Noreen

bella- {{prayers for your therapist, hugs for you, and healing energy for you both}} Noreen

You got that right, Maxine. Oftentimes, the things we regret the most are those where we didn't listen to our gut feelings/instinct. One of the most valuable things about this forum is that it validates our instincts that something is not right and helps us gather the courage to deal with those with 'titles' . Interesting that we are right back to the answer of the question - both.

Thanks Cat - I had checked in late january and saw nothing. I appreciate your sending the link. Noreen

Thanks, Maxine

I thought I had the article I read which stated that EDS accounts for spondylosing spondylothesis but I could not find it. That dx was the reason I needed spinal fusion - L-4L-5 and s-1 kept going out of joint - not fun. I did finally find out what my 'knee marble' was through my EDS research. It is called a spheroid a buckshot sized encapsulated fat tissue - the radiologist, the rheumy, and my PCP did not have a clue what is was. It didn't hurt just rolled around within my knee - grosssed out some people. I can still touch the floor flat with my left hand even with the fusion. What is the advantage of going to a geneticist and how does one do that? My dx at my original rheumy appt in 97 or 98 was Benign Joint Hypermobility Syndrome 9 out of 9 on the Beighton (?). Skinny? - I'd never fit - "Patient presents as a well nourished female...." Dlo you have a link for the NIH EDS study?

Yes, but would he be willing to go? It can be a safe place for both of you to express yourselves and feel like you are being heard. A good therapist should be able to give you tools to use, such as a code word for when you are totally wiped out. It's a lot easier to say 'Marshmallow' for instance than three paragraphs trying to explain which six symptoms have you down now. Obviously, that's just an example but you get the drift, I hope. The therapist should be able to help you celebrate the things you can do together and work with you so he doesn't feel he has to give up everything because you can no longer do something.

Firewatcher- I understand where you are coming from - essentially you are interviewing a colleague to see if you want to work with them. After all, you are the source of my life saving mantra - "I am a bland potato." I don't know if it still the case but psychiatrists used to be compelled to go through therapy for years as part of their training. You must have trust, you must have respect, and a therapist doesn't have the credentials to diagnose medical conditions. {hugs} Noreen

Maxine- I totally understand having trust issues after something like that - it is a violation - a type of rape, if you will. That is why I said report her to the licensing board and the State Nursing Association. It is not too late to write a letter and might even be cathartic for you especially in light of the fact that she has further abused patient trust by doing this to someone else. I wouldn't thought a complaint to the employer would get you far - even though it should. Ethics are a big issue these days. You mentioned the practice is associated with a hospital - depending on how you feel you could always CC the Joint Commission on Accreditation for them to keep in their file for the next visit. What the heck - she deserves some discomfort in her life. Noreen

Noreen- Just wanted to add that my son's ped (Peter Rowe) was among the first to make the correlation between autonomic dysfunction and CFS here in the US in the early 90's. The correlation is undeniable and has subsequently vastly improved CFS treatment. Julie Julie- Your son is fortunate to have Dr. Rowe as his physician but even more so to have you as his mom. {hugs} Noreen

Summer- sorry about that. Yes, the conclusions are the same - percentages vary slightly. If I can determine what I did wrong, I will correct the link. Noreen from my history page, here's the CFS link http://www.meresearch.org.uk/research/proj.../autonomic.html

Hi Julie-] I was following it in the science research blogosphere. By bad science I meant the question of some of their methodology and testing - they've gone back to very old testing techniques which are considered less than reliable by do many scientists on the ground (i.e. the lab) as the newer ones (DNA< RNA< YADA<YADA) weren't yielding the desired results. One of the authors of the 2nd paper did not want to go so public as she thought it was premature - her science methodology has been praised, however. My shorthand version was that it was not ready for prime time and you are right - r phrasing would have said early science. Perhaps they will get somewhere, perhaps they won't - that is the nature of science and experimentation. As long as false hope is not being dished out, I do not have a problem with scientific research. I also don't have a problem with Canada being proactive and possibly erring on the side of caution for sake of the health of the people of the country. It irks me that we do not fund research cleanly anymore. Scientists use to be able to work at an academic institution and do research. Now, there is no tenure and everyone better bring in a grant if they want to keep a job. The problem with this is that you answer the question asked - if the grantors are giving you $ for AIDS (e.g.), that is what you focus on. So, somehow an AIDS center will have an autonomic lab yet not link into other autonomic disorders through a search - they are being paid for AIDS. AIDS, by the way, is now considered a chronic disease in public health. Thanks for the Wall Street Journal article, I hadn't seen it. Noreen

