to reduce them to about once a year. I lead a very low stress lifestyle, though I've recently upped the stress load.

[Rebecca VA]

JoAnn, how are you feeling this week?

[Katy]

Allergies?

 

I get mild fevers and exhaustion and even GI issues the day after heavy exposure to allergens (Mold, dust, some other things). I can always tell that's what's up because taking a couple benadryl gives me more energy instead of making me sleepy. When it's not allergies, benadryl knocks me out.

[LizzyBee]

Joann, I work with two women who have fibro, and your symptoms sound a lot like theirs. You don't have to be bedridden to have fibro; both of my co-workers work full time in a demanding career, including a lot of overtime during tax season. Pain, fever, and exhaustion are pretty significant symptoms.

 

How long has it been since you've had bloodwork? I was having issues with fatigue, water retention, night sweats, and shortness of breath, but I wasn't "sick" and I was sure nothing serious was wrong with me. Come to find out, some of the most serious diseases have only mild symptoms. If it's been a while since you've had a physical and bloodwork, please call and make an appt.

 

:grouphug:

[Elizabeth in MN]

I'll speak up for the CFS issue. I'e had it since I was 13, but they didn't figure it out until I was 19 and I'm 39 now. Twenty years with the beast of CFS and I know it.

 

You could have a mild case of it. Most people, when they first come down with CFS, are down for the count the first year. It's "normal" for us to be too exhausted to bathe in that first blush. Most people recover in a slow and steady way, but are always cautious with their physical energy. Most people do eventually have a full recovery.

 

One thing to get tested for would be Epstein-Barr Virus. Many people with CFS test positive for it and there is a treatment for it.

 

One thing I want to say is to Helena - I love my Nook Simple. I can read in bed again because it's so light. It's almost like being normal : D

[readinmom]

I'm curious about the answers you get, also. I tested negative for lupus and other autoimmune disorders. I have the same symptoms you have.

 

Keep us informed!

[Sugarfoot]

I have Hashimoto's Thyroiditis, and I would feel almost identical to what you described after working like that for 7 hours. I'm in pretty good shape, too.

 

My DD 14 has a low-level auto-immune "something" that is so far un-labeled, but definitely "there."

 

It's hard, because I'd love to have the endurance that I used to have and be able to just do what I want/need to get done.

 

I try to keep my diet "clean," take good vitamins, exercise, drink lots of water, stay away from caffeine, sleep enough, rest when I need to.

 

Lately, what's helped me most is working with a personal trainer. I've gotten quite a bit stronger, and that's helped in so many ways. I have less achy-ness, my joints hurt less, it takes more for me to breathe heavy, etc.

 

:grouphug: Hope you figure it out.

[Oakblossoms]

I know it is quite a drive. But, I have had recommendations for the Bastyr clinic in Seattle. If you are uninsured, they have a sliding fee scale. And, I believe the first visit is free.

[helena]

I'll speak up for the CFS issue. I'e had it since I was 13, but they didn't figure it out until I was 19 and I'm 39 now. Twenty years with the beast of CFS and I know it.

 

You could have a mild case of it. Most people, when they first come down with CFS, are down for the count the first year. It's "normal" for us to be too exhausted to bathe in that first blush. Most people recover in a slow and steady way, but are always cautious with their physical energy. Most people do eventually have a full recovery.

 

One thing to get tested for would be Epstein-Barr Virus. Many people with CFS test positive for it and there is a treatment for it.

 

One thing I want to say is to Helena - I love my Nook Simple. I can read in bed again because it's so light. It's almost like being normal : D

 

You know, I think my husband has one of those! I'm looking around right now to see if I can read the paper on it, it looks like you can. Right now I prop up my cell phone to read in bed, but it's hard to see. :001_smile:

Thanks for the suggestion.

[joannqn]

The fever, achiness, and fatigue let up on day 4. I've been busy packing and out of town since then. I'm still having symptoms from the reflux-or-whatever-it-is so I need to deal with that first.

 

I did have an incident in high school where I was extremely weak and fatigued for a couple of months. My parents never took me to the doctor so I don't know what was wrong; it eventually resolved on its own. Some of the thoughts people have shared brought that to mind.

 

I also bought a health journal so I can start keeping track of what I eat and symptoms to see if that reveals any patterns.

[Sun]

JoAnn, I have lupus, and I have symptoms very much like what you describe when I'm going through a flare-up. If I overdo it one day, I'll be paying for it by evening and the next few days (only when I'm in a flare, though--I can go years without any big problems). I've recently stared a new medicine that seems to have made a big difference in the general achiness (flu-like aches) that have been giving me trouble lately. I say that to give you hope--once you figure out what's going on, there may be some things that you can do to help.

 

By the way, sensitivity to sun is really common in lupus patients, but it's not present in all cases.

[Quad Shot Academy]

Could it be the BCP? They make me very sick. I have been having similar symptoms and I think I just figured out that it has been poor sleep. I have been taking 5HTP before bed because of insomnia for 9 years. I have not had insomnia in a long time and was sleeping 10 hours a night, so I quit taking it. Now I sleep 8, but I think it is a very light sleep. I just started taking 5HTP 3 nights ago and so far so good.