Symptom Survey Responses Indicate Cardinal Symptoms of CFS

[Hysterical Woman]

Klutzo

...

ETA - In my excitement over seeing your Maxine avatar, I forgot to answer your Elavil question. I was on 25 mgs., lowered it to 15 due to the heart palpitations it caused, and went off after 7 months. I needed Restoril to sleep at first,then cut down to a small dose of xanax. I took Darvocet for pain for the first 12 yrs. then went off it the hard way. I do not take any pain meds now.
I am still ANGRY that my doctor violated the Hippocratic oath, IMO, by not telling me that the Elavil could make me obese. I walked into his office as a normal weight person with a diagnosis of fibro, and 2 months later his treatment had given me the life-threatenting condition of obesity. It never occured to me that a doctor would give me a drug that could harm me like that, without even warning me. I was new to the world of chronic illness, and would have stopped the drug immediately, if I'd realized it was causing the weight gain. I assumed it was the illness, because a doctor would never hurt me like that. Now I know better, but I am still 50 lbs. overweight, since my thyroid went wacko from the fibro as well. I take medicine for it, but still have hypothyroid symptoms like many of us and can't get the weight off unless I eat less than 900 calories per day, which is dangerous. You are lucky, since Elavil only helps 15% of us, from the stats I've seen. I am sorry you gained weight too. It sucks.

Hi Klutzo,

I do feel lucky that the elavil has helped me with sleep/pain, I am not sure what would have done without it. I feel even luckier to find that magnesium helps me so much in that area. I believe, for me, that I have had a magnesium deficiency for years. But now my goal is to get off the elavil completely which I hope to do in the not too distant future.

As far as doctors warning about side effects, I am not sure many of them do this. There can be a long list of side effects for many drugs and I don't quite understand the reasoning for docs not to at least caution us about them. Are they playing the "odds" that we won't have those effects or do they just believe were are all psycho cases and if they warn us about side effects we will psychologically manifest them?? Maybe they believe that the side effects won't be as bad for us as the problem they are using the drug to treat??

Take care,

Maxine

 

[klutzo]

Peeing too much and drug side-effects

HI COMEBACKSHANE,
Maybe my bladder size didn't increase over the years because I never tried to hold it after that disastrous time at the movies when I ended up in he Emergency Room with tachycardia because I held it for two hours.
My urine is bright yellow in the morning because I take a mega B-Complex, but is usually clear the rest of the time. I often pee 3 times an hour, but always small amts. Pain in early morning gets me out of bed to pee once an hour. I may have interstitial cystitis for all I know. I will pee every ten minutes if I am stressed, like right before leaving for a doctor's appt. I will pee again as soon as I get to the doctor's office, pee again before I leave the doctor's office, and again as soon as I get home. Then, once I am relaxed, I go back to my normal every 30 minutes to one hour schedule .I HATE having to go to doctors and consider most of them less than useless, but I need medications to live, so they hold me hostage.
I also have the dry skin you talked about and have to use a nail clipper on the skin around my fingernails daily because it peels. I have had to put vaseline on my lips for decades. If I don't, they burn.
However, my doctors, including two Endos I've seen, have refused to run D.I. tests, saying my electrolytes would be abnormal if I had D.I. and they are always just fine, so it's moot. I will just have to drink more.
My friend who took desmopressin once and did not pee for 24 hrs. recently had an MRI, which found a benign pituitary tumor. I suspect many of us might have such things that could be causing this, though her doctors are denying that the tumor is causing any of her symptoms.

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HI MARKMC2001,
I gave up caffeine when I was diagnosed with Fibromyalgia 24 yrs. ago, since my doctor told me I had to give it up. It was one of the first things I was told to do to help myself. I wish it had stopped my peeing problem the way it stopped yours. I hope many others who read this will benefit from your experience and I am thrilled you got rid of the problem!

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HI MAXINE,
I had a doctor actually tell me that he never gives people side-effect info because they will imagine that they have them. ARROGANCE. That's right, we are all that stupid and easily led.... PUHLEESE.
They also get their info on drugs from drug company salespeople, who are not about to emphasize the down side or even tell them about drug on drug interactions. I learned the very hard way (I almost died) to always get drug info from my Pharmacist. Unlike most docs, they love to be asked, and will give you the whole story.