Hi Melanie- Since this is all new to you, a couple quick ways to adapt your environment might help you. Step stools are wonderful to keep you from bending all the way down - if you put the laundry basket on one it stops you from bending over that last six inches. When you brush your teeth, put one foot on a step stool - this helps keep some of the blood flowing and helps you to remember to contract your leg muscles. If your children are young enough to pick up, whenever you are out and about, pick up old fashioned small wooden children's desk chairs. These will work for the children and for you - I still use my son's! Hydrate, hydrate, hydrate - it has been shown that a faint can be put off by chugging a bottle of water. You have to make sure you are drinking a gallon a day and getting your salt and electrolytes. I naturally used the squat as a preventative and probably put off getting diagnosised. You might actually have to work on your technique - strange as that might sound. Don't bend your head forward as you bend your legs - keep your back straight as you go down. If that doesn;t ring true or make sense to you ignore it. Remember to conserve some energy for yourself. Post any more questions or concerns, this group is great and always willing to try and help. Best of luck, Noreen

Autonomic Dysfunction in Fibromyalgia Assessed by the Composite Autonomic Symptoms Scale (COMPASS) ? Source: Journal of Clinical Rheumatology, Mar 31, 2009 by Carla Solana, MD, et al. April 9, 2009 [Note: The COMPASS questionnaire, developed by Mayo Clinic neurologists, includes 169 items covering different aspects of autonomic symptoms (problems with regulation of unconscious body functions such as heart rate, blood pressure, etc.). Responses are weighted to produce a composite score.] Background: It has been suggested that autonomic nervous system dysfunction may explain all of fibromyalgia (FM) multisystem features. Such proposal is based mostly on the results of diverse heart rate variability analyses. The Composite Autonomic Symptom Scale (COMPASS) is a different validated method to recognize dysautonomia. Objectives: ? The main objective of our study was to investigate symptoms of autonomic dysfunction in FM patients by means of COMPASS. ? A secondary objective was to define whether there is a correlation between COMPASS and Fibromyalgia Impact Questionnaire (FIQ) scores in FM patients. Methods: Design, analytical cross-sectional study. Our study population included 3 different groups of women: ? 30 patients with FM, ? 30 patients with rheumatoid arthritis, ? And 30 women who considered themselves healthy. All participants filled out COMPASS and FIQ questionnaires. Results: ? FM patients had significantly higher values in all COMPASS domains. COMPASS total score (54.6 +/- 20.9; mean +/- standard deviation) clearly differentiated FM patients from the other 2 groups (21.6 +/- 16.5 and 9.5 +/- 10.2, respectively). P < 0.0001. [Probability that score resulted by chance less than one in 10,000.] ? The majority of FM patients gave affirmative answers to questions related to orthostatic, digestive, sleep, sudomotor [sweat gland stimulation], or mucosal dysfunction. There was a significant correlation between COMPASS and FIQ scores (Spearman r = 0.5, P < 0.005). Conclusions: ? Patients with FM have multiple nonpain symptoms related to different expressions of autonomic dysfunction. ? There is a correlation between a questionnaire that measures FM severity (FIQ) and an autonomic dysfunction questionnaire (COMPASS). ? Such correlation suggests that autonomic dysfunction is inherent to FM. Source: Journal of Clinical Rheumatology, Mar 31, 2009. 15(2), PMID: 19342959, by Solano C, Martinez A, Becerril L, Vargas A, Figueroa J, Navarro C, Ramos-Remus C, Martinez-Lavin M. National Institute of Cardiology, Mexico City, Mexico; National Institute of Respiratory Diseases, Mexico City, Mexico; Hospital General Regional 45, Guadalajara, Mexico. FOR CFS info here's the URL - Autonomic dysfunction in CFS

Post and let us know how you make out with your purchase - e.g. sizing, etc. More and more of us will be looking for this as the months roll on. Tks, Noreen

thankful- Your experience is extremely helpful. thank you. 2 questions- Do you get a lot of humidity where you live and, if so, does that usually bother you or not so much as long as you have the Coolvest? Does your insurance usually cover Durable Medical Equipment? I'm looking to get a script for one when I go to my new neuro at the end of May and my insurance covers durable med - I need to save $ for all the other medical costs not covered. One thing I've used that has helped is a device called Artic Mist ( trademark) - a bottle filled with water and ice is in a neoprene bag around your waist like a waistpak - the botttle has a pump on it to create pressure and a tube running from it that will spray a fine ice mist on you or in front of you reducing the temperature around you by 10 degrees - extremely handy to have for moms at ball games and the like. I got it years ago at JC Penney for less than $25. Noreen

