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Adrienne Dellwo

Update: Fibromyalgia's Ripple Effect

By March 29, 2013

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I wrote a couple of weeks ago about how fibromyalgia has led, indirectly, to other health issues. (You can read that here.) While I don't have a completely clear picture of what's going on yet, I wanted to let you know that things appear to be better than they did at first.

It originally looked like my liver could be having serious problems, but further testing has shown that, other than having a small amount of fat, it seems to be doing just fine. The localized pain has decreased about 90% after cutting out my daily prescription anti-inflammatory. A cocktail of digestive meds has eliminated my nausea after eating and other digestive symptoms.

So what's going on? It looks, as usual, to be multiple things at once that, together, created a confusing picture. The methotrexate I went on for arthritis apparently was one drug too many for my liver and it got aggravated, which caused the pain.

We're still exploring the nausea and other food-related symptoms, but my doctor is thinking it could be an ulcer. With how stressful my life has been for the past few months, I guess I can say that I earned that one.

Add to that not one but TWO kidney stones currently working their way through the pipes, and you can imagine what kind of abdominal pain I've had!

This brings to mind an urgent care nurse practitioner who got to know me really well several years ago, who once looked at my husband and said, "It's never just one thing with her. You'd better get used to that." How right she was. And I know a lot of you fall into that category, too.

So now, it looks like the fatty liver was pretty much an incidental finding. Knowing that a problem could be growing there gives me added incentive to lose weight, but it's not the intense pressure and stress of serious liver disease.

Now, wish me luck figuring out the digestive thing. And a huge thank you for all the comments and well wishes a couple of weeks ago - they really helped me get through a scary time.

Do you tend to get clusters of problems like this? What have some of yours been? Leave your comments below!

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Comments
March 29, 2013 at 9:04 am
(1) Paula says:

Me too!!!!!

My doctors nicknamed me the “one percenter” when my lungs ( “…the worst lungs my doc had seen in his 18 years) didn’t respond to a year of heavy steroid therapies to include oral prednisone, steroidal nebulizers three times each day, nasal sprays, and multiple asthma inhalers of the highest strengths. Turns out I had severe reflux requiring surgery. Pre-op, had to endure many nasty GI tests because of other concerns that turned out to be valid… I learned my esophagus was/is failing me with only 2 muscle contractions to get food down instead of the 10 muscle contractions I should have. Hmmm…
Post op came and I wasn’t feeling much better…that’s because in the year to follow that surgery I was diagnosed with Fibromyalgia, the sleep disorder called idiopathic hyper somnia, immune deficiencies requiring monthly IgG infusion therapy, colitis, and finally, my extreme fatigue, which we all wrote off as a result of “Fibro” and my daily lack of restorative
sleep , turned out to be much more. I needed a pacemaker for my Bradycardia that had ever so slowly become more prominent. While sitting in my doctors office one morning, he couldnt believe my heart rate
was 28, yes, 28. After an hour or so, we got a HR reading of 31. Yup, I needed a pacemaker at 48 years old. (I’m a non-smoker, am 5’9″ and weigh 130 pounds). Got the pacemaker and six days later, got to do it all over again when the ventricular lead came loose and many days of pericarditis. (met some very lovely paramedics that first night of pericarditis). Who knew?
My message to anyone reading this post, keep on looking for medical explanations for your pain and other life altering symptoms.
Don’t assume every ache and pain is Fibro related because it may be something else.
My doctors attitudes have been humbled with my case…all 21 of them to include my own brother, a cardiologist.
I choose to think that I am assisting in my doctor’s fibromyalgia education!

March 29, 2013 at 2:36 pm
(2) Debbie says:

I’m tired of reading about “no good news”. I’m glad you have a husband , and a dr who seems to know anything about you’re condition. I’ve had CFIDS for 15 yrs now. I’m alone, broke, and a renter who is now facing the issue of again trying to find yet another place to live. I have been to over 8 drs I 6 yrs trying to find one who knows even the slightest amount of info on the disease, let alone how to help me. I’ve been in a crash phase for almost a yr now and I’m over trying to try anymore. I’ve lost all my friends. The only time the phone rings is when a creditor calls and they are relentless. I’m so damn sick of it and trying to survive.

March 29, 2013 at 2:49 pm
(3) Julia says:

Hi Adrienne,

I am glad to hear you are feeling a bit better.! I hope you keep improving.

