HELP prior to Dr. visit - need articles on PEM, sensitivity, heart danger, AVs

[creekfeet]

Hi all;

I'm seeing a new doctor Friday and asked my sister to help me in case I'm too brainfoggy that day to cover all my bases. Hoped she'd jump in and do some research on her own but instead she asked me to link her some articles that were pertinent. Now I'm so foggy I can't find anything.

Can you help? I need research links, talks, whatever.

I started her on thefreeprisoner's transcription of Dr. Bell's talk as that has a good overview.

What I need now:

Something about post-exertional malaise, and how exercise doesn't improve but worsens our symptoms.

Something about drug sensitivity in ME/CFS patients, where we should have low doses.

Something on the danger of heart problems in ME/CFS patients. (I want to get some action re: my chest pains, no more mere stethoscopes and dismissals!)

Something on the (at least partial) success some people have had with antivirals, if only to treat secondary infections.

It will be a huge help to me if anyone can link some pertinent pieces of literature, for me to pass along. My sister can be a fierce and fabulous medical advocate but only if she's well-convinced.

thanks,
Creek

ps: please move this thread if I've created it in the wrong forum, thanks!

 

[_Kim_]

Hi creeky,

I moved your thread to Dr. Visit. Hopefully, you can continue this thread and tell us how things go along the way. I've given you an early promotion to the Library. This should help you access some articles.

Here is one that I think you need:

A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Frank N.M. Twisk and Michael Maes.

Hugs,
Kim

 

[Lesley]

Here are some good articles on post-exertional malaise:

An article describing differences in recovery after exercise tests: http://www.cfids.org/cfidslink/2010/020302.asp

The article mentions the Canadian definition, which requires post-exertional malaise and describes it in detail: http://www.cfids-cab.org/MESA/me_overview.pdf (I really like this whole document. It mentions sensitivity to meds on page 12.)

Blood bio-markers study: http://www.cfids.org/cfidslink/2009/080503.asp There is an amazing bar graph illustrating the results of this study in the slides of the last CAA webinar. I believe they are slides 26 and 27 (look for bar graphs near the end). http://www.cfids.org/webinar/xmrv-slides-jan2010.pdf

Good luck!

 

[_Kim_]

Exercise
Light 2009 - Moderate Exercise Increases Expression in CFS Patients

Viral Infections
Nicolson 2009 Part 1 - Role of Chronic Bacterial and Viral Infections in Neurodegener

Nicolson 2009/10 Part 2 - Role of Chronic Bacterial and Viral Infections in

Heart
Miwa 2009 - Cardiovascular dysfunction with low cardiac output due to a small heart..

Newton 2009 - Lower Ambulatory Blood Pressure in Chronic Fatigue Syndrome

The Heart of the Matter: CFS & Cardiac Issues

Drug sensitivities
Stein 2005 - Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines...

 

[creekfeet]

I LOVE YOU ALL!

And yes, I'll keep you posted.

I'm getting that whooshing noise in my head now, but before I tired out I got a good start in the library, and first thing tomorrow I will dig into these links.

Oh, and did I mention that I love you?

 

[_Kim_]

I'm so glad that this was helpful. Our little Library is very new, so if you still feel like you need references for certain topics after you look around there, let us know.

And cheers to your sister for being a fierce medical advocate for you and your girls.

Keep us posted.

(((((love you too)))))

 

[creekfeet]

Yeah, well... it turns out my sister doesn't have time to read the articles before my appointment. Grr. But perhaps she'll get around to it eventually, and meanwhile they'll help me arm myself, however slowly I might get through them.

 

[creekfeet]

Thanks again, all! I'm exhausted after the appointment, but here's a quick rundown:

My sister was a huge help. She drove me (50 winding mountain miles each way), managed to read the Dr. Bell transcript before the appointment, helped me remember things during the appointment and took fabulous, thorough notes of all that was said, with points that the doctor would follow up on and points I should follow up on noted.

My dream that somehow this doc would turn out to be super savvy on ME/CFS was dashed---seems he has had only one patient with CFS. However, he had read up on literature for that other patient, and promised me he'll recheck the question about whether antivirals might be good to try, so that's good. Seems like he'll be pretty conservative about it though: if it's not the recommended treatment, he isn't going to try it.

