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From Our Readers – Q&A Session 10-01-08

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Hypermobility and Ehlers Danlos?

Q: I've been diagnosed with hypermobility syndrome/fibromyalgia. I've been tested for Ehlers Danlos – #4 and #6, each were negative… If you are hypermobile do you necessarily have EDS? What do you think of prolotherapy as a treatment for hypermobile joints? Is it safe? Is it still under research? Is any medical group endorsing it? – Judy

A: You can definitely have joint hypermobility without having Ehlers Danlos syndrome. It is estimated that 10% to 15% of people have hypermobile joints as children (e.g., ability to bend thumb back to touch wrist), but many improve as they reach adulthood. Various studies have indicated hypermobility may be two to three times as frequent among those with ME/CFS and Fibromyalgia.

Ehlers-Danlos syndrome, on the other hand, is a relatively rare disorder affecting only about one in 5,000 people. EDS is an hereditary connective tissue disorder characterized by defects in collagen – the tough, fibrous protein in connective tissue that helps support the skin, muscles, ligaments and organs of the body. (See info at MayoClinic.com.)

Prolotherapy is a treatment that injects a dextrose (sugar water) solution into the ligament or tendon where it attaches to the bone. The theory is that this causes a localized inflammation in these weak areas, which then increases the blood supply and flow of nutrients and stimulates the tissue to form new ligament tissue in areas where it has become weak. It is used for many different types of musculoskeletal pain, including arthritis, back pain, neck pain, fibromyalgia, sports injuries, unresolved whiplash injuries, carpal tunnel syndrome, chronic tendonitis, partially torn tendons, ligaments and cartilage, degenerated or herniated discs, TMJ and sciatica.

While no treatment is without risk, the risks from prolotherapy appear to be minimal when the treatment is administered by a doctor who is an experienced prolotherapy practitioner. Many physicians remain skeptical about the benefits of prolotherapy, largely because research has been limited. Although there have been several observational research projects, there have been only five placebo-controlled, randomized, double-blind trials of prolotherapy. However, four of the five found positive effects. We were not able to find any major medical group or organization that endorses it, largely due to the lack of substantial research.


Help For Prescription Costs?

Q: Our daughter, who has no health insurance, must pay quite a bit for her medicine. Any help? – Fred
A: A lot depends on her income. The best place to start is the Partnership for Prescription Assistance (https://www.pparx.org/). There she can enter her basic information and they will give her a list of all the programs for free or reduced medications that she may qualify for. They also provide the necessary forms and links needed to apply for the various programs.

Another site that may be helpful, if she qualifies as low income, is NeedyMeds.org (http://www.needymeds.org/).

If she does not qualify for any of the above programs, one of our readers recently shared this suggestion that may help: “I have no insurance and have been using this card for several years. I have saved a lot of money with it. Go to [this site]. It has all of the information you will need, including phone number if you have more questions – (http://www.prescription-savings.com/moreInfo.asp).


Hypothyroidism Help?

Q: It took me over 25 years to get a diagnosis of hypothyroidism. Each time, they only took the TSH test, and kept telling me I was "on the low side of normal"! Yet, I was losing my eyebrows, was tired often, my nails are heavily ridged and break easily, so I have to keep them cut short. My skin is so dry it hurts. My pulse, BP and temperature are consistently low, even though I am over 70 and overweight! …I want to see an Endocrinologist.

But my current doc keeps refusing to refer me, and I can't be seen by a specialist without a referral! And he still only does the TSH test. Now, I have zero eyebrows, and am going bald. I don't think I am receiving the correct dosage, but my doc keeps patronizing me. Why do I stick with him? He's the best of a bad lot in this town. At least, he will keep renewing my prescriptions… OK, suppose I try to give up on some of my medications; where can I start, and how do I afford it? …I want some more answers! – Penny

A: You are right – just doing the TSH (hyroid stimulating hormone) test will not tell you all you need to know about how your thyroid is functioning or which medication you need. Ideally you need to find a doctor who will give you the tests you ask for and will refer you to a specialist when needed. (Your insurance company may be rewarding doctors for not ordering too many tests and/or keeping referrals low.) We know that's easier said than done, though.

When it comes to thyroid disease, the best resource we can refer you to is patient expert, advocate and educator Mary Shomon. You can find a wealth of information on her Web site – thyroid-info.com (http://www.thyroid-info.com), and she has written several books on thyroid disease.

Through her site, you can also order your own thyroid blood tests. (Of course, you'll probably have to pay for them yourself as most insurance companies will not pay for lab work not ordered by a physician.) You can also book a phone consultation with Mary. Her rates run from $25 for 15 minutes to $100 for an hour. It may be worth the money to spend 15 minutes getting her advice on how to talk with your doctor and/or how to find a new doctor who will work with you.

Also, the National Endocrine and Metabolic Disease Information Service has just published several new fact sheets about thyroid diseases. There are links to some endocrine and thyroid organizations that may be helpful. You can find the Hypothyroidism Fact Sheet at: http://www.endocrine.niddk.nih.gov/pubs/Hypothyroidism/


Phospholipid Antibody Syndrome/FM and ME/CFS?