I just wanted to say that, yes, when stuff happens to me it seems to come in clusters. I was diagnosed with fibromyalgia & CFS 7 years ago but have been sick a long time before that.

I have tried for the past 7 years to try and help myself feel better to no avail. No matter what I did, it didn’t make any difference until I realized the effects of MSG on people with Fibro and CFS. I cut all MSG out of my diet and I can’t tell you how much better I feel! I want to tell everyone with these issues to give it a try. Research it and find out just how devastating it is on our bodies. Every system, organ, etc. It is just terrible stuff – poison really. I can’t say it will help everyone but I wanted to share my new found relief!

At the very least, anyone with FM and CFS, please read up on it!

Is there anyone else on this site who has found relief from getting MSG out of their diet?

March 29, 2013 at 3:26 pm
(4) Linda says:

MSG isn’t the only bad thing. I recently ate a new breakfast cereal and immediately got a severe migraine. It was packaged in BHT, another horrible preservative. If you google BHT and migraine it is an eye opener. Wishing the best for all fibro sufferers!

March 29, 2013 at 4:10 pm
(5) Shelly Burton says:

Yup! I another “multiple” LOL
FMS for over 15 years and have an extra beat in my heart. Skin problems, and Hashimoto’s throiditis. Osteoarthritis that has now taken over my lower back, and I have been suffering with sciatica for several months. I had an MRI taken, because the Chiropractor couldn’t explain why I wasn’t getting better, and I have 2 cysts at the nerve roots in my spine!
Plus fibro or arthritis decided to flare up and I had to take prednizone to reduce the inflammation. Now I can only hope that the pain subsides with the epidurals, but if not, surgery is in my future. With it being arthritis in my back, I have been warned that it will only progress as I age. And I am 54 now!
So sorry to hear that Adrienne, and I am with ya girl! Quirky, weird? Yep, that would be me!!!!

March 29, 2013 at 4:44 pm
(6) barbara says:

well adrienne, after reading your post about your liver, i thought i better check into milk thistle. i bought some and i am guessing that if you are trying to detox your liver you better quit the meds that are causing the pain, which i DIDN’T do, hence a really nasty gall bladder attack. i stopped the milk thistle. when i am ready to do something i will have it here.
glad to hear you are better and things are not as bad as they seem.
debbie, sorry to hear of your poor health and life situations. do you pray? believe in a higher power? i am a sincere believer that it helps to pray, and positive things will happen, not overnight, but they will happen. God helps. best of luck and some prayers, barb

March 29, 2013 at 5:37 pm
(7) kaytee says:

“Donít assume every ache and pain is Fibro related because it may be something else.” Paula

Oh, yes…. Like a broken bone. Because, yes, it “hurt”, but once the initial injury was iced, the pain wasn’t all that more than the usual aches and pains. I went three weeks with an untreated broken wrist because of that. And you know what? It still “hurts”… but rarely at the point of the break.

Lately, the “problem” has been lower back pain. Even Motrin wasn’t helping, although it usually would work relatively well for me. Finally went in, had “blood work” done– creatinine levels were a bit high, indicating some sort of kidney problem (cause of pain??), and I was told to stop taking the Motrin. Also: no Tylenol and no aspirin. The back pain has decreased, but the joint/general aches and pains are keeping me from sleeping well, and lack of sleep makes everything else worse.

March 29, 2013 at 5:57 pm
(8) Shakota says:

Debbie, your comment touched me. Are you on a list for HUD housing?

Having a housing voucher made all the difference in my income and well worth the trouble. The wait can be several years.

Please don’t give up!

March 29, 2013 at 6:01 pm
(9) Debbie Dionne says:

It is never one thing. The fatty liver is a concern as I had an ultrasound for my PCOS in 2008 and was told ihad it, that was my incentive to lose 128 lbs since. However, back to your ultimate problems, I had been on high doses of ibuprofen, vioxx, relafen, etc from 16-40 years ild. The ultimate outcome was mild kidney damage, never ro take an NSAID again ulcerative colitis, gerd, gastritis, duodenitis, esophagitis, partial bowel removal, esophagial stretching. Then my rhemy decides (because ofmy INSURANCE CO) that he is going to try nethotrexate, I thought I was dying for 2weeks.

Now altho it scares me Itake Enbreland so far it helps some. Co-morbid conditions I think go with the territory.

