From Our Readers: Comments & Suggestions – 9/24/13

Inaccurate Premise Leads to Doubtful Conclusion

Re: “Personality does not distinguish people with fibromyalgia but identifies subgroups of patients”

The days when introverts were considered neurotic are rapidly becoming an antiquity confined to a few halls of academia. A proposal to include introversion as a psychiatric disorder in the DSM 5 was soundly defeated for example. And many research studies back up the positive aspects of introversion. This study may be a classic example of when you start with an inaccurate premise it puts the conclusions in doubt.  – KL


Not All FM Patients Are Sensitive to Cold

Re: “Thermoregulation and Pain Modulation in Fibromyalgia”

" As a result, the musculoskeletal hyperalgesia associated with conditions such as FM may result from referred pain in the adjacent muscle and skin." For me, I require a plausible explanation of the suggesttion of referred pain. Many people with FM do not worsen with the cold and some people with FM are quite intolerant of higher temperatures found in the semi and tropical countries. Also we have found that some people with FM cannot tolerate thermal pools used for arthritic paliative treatments. Overall I am doubtful of this hypothesis as a significant factor in FM. – IH


I, too, have doubts about this study. I think the premise upon which the study is based – that FM "is characterized by widespread pain that is exacerbated by cold…but relieved by warmth" – is flawed. While most FM patients do seem to be sensitive to cold, some (like myself) feel best when it is cold and are hyper-sensitive to heat. Therefore, this hypothesis is not applicable to all FM patients. – KK


Appreciating One Doctor's Candidness

Re: “A Doctor's Letter to Patients with a Chronic Disease”

Thank you for caring. Thank you for allowing yourself to be vulnerable and expressing your own perspective. This information is invaluable. – M


Having a son-in-law in England who is a GP has gone a long way to help me understand the trials and joys of being a doctor. I'm glad I knew enough that when my primary care doctor dealt with my fibromyalgia diagnosis by continually asking what I thought we should do next (I was sorta counting on her and that whole "years in school" thing you guys do for some answers) that I moved on and have found a new doctor. She's very supportive, will answer any and all questions and will get a specialist involved if needed. It's been a great relationship. Thanks for giving your view of the job. – E


Are you sure you're not my Rheumatologist?  We've actually had this discussion. I have multiple chronic illnesses and few of them seem to respond well to treatment. We've talked about my knowledge of my illnesses and how it exceeds his. We've talked about how doctors expect to be able to fix things and how I seem to be unfixable. We talked about his frustration at not being able to give me the relief he would like to see me get. You have brought up some very important points to help make this relationship work and work well.

As patients it's never good to outsmart a new Doc on the first visit. I'd suggest that with a few exceptions, you need to have a few visits before you can let on that you know more than most. Respect goes a long way in all kinds of situations, this is no different…

Don't put up with Jerks is awesome advice. I did for many years thinking Docs could do no wrong and I had no choice. I have since learned that Docs are human, fallible and have bad days, too, but there is no need to put up with rudeness ever…As I have become older and wiser I have learned as you put it "…we are normal, fallible people who happen to doctor for a job. We are not special." Well I disagree with the last part. I do think you are special as even though "you" don't have any answers none of the Docs who make up my team have ever suggested I am a lost cause even though there are no answers. – BT


I want to thank you so much for admitting that while you treat us, you don't understand the disease we have because you don't have it. I know we scare doctors, I know I terrify doctors as I have 3 auto-immune diseases and know all of them well. I am lucky as my doctors are great…They all listen to me and I listen them and we have mutual respect and my team of doctors work well together which is always a bonus.

It's just nice to hear a doctor say that someone with a chronic condition scares them and why…We really need more doctor's like you who can tell a patient you know this disease better than me as you have lived with it and know when the disease is acting up. – SL


How to Get Full Text of Studies?

Q: Please tell me where I can get the original studies you cite in your abstracts on specific health concerns, ie. Variable Heart Rate studies in CF, Fibro, and control groups.  I have relied on these studies from you in the past and am quite dismayed to see that they have been so drastically simplified. An abstract is not what  I am after. Looking forward to hearing from you on this, and ever so appreciative of all you do for patients. – S

Editor: I understand your frustration because an abstract only hits the highlights of a study. The problem is that there is a fee for the full text of most studies. If there is a free text of the study available, we always note that and provide a link to it above the abstract. You might try sending an e-mail to the corresponding author of the study telling him/her why you're interested in their study and ask them to send you a copy of the full text. I can't promise you they will do it, but often they will. (Please remember that the journal article is copyrighted and can't be copied and shared online.)

In order to find the corresponding author, click on the link to the journal at the bottom of the abstract posted on ProHealth. In the case of the Variable Heart Rate study you referred to, the journal is Seminars in Arthritis & Rheumatism. Next to the name of the first author, you'll see a tiny picture of an envelope. If you click on that envelope, it will open a blank e-mail with the author's address already filled in.

Good luck! I hope you're able to get a copy of the journal article. – KLR

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