What he did recommend was Celexa, which doesn't please me much since I don't have much in the way of mood symptoms and feel a strong instinct that it's the opportunistic secondary infections we should go after and that clearing up any spare viruses in my system would be a huge help. I said I'd research and consider the Celexa, though, so if anyone has input on that it will be great to hear.

He was aware of ME/CFS patient sensitivity to drugs and need for low doses, so that's a good sign, especially if I do decide to try the Celexa. He thinks it less likely to cause the paradoxical reaction of jitters that I got with Nortriptyline and Gabapentin.

Best thing: I'm very relieved to say he will either order heart tests for me himself or refer me to a cardiologist who will have more access to tests. He thinks EKG, 7-day Holter Monitor and nuclear stress test.

Unfortunately he confirmed my fear that my MediCal (poor folks') insurance will not be accepted in Nevada, so I can't go up to Reno for tests.

He warned me against overuse of ibuprofen or naproxen, especially since they're not doing all that much for me, and wants me to try 750 mg salsalate or even plain Aspirin. Since analgesics only take the worst edge off my pain anyhow, I'm fine with the idea of using whatever is least likely to cause damage.

He suggested I might try a pain cream with capsaice, or even Tiger Balm, for some more pain relief.

Overall impression: he's a good listener, speaks to me as to an intelligent equal, doesn't shy away from using medical terms and will explain them clearly if necessary, and promises research and follow-up. He can't provide an ME/CFS specialist's knowledge and experience but as a primary doctor I think he may probably be good to work with.

Any and all thoughts, responses, reactions and suggestions are welcome! Thanks, dears.

~ Creek

 

[JT1024]

Thanks again, all! I'm exhausted after the appointment, but here's a quick rundown:

My sister was a huge help. She drove me (50 winding mountain miles each way), managed to read the Dr. Bell transcript before the appointment, helped me remember things during the appointment and took fabulous, thorough notes of all that was said, with points that the doctor would follow up on and points I should follow up on noted.

My dream that somehow this doc would turn out to be super savvy on ME/CFS was dashed---seems he has had only one patient with CFS. However, he had read up on literature for that other patient, and promised me he'll recheck the question about whether antivirals might be good to try, so that's good. Seems like he'll be pretty conservative about it though: if it's not the recommended treatment, he isn't going to try it.

What he did recommend was Celexa, which doesn't please me much since I don't have much in the way of mood symptoms and feel a strong instinct that it's the opportunistic secondary infections we should go after and that clearing up any spare viruses in my system would be a huge help. I said I'd research and consider the Celexa, though, so if anyone has input on that it will be great to hear.

He was aware of ME/CFS patient sensitivity to drugs and need for low doses, so that's a good sign, especially if I do decide to try the Celexa. He thinks it less likely to cause the paradoxical reaction of jitters that I got with Nortriptyline and Gabapentin.

Best thing: I'm very relieved to say he will either order heart tests for me himself or refer me to a cardiologist who will have more access to tests. He thinks EKG, 7-day Holter Monitor and nuclear stress test.

Unfortunately he confirmed my fear that my MediCal (poor folks') insurance will not be accepted in Nevada, so I can't go up to Reno for tests.

He warned me against overuse of ibuprofen or naproxen, especially since they're not doing all that much for me, and wants me to try 750 mg salsalate or even plain Aspirin. Since analgesics only take the worst edge off my pain anyhow, I'm fine with the idea of using whatever is least likely to cause damage.

He suggested I might try a pain cream with capsaice, or even Tiger Balm, for some more pain relief.

Overall impression: he's a good listener, speaks to me as to an intelligent equal, doesn't shy away from using medical terms and will explain them clearly if necessary, and promises research and follow-up. He can't provide an ME/CFS specialist's knowledge and experience but as a primary doctor I think he may probably be good to work with.

Any and all thoughts, responses, reactions and suggestions are welcome! Thanks, dears.

~ Creek

I'm thrilled you had an advocate with you since I've always done it for myself. I also thrilled at the support you've received from other members on this site.

I'm fairly new to the site, I'm still feeling my way around and discovering things but I've managed to step on toes inadvertently.

