From Our Readers - Comments & Suggestions 06-17-09
June 16, 2009
Community Action Partnerships – Help with Disability Paperwork & Much More
Search on Community Action Partnerships in [your state]. You should get a bunch of listings - one has a map where you can click on the name of the county you live in and it will tell you what office handles your area. I used to work for Community Action Partnerhip in my town, and I helped a lot of people fill out disability forms. I was a Service Coordinator at the time and I met with clients all day long - helping them and linking them with a variety of services.
Note: The National Association for Community Action Partnership is a national network of local Community Action Agencies - non-profit social service agencies who provide many helpful services to low income individuals and families in 96% of all U.S. counties. You can search by state & county at the Partnership’s website www.communityactionpartnership.com This will give you complete contact information for the nearest Agency, including an e-mail link and a website link.
High Blood Pressure Can Be One Sign of Sleep Apnea
Because sleep apnea happens while you're asleep, you may not realize that you have it… I have obstructive sleep apnea, and I can tell you what my symptoms were before I got an APAP machine:
• Snoring, according to my wife
• Stopping my breathing periodically while sleeping, according to my wife.
• Waking up occasionally with a gasp or a snort
• Waking up every morning with a headache and with my ears ringing
• Waking up feeling unrefreshed
• Being groggy during the day and needing a nap in the afternoon
• Not being able to remember the details of what happened the previous day.
• Being a dangerous driver, such as by rolling through stop signs as though they weren't there.
• Since I have allergies at certain times during the year, these would make the situation worse at those times by giving me congestion.
This is a sign rather than a symptom, but I also had high blood pressure. This is another one of the dangerous aspects of sleep apnea, if you don't realize you have it. Doctors don't always think about possible sleep apnea when they see someone with high blood pressure. A friend of mine had a stroke because of the high blood pressure from sleep apnea, not realizing that he had it. He recovered from the stroke, and now he has an APAP machine just like mine! … If it weren't for my wife's insistence that I get checked out a few years ago, I would probably have had either a stroke or an automobile wreck. – R
Joint Pain after Shingles
After a bout of shingles my joints killed me. My knees were particularly stiff and painful. I had tender points from hell adjacent to these painful joints. After about 4 weeks of this the pain and stiffness went away as mysteriously as it appeared. FM is a strange and frustrating illness. – B
Spring & Summer Storm Season Causes Flares for Me
I am in Florida and most of the year here we have thunderstorms and radically changing weather. This makes for so much pain. The barometric pressure change affects the synovial fluid in our joints causing pain and swelling. If there is a tornado anywhere in a tri-county area it adds a whole new level of excruciating pain. The worst flare or whatever I have ever been in (to the point of collapse and nearly passing out) was when a tornado went through several hundred yards from us; that I will NEVER forget!
Some people say winter is worse for them. Winter has its own set of aches, but the Spring and Summer storm season are really miserable for me. I can feel a storm at least 24 hours before it hits our area and I can tell how severe it will be based on how bad and where I hurt. (Believe me, many people have tested me on this and it is true). Yes my rheumatologist believes this; many do. Those docs that say otherwise are probably the same ones that say it’s all in our head. – S
If You Wonder Whether Your Knee Pain is FM or Arthritis…
Get your knees X-rayed, that way you will know what is going on…. I could not tell if my knee pain was FM or arthritis until I had both knee's X-rayed... Long story short I was walking bone-on-bone due to arthritis!... After seeing an orthopedic doctor and discussing my options (i.e., ongoing shots and pain meds), I opted for complete knee replacement on both knees.
The first was done in Sept. of 2007 and the second knee was done in Dec. of 2007. The surgery has given me back my mobility...and while I'm still healing, the pain level is way down! The doc said to allow a good year to completely recover. My only option was a wheelchair... and I was not ready for that! I'm now walking, driving, standing and moving with far less pain. I have my mobility back!