Regards to all,
klutzo

 

[CBS]

DI

HI COMEBACKSHANE,

<snip>

However, my doctors, including two Endos I've seen, have refused to run D.I. tests, saying my electrolytes would be abnormal if I had D.I. and they are always just fine, so it's moot. I will just have to drink more.

My friend who took desmopressin once and did not pee for 24 hrs. recently had an MRI, which found a benign pituitary tumor. I suspect many of us might have such things that could be causing this, though her doctors are denying that the tumor is causing any of her symptoms.

Your doctors are absolutely the most amazing people to ever have earned an M.D. Apparently they have figured out a way to diagnose DI with a simple look at your electrolytes. Yes, electrolytes are important and they yield a lot of info about fluid balance but a mild (perhaps even intermittent) case of DI can easily be addressed by higher water intake. Replace enough of what is going out with the right amount going in and guess what - NO ELECTROLYTE IMBALANCE. The upside is that in this scenario, even a doctor that was expert in DI would probably tell you to up your fluid intake and to keep a close eye out for any changes if there were no other signs of dehydration - lips and skin are not unimportant.

As for having seen two endocrinologists (and I have said this before on another thread), don't get me started. An endocrinologist who has never seen this in their career is probably more likely to dismiss the early signs and feel absolute confidence in the rightness of their error than any other specialty. I even had an endo who claimed to be a pituitary specialist at a local research hospital get this entirely wrong (and yes, I did write him a little note saying how disappointed I was - I also included all of the lab work verifying the DI along with a case summary by my present endo).

Pit. Tumors are common. That's another quite controversial topic. Endos often refer to them dismissively as "incidental-omas." My docs went back and forth for years (tumor?, empty sella?, cyst?, shadow?) and only recently did cyst win out. The Pituitary Network Association has some great info on pituitary tumors (www.Pituitary.org). It is my strong impression that many within the PNA do not believe in "incidental-omas" and the term is often seen as pejorative and quite damaging to a patient's chances for necessary treatment (CFS may be the worst group in terms of patient abuse but unfortunately, we aren't alone).

Shane

 

[klutzo]

Pituitary tumors

Hi Shane,
Thank you. I will pass along the web site to my friend with the pit. tumor. She has horrid tinnitus, facial pain and twitching that is constant and keeps her awake. Maybe some info on that site will help her. Like me, she has Lyme, and her symptoms are being blamed on that, which may well be true, but it is hard to sort these things out.

Thank you,
klutzo

 

[Mithriel]

I agree with you IamME. We keep getting surveys done which manage to miss out a lot of the important symptoms.

I am particularly disappointed with this one.

The most common symptom on the graph is labelled "post exertion"

The quote from the survey administrators says

The most common symptoms for all age groups are post-exertion fatigue

but the quote for what was asked about says

Post-exertion fatigue/relapse

Now the cardinal symptom of ME is post exertional exacerbation of symptoms while post exertional fatigue is what any healthy person gets if they decide to do the gardening at the weekend. It trivialises our experience once again.

I am sure it is not meant but the mistake is always the same way and gives ammunition to those who think we make a fuss about things other people just get on with.

It doesn't matter if the people doing the survey mean something specific to us, there are so many people out there just waiting for another excuse to put us down that everyone who knows the truth or claims to be on our side must be super vigilant in making certain nothing could be misconstrued.

Mithriel

 

[strobe]

bladder pain

I realize now that you weren't asking about bladder pain, but urgency. I think sometimes they are connected. And if not, maybe someone else can use this info.

Though that was not the original topic, apparently, does anyone here have information related to bladder pain? Is there anyone here with a medical condition that causes that sensation?

 

[Sasha]

Frequent peeing? Check yourself for OI!

People with ME/CFS who have orthostatic intolerance often have problems increasing their blood volume because when they try to increase their fluid & salt intake, they just lose it through frequent urination. I have OI and suspect I have diabetes insipidus as part of the picture - so, conversely, those of you who have the frequent peeing problem might want to look at OI! Here's a thread I started on it a while back, making the point that you don't need the dizziness symptoms to have OI and there's an easy test you can try at home for it.

Meanwhile, how odd that memory problems don't seem to have been included in this survey- they're part of the Canadian criteria and I would have thought a problem for most of us (word-finding etc.).