You mention the heart monitor and I am SO GLAD the doctor listened to you. I also have had a primary dx of fibromyalgia with a secondary of CFS. Until recently, I had never had concern for my heart but I've reached the wonderful age where women go through "peri-menopause". To be honest, I'm freezing cold one minute, overheating the next. The heart issues I've kind of neglected because I don't want to be a "whiner"

The sad part is that I work in healthcare and I have access to many things. Unlike many on this site, I still work full time. I'm not doing well but I'm barely getting by. Several time recently, I felt I was having either a heart attack or heart palpitations. I recently purchase low dose aspirin to have by my bed and in my pocketbook in case I feel I'm having a heart attack again.

The Holter monitor should pick up if there are abnormalities. I'm embarassed to say that while I work full time in a hospital, I have not been very aggressive taking care of my own health. Knowing that "sick" employees cost companies money, I'm well aware that being "sick" in this economy is not good. I considered using FLMA but the organization I currently work for is not particularly "caring" of its employees even though it is a healthcare provider. In fact it has been a hostile work environment for a long time and management elects not to do anything about it.

Sorry to hear about your insurance coverage. I suspect many of us will encounter similar situations since insurance does NOT want to pay for anything it can get out of.

I'm not familiar with Celexa but am aware that many anti-depressant, anti-convulsant drugs are used in FM/CFS.

I'm so glad you found this site. People are really nice.

I know I've made some major faux pas and I hope to learn and share from those here.

Welcome Creekfeet!

~ JT

 

[creekfeet]

Thanks, JT! I'm going to sleep now and probably can't type a coherent response, but I'm sorry you've had some trouble starting out here and hope the path will be smoother, and also hope your work/health situation will improve. Since you know you need to place a higher priority on your health I'm sure you'll find a way to do it!

Yes, so relieved I'll have the heart tests. I've tended to low blood pressure all my life, and now it's super low. Add palpitations and chest pains---doctor really took the chest pains more seriously when I said they're worsened by activity----and it's worrisome. Add confusion, disorientation, dizziness, vertigo, memory lapses, and the whole picture of a body and brain receiving insufficient blood flow from a heart that's compromised seems frighteningly possible.

Wow, was that coherent? I think maybe so! So yeah, off to bed I go, much comforted by the day's events.

Sweet dreams and so many thanks to all.

 

[Lily]

Hi creekfeet -
It seems like it was a worthwhile visit. Sounded like he was respectful and if you felt he was listening that is always a good sign and it feels good. I'm so glad your sister was able to go with you - That can be a tremendous help.

Try not to feel too bad about the offer of Celexa. There's some pretty solid evidence that prolonged reduced sleep and chronic pain can really deplete important neurotransmitters. And that not only can pain be lessened by replacing neurotransmitters, sleep can be improved some and keep you from actually feeling worse or advancing into depression. It's sort of automatic to feel insulted when those antidepressants are suggested but I have seen some relief when you can improve sleep and lessen pain.

I know you hoped he had more knowledge of CFS, but at least he wasn't completely unknowledgable. It's good that he will order cardiac testing/monitoring, yay!

About the salicylate - there are still precautions with that, really pretty much the same as the other anti-inflammatory anagesics, but since the others weren't working for you, it's worth a try. Some people just get better relief with different products even though they are so similar. You just never know what is going to work. Hope you can tolerate the salicylates ok and that they help.

When I was going through all that I finally tried a Cox 2 inhibitor, Bextra, that was so much more helpful with the crazy pain and especially costochrondritis. I had tried so many different anti-inflammatories. So with the combo of other meds it really did make a considerable difference - just enough relief that I could keep going on a day to day basis. Then they took if off the market, when it was linked to heart attack and stroke. I tried so many others, but they either had side-effects I couldn't tolerate or didn't help at all. That caused a definite backslide.

None of this is curative but it is a start on some good palliative care that can hopefully help you manage better on a day to day basis. This is just the beginning and hopefully enough to create some sort of "place holder", until better treatment comes along.

This fella may be open just enough to try some other testing and treatment, or at the very least be supportive and open to new information. I'm thankful that you have that bit of hope for now.

Warmest Regards

Lily

 

[creekfeet]

Thanks, Lily! I should mention I didn't feel offense at the offer of Celexa; it's just that having tried Nortriptyline and Gabapentin and Prozac, with varying ill effects, I'm leery of the psychiatric meds and want to tread carefully. But what you said about the salicylates applies here too, I'm sure: Some people just get better relief with different products. So I'll keep an open mind.