… I'm glad I had the surgery done even though it was a very rough thing to do. I have a wonderful husband who was there for me... and I really needed help after surgery. - C
Plantar Fasciitis – Help for the Heel Pain Problem
I know quite a few people with that very painful foot problem (plantar fasciitis). Some of the things that helped them were:
• Freezing a bottle and rolling it on the bottom of their feet
• Cortisone shots …
• CROCS silver cloud rx clogs (that 'rx' is part of the name, they don't require a prescription) found online
• Flector® anti-inflammatory patches (prescription, great and very, very expensive)
• Physical therapy
• Wearing a brace at night (the Podiatrist provided it)
• Prescription anti-inflammatory medication
• TIME = 6 mos to 1 year was the time frame one doc suggested.
Hope you find relief. - V
Note: The plantar fascia is a band of connective tissue like a tough rubber band that starts at the heel, supports the arch of the foot, and attaching to each of the bones that form the ball of the foot. Plantar fasciitis is a painful condition caused by damage to the fascia/inflammation – usually a sharp pain in the bottom of the heel when putting weight on it. One ‘clearinghouse’-type website that offers a wide range of foot health products is www.footsmart.com
Another Tip for Heel Pain of Plantar Fasciitis
I… have plantar fasciitis and do this quite often. To help relieve the soreness soak your feet in hot water (the hottest you can stand) with Epsom salts, and vinegar (white/cider). It really works! Just let your feet soak until the water cools. It may sound a little odd but honestly I have never found anything to help more quickly.
Children’s Book on Depression
Depression has come a long way to have a book to explain a parent's depression to their child. Check out the site below to see the book titled Why Are You So Sad? by Author and Therapist Beth Andrews. - T
How to Find Back Newsletters?
Q: I haven't received a newsletter about FM since 8/20/08. Any chance of getting the missing ones? And please sign me up again. - J
A: Just go to www.prohealth.com/bulletins/index.cfm?newsletter=health and click on “Sign Up.” There’s information pertaining to FM concerns in our ME/CFS and Wellness newsletters too, so you might want to sign up for those as well. To find archived issues of each newsletter by date, go down to “Archives.”
Support Groups Can Be Helpful in Preparing to Apply for SSDI
…[In my experience, sophisticated new tests such as for NK cells and interleukins, etc.] don't matter for us. I got my long term disability and didn't have any of that testing done. …but I did spend many thousands of dollars seeing a CFS Specialist who was unable to help me, although he wrote great letters. The problem was I found out they didn't count.
…The CFS Specialists who charge a lot aren't considered legit by most judges. You want to see regular MDs. (NKs are Natural Killer cells in your immune system and interleukins are part of the immune system too.) All that means nothing to the judges as, maddeningly, it's considered ‘fringe medicine’.
I feel that the important thing is to get doctor documentation. The best way to do that is to find doctors who believe you are disabled. The way I finally found some doctors who wrote good letters for me was by Googling for "Chronic Fatigue Syndrome (written out) Support Groups in _______" my town and then surrounding areas. Then I e-mailed the groups and asked for doctor recommendations; specifically doctors who are good at helping patients get disability. Even some of those were duds but I finally found a good Rheumy for my FMS and a family doctor who had had some CFS training.
They wrote letters and I also found a great chiropractor who wrote a letter for me. Again, you can ask support groups for names to save you time. Then ask the secretary over the phone if the doctor believes in CFS to save even more time and energy. That saved time and energy for me once I thought of doing it.
I believe that there are also materials here at Prohealth.com that explain how to file and win... I've heard that you don't need to get a lawyer either. Why waste the cash, time and energy? You can expect to be denied the first or second time whether you have one or not. But most people are approved by the third time.
Oh, and one more thing. Start keeping a list of all your symptoms each day and bring that to the doctors. I found a blank body chart online that I copied and then drew on as well. I used color markers for pain and weird symptoms and I had a key on them as well. That made documenting this crazy illness much easier.
The best investment I made towards getting my disability was buying a copy machine. I need it still to make copies of doctor notes to keep up with the paperwork of being on disability. – T
Tramadol – Interesting!