 

[klutzo]

strobe,
Yes, I have bladder pain. My bladder capacity is only 1/2 cup (Normal is 2 cups). If I try to hold in more than that, the pain becomes unbearable and stabbing, until I cannot walk normally. Holding it too long will result in tachycardia (heart rate over 104 bpm) when I finally let go and pee, and that high heart rate can go on for hours.

Here are some ideas for the cause that have been suggested to me. Maybe one of these could be the answer for you, though I have not gotten much help.

People have suggested interstitial cystitis, but I stuck to a special low oxalate diet for that for two years and it did nothing but deprive me of some very healthy foods.

Doctors have called it neurogenic and told me to live with it.

A hair mineral analysis said I had a severe imbalance between calcium and magnesium which would cause a contracted, painful bladder with a smaller capacity and frequent urination. That makes sense, since dairy has always been my main source of protein. I also have Lyme Disease, which robs the body of magnesium as fast as you take it in. I take four doses of Magnesium daily, do not take extra calcium, despite osteopenia, and eat a high magnesium diet. It has not helped, but I still think this answer makes the most sense for me.

In the mornings, my bladder pain is so bad I have to get up earlier than I want to. This seems to be related to my low back pain due to lumbar stenosis, which is also worse in the morning. A chiropractor told me I had the worst Piriformus syndrome he'd ever seen on my right side. That is a problem common in Lyme patients, somewhat similar to sciatica, but not quite the same. Exercises for it made it worse and did not help the peeing.

As for OI, Gracenote is surely right that this is a factor for many of us. My systolic (the top number) blood pressure does fall when I stand up, between 22-50 points! That is severe, but I have high blood pressure, so it is falling from very high, aka malignant supine hypertension, to slightly high, which is why I do not get faint. However, recently, I had to give up grocery shopping, after almost passing out in the check out line two weeks in a row. It seems if I stand for a long time now, I finally do get faint, and it takes an hour to do our weekly shopping.

klutzo

 

[BEG]

People with ME/CFS who have orthostatic intolerance often have problems increasing their blood volume because when they try to increase their fluid & salt intake, they just lose it through frequent urination. Meanwhile, how odd that memory problems don't seem to have been included in this survey- they're part of the Canadian criteria and I would have thought a problem for most of us (word-finding etc.).

Sasha, you are so right on about about fluid intake and increased urination. My husband once asked me why I don't pour the glasses of water I drink directly into the toilet saving me time and energy. Secondly, was cognitive dysfunction omitted from the graph? It is rapidly becoming the most annoying symptom for me.

Finally, Klutzo, very sorry for your problems. Someone mentioned eliminating caffeine, which is a bladder stimulant. Not a bad idea to eliminate that and all bladder stimulants of which I can name none because of cog. dys. except probably alcohol.

 

[jace]

IamMe wants to add

neuropathic pain
spasms/fasciculation
hyperacusis
disequillibrium
clumsiness/loss of fine motor control
dysphasia/aphasia
transient paralysis
hypersensitivity to heat/cold
episodic &/or paroxysmal nature of symptoms.

And jace wants to add
Tinnitus, vertigo and dizziness

Silly survey

 

[klutzo]

BROWN-EYED GIRL,

What your husband said made me laugh. I know it's not really funny, but if we don't keep our sense of humor, we are goners.

We finally adopted a policy of "if it's yellow, let it mellow" around here, because our water bill was so outrageously high, due to all my flushing. This can backfire if you don't flush about every third time, since the toilets just can't handle that much paper. I found out the hard way and had to do a lot of work with a plunger. What a mess! Now it's your turn to laugh I hope!

I would buy stock in the toilet paper company if I trusted the stock market anymore, which I don't. If your bum is sore from going a lot, that more expensive soft paper can get pricey too.



JACE - I agree they left out an awful lot of common symptoms. Some of the symptoms of this illness are so bizarre, I think they should always be included in any survey, since nobody would ever make them up.


klutzo

 

[Jerry S]

Sometimes I feel like a fancy Britta filter.

 

[jace]

It was in 'Meet the Fockers" that I first heard "If it's brown flush it down, if it's yellow let it mellow"

I have baths when I can - and keep the bathwater to flush with, bucket-style, unless I have guests. You can get away with 3 sheets of good loo roll, that for me is about 5 pee's

Ooops, too much information