Anyone have experience with Celexa? I'll make a search for threads featuring it later.

Gratefully,
Creek

 

[creekfeet]

Thanks, Lily! I should mention I didn't feel offense at the offer of Celexa; it's just that having tried Nortriptyline and Gabapentin and Prozac, with varying ill effects, I'm leery of the psychiatric meds and want to tread carefully. But what you said about the salicylates applies here too, I'm sure: Some people just get better relief with different products. So I'll keep an open mind.

Anyone have experience with Celexa? I'll make a search for threads featuring it later.

Gratefully,
Creek

 

[nanciswell]

IF you can tolerate coenzyme q10 it is great for the heart.. It cured my mitral valve prolapse .... this before I have gotten sesnsitive to it .. now I have ordered idebenone which being another form may be alright..

Now I am taking canriitine and also treating my adrenals with hydrocortisol cream helps with the pain in my chest.. and severe fatigue.. and air hunger..

nanci

 

[creekfeet]

Thanks nanci. Oh, dear. I hadn't even begun to contemplate the possible treatments: just looking at diagnostics so far. So much to learn, so little brain.
Querulously,
Creek

 

[JT1024]

Thanks, Lily! I should mention I didn't feel offense at the offer of Celexa; it's just that having tried Nortriptyline and Gabapentin and Prozac, with varying ill effects, I'm leery of the psychiatric meds and want to tread carefully. But what you said about the salicylates applies here too, I'm sure: Some people just get better relief with different products. So I'll keep an open mind.

Anyone have experience with Celexa? I'll make a search for threads featuring it later.

Gratefully,
Creek

Hi Creek,

Check out this link to PatientsLikeMe info on Celexa. While it shows many patients take it for depression, it is also used for many other conditions. I hope the link works....it looks funny the way it is marked up while I'm writing!

http://www.patientslikeme.com/all/treatments/show/26-celexa

 

[nanciswell]

Adding on that epsom salts baths help alot with fatigue and chest pressure for me as well.. ... Either the magnesium which is essential for heart ... or else the sulfate which I am also very low in... having salicylate sensitivities goes along with lowered sulfate levels.

Some people do not need nor do well with the extra sulfate so be careful with it..

 

[creekfeet]

Hi Creek,

Check out this link to PatientsLikeMe info on Celexa. While it shows many patients take it for depression, it is also used for many other conditions. I hope the link works....it looks funny the way it is marked up while I'm writing!

http://www.patientslikeme.com/all/treatments/show/26-celexa

Thanks!
Looking at the link, the fact that the top three side effects reported are fatigue, brain fog and dizziness, I'm kinda leery, but will continue investigating. Trying to get to some reviews from PWC specifically.

Adding on that epsom salts baths help alot with fatigue and chest pressure for me as well.. ... Either the magnesium which is essential for heart ... or else the sulfate which I am also very low in... having salicylate sensitivities goes along with lowered sulfate levels.

Some people do not need nor do well with the extra sulfate so be careful with it..

Ah! I have been really enjoying bathing in epsom salts, but didn't realize there was a biochemical reason for that.

 

[creekfeet]

I tried several searches at Patients Like Me and couldn't determine which of the "other" diagnoses (not depression or anxiety, etc) were taking Citalopram (Celexa) for ME/CFS or FMS. Finally I found just one reference with Citalopram and Fibromyalgia:

At the current time I take (for the fibro): citalopram (antidepressant), vicodin 7.5/500 four times a day, flexeril PRN (usually lunch time and before bed), ambien for sleep, stool softner for IBS, nexium to keep my tummy happy, neurontin for nerve pain. Plus all the rest of the meds for the other conditions.

That's here: http://www.patientslikeme.com/forum/show/31245?post_id=669077#669077

Seems to me with all the drugs she is taking, the citalopram can't be doing her much good. :/

 

[Jerry S]

Thank you, creekfeet, for sharing this information. You're lucky to have such a great sister!

My experience with Celexa (citalopram) was that it provided me no benefit and greatly increased orthostatic hypotension. I felt ready to pass out frequently on standing and lost consciousness on one memorable (or unmemorable) occasion. This is a common side effect of anti-depressants. However, people have various responses.

I'm very sensitive to most prescription medications. I have done better generally, although not very well, without them and just taking supplements and OTC drugs.

Best wishes,
Jerry