I know many people with FM take Tramadol [a synthetic opioid pain medication, aka Ultram]. I tried it a couple of years ago and unfortunately didn't help me much. BUT... we took our little 20 lb dog to the vet; she has some arthritis and obviously pain in her back legs. The vet prescribed Tramadol! Said it was very effective for dogs. I said, “I think my Mom has some left over, can we use that?” (sort of jokingly) and she said, “Sure but then your Mom's doctor will wonder why she's going through it.” I said, "yeah, the ol' dog ate it, probably wouldn't fly."
Anyway, she is Rx'ed 25 mgs twice a day. That seemed like a lot since adults take 50 mgs. We have noticed that her legs are more flexible and she's not as stiff. Her little legs were always just trembling. That has calmed some. Thought that was interesting. She was also Rx'd a low dose anti-inflammatory. Vet said the Tramadol is much safer for her, as the other can affect her liver enzymes. So - if you have a dog in pain - ask your VET about this! – J
How Can I Get Into a Clinical Trial?
Q: I have fibromyalgia and would like to see if I can get into a medication trial. How could I do that? - W
A: If your physician or local medical group is active in research, you can start by asking if there might be an upcoming trial you might qualify for. It never hurts to ask and express interest, and some trials are by invitation. But for most patients, the best way to see what’s out there is to go to www.clinicaltrials.gov, and search on fibromyalgia AND (your town or state). It’s a question of finding a trial that might interest you that’s within traveling distance. Trial listings offer contact info & an e-mail link to the study coordinator. New trials are listed all the time, and you can sign up for notifications.
Also, search the websites of FM clinicians such as Drs. Lucinda Bateman (Utah), Nancy Klimas (Florida), Charles Lapp (North Carolina), Daniel Clauw (Michigan), and Leonard Jason (Chicago).
And finally, you can post a question in ProHealth’s FM Message Board. Other posters may have just the info you need.
Simple Idea Helps Me Keep Track of My Meds
If I take my pain meds and I don’t write it down I can’t remember for sure what time I took them. So I’ve gotten into a habit of writing it on the bathroom calendar when I am taking the pain med. – S
Physiatrists Well Suited to Treat Fibromyalgia
RE: “Physical Medicine & Rehabilitation (Physiatry) – A specialty particularly suited to diagnose and treat fibromyalgia,” by Dr. Mark J Pellegrino, MD.
• My pain specialist is a physiatrist, and I can't say enough for what he has done for me. He treated me with appropriate drugs including narcotics (Vicodin and Oxycontin), which allowed me to overcome daily, debilitating pain. I've been off of Oxycontin for more than a year, and while I take Vicodin as needed, the pain for which I take it is considerably less than it was when I started out. He also sent me to a fine chiropractor, whom I see monthly or as needed. Both of these have helped tremendously.
What is needed, though, is some kind of secondary medical consultant, to whom the physiatrist can send FMS patients for education and emotional and physical support. Comprehensive should mean just that. Between my monthly visits to the physiatrist, I felt left out in the cold.
Dr. Pellegrino is correct in that we have to learn to manage our own care, but at first, this is a really difficult chore that could be made much easier by having the infrastructure, as it were, that would support the patient who is new to all of this. I am a teacher, so researching my own disease came naturally to me. I shudder to think of what it must be for someone without my background. - P
• Admission of limitations of this specialty is important. I was impressed that Dr. Pellegrino said that physiatrists are not qualified to formally diagnose and treat depression. Unfortunately, too many doctors are all too willing to treat psychiatric symptoms with psychoactive drugs, even though the only training they've received in their use has been from a drug salesman.
I also liked that Dr. Pellegrino does not lump everyone with fibromyalgia into one category. He also recognizes that some pain can be due to things that are not technically fibromyalgia, and which should be treated differently. Unfortunately, you need a doctor who can give you more time than most managed care situations allow to make the type of differential diagnoses Dr. Pellegrino is talking about. Fifteen minutes in and out just isn't going to cut it. - S
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