March 29, 2013 at 6:45 pm
(10) Sandy says:

Methotrexate…seems to cause more issues than it is worth! I went through all kinds of tests, drs. appointments, vomiting, etc. Yelp, it was the drug, no gall bladder issues at all. Stopped the drug and all was well within a couple weeks time after suffering for about 2 months. I had been taking it for a couple years…Glad you are feeling better! :)

March 29, 2013 at 6:57 pm
(11) Barbara says:

So sorry to hear of the problems you are experiencing. I pray that they are resolved soon.
So glad to see your article about the nerve pain/neuropathy, temperature sensitivity and all. Today the ridiculous pain but numbness is from my feet up to my “rear-end”!!!! So uncomfortable I can barely take the pain. The Neurontin only helps to a certain point, but it makes me feel nauseated. I find it nearly impossible to manage the hot then cold body temp. I’m wearing loose clothing inside-out because the fabric seams cause additional pain. My skin is extremely sensitive and so today I have started using some First Beauty First-Aid cream, hoping it will help. Most days I feel “like a total mess”! My energy level is non-existant, can barely move. There’s so much to be done here in the house, but I can’t get it done!
Don’t mean to sound like a “cry-baby”, its just another one of those days!

March 29, 2013 at 7:58 pm
(12) Abot Bensussen says:

It’s been months since I had bronchitis, and my energy is still very low. Today I finally was able to get out, bring things to Goodwill, send a skirt back to a TV shop, (the only way I can shop now). I walked my new dog half of a block, and am so exhausted now, wondering if I can get out of bed tomorrow!

It’s taken me months to do these errands. And it’s left me in pain, and totally used up. Some days I just stay in bed, and it is not good for my mood or my health. I am trying to walk up the same block every day, and would like to walk further but it doesn’t seem possible. I get home winded and sweaty. Poor lil’ rescue poodle, dying to smell the whole neighborhood.

March 30, 2013 at 5:54 am
(13) Sca says:

Check out probiotics and digestive enzymes. Meditation combined with amygdala tickling and stimulating the pineal gland (third eye)

March 30, 2013 at 9:01 am
(14) christine says:

Hello Debbie, Your words of brke and alone resonate with me, other than the Doctors I have truly been blessed with her. In the last year I have had to file for bankrupsy, The creditir calls do not stop, my heart beats faster evertime the phone rings. This condition has ruined my life , every little thing is so challenging to complete. It is so difficult to go it alone. I will keep uou in my thoughts and prayers. We must be here for a reason.

March 30, 2013 at 9:20 am
(15) Julie says:

I often get comments about being “complicated”. I’ve been chasing a weird abdominal pain for almost a year now, through every Dr I have, and about every test on the planet – even exploratory surgery that turned up Endometriosis. It’s no fun, so I totally feel ya and I’m sorry you are having to go through this.

March 30, 2013 at 12:11 pm
(16) Michelle says:

Adrienne, I am very glad to hear things aren’t as bad as they seemed for you a few weeks ago. I just want to thank you for the work you do to keep us all informed and up to date. It makes our conditions easier to bear plus is educational. It is obvious you put your heart and soul into the newsletters and I am sure it comes at a great price to you. So, again, thank you and I hope you continue to make progress, find solutions and feel better!
Michelle

March 30, 2013 at 2:09 pm
(17) Shosh says:

Adrienne so sorry you are not well. You asked about clusters. The year after I was diagnosed I had Lyme disease, rotor virus, shingles and glandular fever and spent most of that year in bed – my knee also packed up that year. After 10 days in hospital with the glandular fever I was told I was depressed – duh – after such a year I think I was entitled to be depressed

But I now know that I have had fibro most of my life but was told I was a hypochondriac. At the moment your article on neuropathy touched a nerve (sorry) and am having EMG tests this week for pins and needles – more like hot coals on some days, in my hands and feet and a numb right thigh which wakes me up with the pain. Hope they find something they can treat.

Btw I cannot touch MSG nor most other preservatives, nor milk products, nor wheat , nor meat, nor high glycemic, which means most fruit, nor citrus, but take many supplements to compensate. Very expensive. Returned from overseas – a 9 hour flight two weeks ago and have still not recovered.

Hope you feel better soon.