Q: Are you finding that ME/CFS patients and FM patients are being diagnosed with Phospholipid Antibody Syndrome (AKA Hughes Syndrome or "sticky blood") more frequently than in the past? Are you finding more incidences of skin cancers in ME/CFS and/or FM patients? – Pat

A: We found a few studies, from around 1997 to 2003, based on the theory that ME/CFS and/or FM were types of Phospholipid Antibody syndrome – a blood coagulation disorder. However, since we haven't been able to find anything more recent, we're surmising that the theory has been abandoned.

We're also not aware of an increased incidence of skin cancer in ME/CFS and/or FM patients. Since there seems to be a general increase in skin cancer though, it may seem like more ME/CFS and FM patients are being diagnosed with it.


Cymbalta Side Effect?

Q: I have experienced myself where my head shakes. Not noticeable to me, but to others. I have checked for Parkinson's and a few other problems, but have not come up with an answer to why. I take Cymbalta for my fibromyalgia. Could this be a side effect? – Marilyn

A: Tremor is listed as one of the common reactions to Cymbalta, so it's possible your head shaking could be a side effect. However, talk with your doctor about it to make sure it's nothing more serious. And if you’re wondering about possible interactions between the drugs and supplements you take, check out our list of “Online Resources for Checking Drug & Supplement Interactions.”


White Lumps in Jaws?

Q: My brother and I have hard large white lumps inside our bottom jaws. We are in our 60's. We were wondering what they are and is there anything to worry about? How are they removed? How can I stop them from growing? – Maggie

A: What you describe sounds like tori, bony elevations in your mouth that usually appear in the premolar area. Tori are benign and generally do not interfere with eating, speaking or swallowing. They can, however, interfere with the application of dentures and would have to be removed. Tori seem to be hereditary and only appear in adulthood. They can continue to grow throughout life. Tori do not require treatment unless they becomes large enough to interfere with denture placement or mouth functions. In that case, treatment usually consists of chiseling off the lesions. Although what you describe are probably tori, it would be wise to check with your dentist just to make sure they are nothing more serious.


Weight Gain With Livial?

Q: I had a complete hysterectomy two years ago and I am on Livial hormone replacement therapy. Will this cause me to put on weight? I feel that I am having difficulty keeping my weight down. – Francesca

A: Yes, unfortunately weight gain is one of the possible side effects of Livial (generic name tibolone). For our American readers who may be wondering, Livial is not available in the U.S.


Barometric Pressure and Sinuses?

Q: Do you think the problems people with FM have with barometric pressure could be caused by clogged sinuses and that the barometric pressure swells the fluid levels in the sinuses? I usually get a lot of headaches when rain is imminent, also more muscle pain and fatigue. Is there any way to fight this during rainy weeks? Do you think Guaifenesin is a good treatment during these times? – Marion

A: There is no doubt that changes in air pressure, whether caused by the weather or by flying in an airplane, can cause sinus pain. If your sinuses are stopped up, air can become trapped in them. When the barometric pressure drops suddenly, as it usually does before a storm, the difference between the higher-pressure air trapped inside and the lower pressure outside causes an outward pressure, which can cause pain.

It's also true that most people with fibromyalgia report experiencing more pain when the weather changes, as do people with migraines and arthritis. While it is likely that the change in barometric pressure is also responsible for the increased pain with these illnesses, there is little research on the subject.

We wish we knew of a way to counteract the effects of these changes in air pressure, but short of living in a hyperbaric chamber, we haven't heard of anything. If anyone has found something that helps, we would welcome your suggestions.

Guaifenesin is an expectorant and is primarily used to loosen congestion in the chest and throat. There is no mention of it helping to relieve sinus pressure. However, since guaifenesin is a relatively safe and inexpensive compound, you might want to try it. Unless you are allergic to it, there are only minimal potential side effects.


Getting Back on Message Board?

Q: I need to find out how to get on the Message Board for fibromyalgia and the one for depression. I was on one years ago … and they keep writing, “your name is already on file,” then ask for my user name and password. I don't know. I want to register with my new…e-mail. How can I do this? Please help. – Marcia

A: Since you wish to register using a new e-mail account, you should contact tech support directly – techsupport@prohealth.com – and tell them what you need. For others who've simply forgotten their password, go to LOG IN/REGISTER (upper right corner of message board screen) , and click on Forgot Password? It will be sent to you by e-mail.


How To Describe My Fatigue?

Q: How can I explain the extreme fatigue I feel to my friends and family in a way they can understand?

A: One favorite explanation that has been shared for years on the ProHealth message boards and many others is “The Spoon Theory.” Though it is usually posted without attribution, it was written in 2003 by Christine Miserandino. To read and print out a pdf of this memorable explanation with Christine’s byline, click here.


Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “From Our Readers – Q&A Session 10-01-08”

  1. sick~kitty says:

    A short explanation is that I have 1 days’ worth of energy that I have to make last a week, as long as everything is going just right. If any little thing gets off-kilter, then I don’t have even that much energy. I’m very tired of trying to balance it all.

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