Noreen, I'm glad you posted that. I have not really looked into the research that led to this decision yet, but I'm planning to. Canada definitely wants to err on the side of caution because of serious errors in the past involving contaminated blood products. So, perhaps this really isn't a good indicator that the link is strong between XMRV and CFS. They just don't want to take the chance of having another tainted blood scandle like they did in the 80's/90's. Thanks for pointing that out. Summer Summer- While the reason may not yet be found, raising awareness is good especially if the dysautonomia component is focused on. I had been active in FMS support on the net since 1994 and a facilitator for twelve years of my local fibro/chronic pain group. When a rheumy specializing in fibro was moving his practice to upstate NY from NJ ten years ago he called me and we chatted. As he caught me in the evening after work, I was blunt and told him I thought that fibro was actually an autonomic problem. He agreed and said that he thought rheumatologists got it by default since neurologists weren't interested. He moved his practice, was a great guest speaker, became very active in the arthritis chapter and has helped many. I never saw him as a patient as by then I was dealing with much more than just FMS. I really don't think it is too much to ask that all licensed medical professionals have a clear understanding of a vital component of human physiology - but it would seem that that is the current state of affairs given all of our posts here. Noreen

Maxine- I somehow missed this post. Perhaps I have a bit of cognitive impairment - lol. That behavior is unconscionable as well as unethical - I hope you reported her to her professional organization. Like anyone would choose disability! - I still can't accept that I can't even type a post without problems and I have been typing since I took my mother's personal typing course in 5th grade (she taught high school) and have anxiety attacks due to not being able to spell -(part of my visual thinking - I have to see the word spelled correctly and I'm over 50 so I learned to spell everything correctly). TTF - Thank The Forum - for teaching me what anxiety attacks were enough so I could recognize what was happening, associate the occurrence with hyration/meds and help reduce them, and locate my brain instead of beating up on myself for not being able to do something so simple. Noreen

You are right about that Julie. But just think, like so much else, it is dependant on which dx the MD puts on our chart. I've met all the diagnostic criteria for CFS for at least 12 years but do not carry the diagnosis.

' It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers.

Oh Angela you poor dear {{hugs}}- How absolutely horrid for you. I had to set an ankle brace after coughing and setting up a brief valsalva manuever (sorry for misspelling -I went out to dinner for my son's b'day and my IQ drops if I am vertical for too long). Are you coughing when these incidents occur or do they hit out of nowhere? For me, while I was not recognizing what happened as a cough induced syncope, I got paranoid enough that if I felt even a hint of a cough I leaned against a wall and bent over - holding onto something if I could - before I coughed. It helped. My goodness, I truly hope you don't hurt yourself any more than you already have - you already know how dangerous it is and we all share in your anxiety over not having control. (I swear by Arnica ointment for bruises and hard knocks from falls) Here's hoping you heal well and completely - Noreen

Kayjay- Remember the first poster is being treated by a Doctor of Osteopathy - she is probably in fact undergoing osteopathic manipulation. There is a long tradition of osteopathic medicine and any graduate earning a D.O. is eligible to be licensed by any state and prescribe meds and tests just as any MD would. If your doctor does not believe in Cranial Sacral Manipulation as taught thru the Upledger Institute that is his perogative - it has, however, helped many and is a non-invasive method of treating pain without side effects. I could not tolerate massage then and even less so now. Noreen

Maxine- Wonderful post. Quick question -do insurance companies idjits fall into the troll category or do we reserve a special cretin category for them? Any dealings with the worker's comp and/or disability system could seriously land you in need of therapy - if you have the energy to go. Noreen

I had cranial sacral therapy for a while about 10 yrs ago performed by a massage therapist. I remember being without hip pain for an afternoon for the first time in 8 to 10 yrs. Could not continue due to cost. IMHO, you are fortunate to have a DO who is actually practicing osteopathy. If the treatment is not adding to stressors - money, time, etc. I would continue. DO's have so much work that they are not apt to keep a patient coming back unless it is needed. My neurosurgeon's original medical degree is in osteopathy and I think it helps him to "get me" - the whole EDS hypermobility thing, etc. Of course, the treatments are not a magic wand. The exercise and all the rest still is up to us.

Just goes with the whole Cognitive issues - check box. I hope I feel like I have a brain cell by the time my BP monitor arrives.

Thanks, I plan to ask my new neuro for a script for one when I see him at the end of May.