March 30, 2013 at 2:33 pm
(18) Debbie says:

My profound thanks to all of you who offered support and prayers. I did get food stamps (great fully) for awhile until Gov. Jan Brewer cut the budget. I was able to re-apply, but the amount of paperwork and info. Gathering was too much for my brain to handle, so I let it go. I don’t know about HUD, but I don’t imagine it would be any different. Just don’t know what to do, but I’m over it now. There is no quality of life anymore. Hasn’t been for a long time. While I’m NOT suicidal, I do wish I were dead. Then maybe I’d finally be at peace. I am an atheist, but I respect all religions, and again, I appreciate all your prayers. I hope with all my heart a treatment is found soon to help all of you.

March 30, 2013 at 6:09 pm
(19) Christi 100 says:

Sorry for all your pain, Adrienne, and yes, too many meds can damage the liver. Do hope you get better.

Julia, I too cannot use MSG. Also, don’t eat gluen, nightshades (have terrible reactions to this i.e. arthritis flares) Nightshades includes tomatoes, potatoes, eggplant, any kind of peppers. Preseravatives and artificial flavors and colors also bad. Kind of limits what you can eat! I went to see a rheumatologist last year and he ran all kinds of labs and I don’t have any autoimmune diseases, but I drew the line when he ordered 16 xrays. I don’t want to glow in the dark. The rheumatologist suggested I may have a condition called hyperextension disorder or/and fibromyalgia. Hyperextension disorder is caused from overextending your joints when you were a child. Remember when you had double jointedness in your fingers, wrists, hips etc. or could do back bends etc. Well, I guess this affects your joints, ligaments and tendons in later life.

Anyway, I know I had fibro as a young child. My legs always hurt so bad and my mother had to rub them every night. I was also sick with nausea and vomiting at least once a month and have always hurt but always tried to keep up with other kids I’m sure you all know how that goes.

Sca–what is “amygdala tickling” and “stimulating the pineal gland”. Very interesting sounding concepts. Please explain.
Chris

April 1, 2013 at 7:11 pm
(20) Valetudinarian says:

Adrienne,

I read you have a few kidney stones brewing. Have you had kidney stones before? If so, have they been analyzed? Do you know what kind they may be now? If you don’t mind answering….I am very curious.

The straining is a pain and the pain is a strain!:) this may sound silly but I admit catching a kidney stone in the strainer is pretty thrilling as it is a very validating piece of proof to the pain experienced.

My “fatty liver” was also am incidental finding. I make a ton of kidney stones, too, so I am familiar with your pain as well as that with Fibro/CFS….

I commented on your 1st article and you have
been in my thoughts. I am so happy you got good news!

April 2, 2013 at 2:03 pm
(21) Marline says:

Hi Adrienne

I hope you were told to avoid certain foods and beverages to prevent the formation of additional kidney stones. If they are made of oxalate, as most are, you need to start drinking a lot of water. No black tea, however, only green or white; no spinach or beet tops; no rhubarb. These are the foods highest in oxalate. By the way, stones can be crushed using sound waves (or some other type). You don’t have to suffer the pain of having them pass through, and if they get stuck, needing surgery. Those of us who have FM do not do well with surgeries.

April 4, 2013 at 10:15 pm
(22) Valetudinarian says:

I just had an aha moment! Adrienne, i hope you are reading this!

In addition to your article about fatty liver, I have consequently seen a few things on fatty liver in the last few days that have made me think twice about it.

First, I was watching Dr. G: Medical Examiner and she dxd a 32 year olds fatty liver as a consequence in her death that was caused by weekend binge drinking. Dr. G also mentioned that although it is unknown why people die from fatty liver disease, she sees several deaths because of fatty liver each year in her morgue not associated with alcohol abuse! Interestingly she showed micro slides of a fatty liver. The fat isnt like adipose tissue (fat) we store for energy. the “fat” in a fatty liver is a triglyceride! The slides looked like pink swiss cheese: bubbles of white triglycerides within the normal pink liver tissue!

Secondly, today’s Dr. Mercola’s article speaks of soda’s being bad for the liver because of the amount of fructose they contain. HFCS is rather controversial but bottom line we consume too much. Apparently the liver can only handle so much fructose per day, less than the amount in just one soda!

In my studies it occurred to me that the human body does not have an enzyme to break down fructose like it does other sugars. The human body turns fructose into triglycerides! It never occurred to me a “fatty liver” really means “a triglyceride-laden-liver”!!!

I am sure there is more to it, but I am going to try to get liquid fructose (not fruit) out of my diet…

Adrienne, you may have just saved my life!

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