Here is where all the action will be. In addition to various informative links (on the previous page), new and usefull information regarding support, medications, support groups, Physician Lists, Research and anything usefull for our loved ones will be on this page. Check back often for updates and changes. Information will be preceeded by a date that it was added with newer information at the top.|
I have not had time recently to provide updates here. I have however keept information as to what is helping us curent at the Fibrospouse Email Group (link is on the first page). Some things that have happened in the recent past is that Lois got so tollerant of the pain meds that they ended up causing pain instead of aleviating it. A new doctor recommended a detox session to get off all the meds she was on and essentially start over. For all intents and purposes this action has worked. She is generally free of pain and uses only a fraction of the meds she was on previously. One of the things she has found that works well is to be on contiuous antibiotics. This seems to reduce the pain tremendously for unkonw reasons, but is documented by many doctors. She has droped all pain meds totally, and only occasionally takes a Motrin for the small flare ups she might experience. Main thing seems to be excercise and a dose of antidepresant to help alleviate anxiety. Currently we are on Paxxil. Best regimen seems to be the 3 times a week of excercise she is on at a local hospitals physical therapy center. Has done wonders.
We also have moved back to Montana and got her out of the heat in las Vegas. Seems that warm weather just did not agree with us or her (actually it was downright hellish hot there). Anyway, for more info please join the email group and see the updates posted there.
A great article from our local Fibromyalgia Support Group that is relevant to this site.
Guide For Relatives And Companions
If you are a spouse, friend or family member of a Fibromyalgia patient, YOU may need just as much help as they do. In fact, you could need more. There 'isn't much written or said about partners or friends of Fibromites these days and it is quite unfair. When a loved one has a chronic illness, everyone around them is affected. It changes the dynamics of the home, workplace or wherever this person is as they try to regain their health. People have mixed feelings about how to act and what to do or say in these situations. There is no map for the well spouse or friend to follow.
The most confusing things to you are probably, "How can anyone be in some level of pain all the time? How can he/she be tired so much? Why is all this medicine necessary? What happened to my lively companion? How long will this last? How do I get him/her lively personality back? Will I ever get the person I love bark?"
These are valid questions. To understand and help, you need to read all the Support Group manuals, newsletters and books available. Go with him/her to support meetings and doctor appointments. Learn all that can be done for improvement so "she" (or he) will progress easier and faster. Sometimes you may understand more than your partner about what really needs to be done. Aggressively sustain efforts towards symptom control. As the primary care doctor works on restful sleep and getting all systems back in balance, ask about pain-management - whether the primary wants to do it or use a specialist. Dragging things out with appointments every month or two will bring great frustration. If he/she isn't becoming more comfortable in a week or two, it's okay to call about another appointment or adjusting medications.
The right combination of medications and treatments never comes in the first visit. Each person is different and requires extended care to become more level. You are presenting the physician with a mystery to unravel so the closer you work together, the better. Your objective is to not just seek relief, but also healing and true improvement. After years of over activity and unrefreshed sleep, the FM person's bodily functions in many areas are damaged and require proper rest and time to heal. Within the first year, this can greatly improve, the pain level can drop and your loved one can slowly begin stretching/walking/water therapy and other activities to strengthen his/her bodies.
With even moderate symptom control, you might see proud signs of improvement in his/her smile and enthusiasm. Of course, the beginning will not be all smiles. It may be very difficult for both of you until treatment starts working. As the "manager" you can keep track of what medications didn't work so you won't lose time repeating them. Also monitor allergies or negative reactions. It would be very helpful for you to keep a small notebook logging in what is taken and the time of day to help evaluate how they affect your friend/spouse. This is a wise practice to continue so there is never doubt about what was taken when - otherwise you risk over or under taking medications. Either over sight can cause problems.
Expect changes in your home life to be part of this process. It's not much different than living with a diabetic, caring for someone with a broken leg or recovering from a serious surgery. Your friend needs help in recovering and becoming functional again. The only difference is that this condition is chronic and some of the lifestyle changes taking place may be permanent. Organizing things differently is a small price to pay for regaining the health and pleasure of being with the person you love again.
Some things will have to change to keep your partner doing well after adjusting to FM. The first thing to handle is reorganization of the physical jobs at home or work, shopping, cooking, laundry and even entertaining at home. Emotionally an FM person will want to maintain the same standards. However, it must be done differently through assigning tasks to other family members or bringing in help. A hard day of cleaning or housework can set an FM person back tremendously! By lightening the physical load of vacuuming or scrubbing, he/she can retain enough strength to be an enjoyable companion again. Your pleasant relationship and fun times together are far more important than any household chore! They will learn their limits quickly and know when to stop. Pacing activity and using energy wisely allows them to maintain physical and emotional stability. Like a bank account, they have a certain amount to work with and must spend it wisely. Before going out, give them the chance to rest for a half hour so they can last longer having time with you. Also, realize that mornings are not always the best time of day for an FM person. Some need a couple hours to feel "human" and face the world! Planning activities ahead will be a great help.
Anticipate that both of you will have "off days" when you just don't feel like dealing with FM and he/she may not feel very sociable either. You are both coping with lifestyle changes that are difficult. The well spouse or friend can suffer just as seriously as the FM patient. Both are experiencing a sense of loss for the way things used to be and grieving for these losses. This natural emotional reaction can be expected and dealt with through truthful talking or counseling. Honest communication lines must stay open to survive this transition period. Realistically neither party can "fix" the other and this should not be expected. BOTH really need to be heard and understood. There is a small inexpensive book available called, The Grief Recovery Handbook by John W. James and Russell Friedman. It is very helpful to couples dealing with any problem because it explains the process of working through life problems involving change or loss.
Another helpful practice is to "forgive, forgive, and forgive". Under stress, we all say and do things we don't mean. Sometimes it's easier to realize you are both struggling and to not have such high expectations of one another. Then when something goes right, it is greatly appreciated. Also, do not let the label of FM define your personality. Focus on who you really are inside, the people you love and living as fully as possible.
We will be going to see the doctor this Friday for a rotation of pain meds. That will give us a good indication if the previous partial success will continue. So far there has been a good reduction of pain and the worst flare-ups have been manageable. The weather changes recently here in Las Vegas have had quite an effect in causing flare-ups.
Another thing that seems to have been effective over the years is a antibiotic. Strange as that may seem, Lois has had a significant reduction in pain when she has had other ailments (such as flu, a cold, and quite often a sinus infection) and the doctors have put her on antibiotics. During a recent flare-up we switched to a different antibiotic (also recommended for rotation) and the dramatic increase in her pain all over was almost unbearable. We attributed the tremendous pain to a flare-up due to weather changes. But when we switched back to the previous one a week later, Lois had an almost overnight reduction in pain to the point of being pain free. She is taking Biaxin 500MG once a day at night (night tends to work better in reducing stomach upset). This is something that might be discussed with your own physician. Previous physicians had suggested that Lois might have Lyme disease and she has had extensive tests to check on this possibility. She does not have Lyme Disease and the antibiotics seem to help a large amount in reducing pain levels. I could be worth a try, so see if your doctor may be willing to go along with it.
Send us an email if you would like to hear more about this and anything else you may see on this site. We are always happy to share and love to hear from others.
Partial sucess story: We have been trying to convince our doctor to use a rotation of medications and have been sucessful in having the Doctor go along with it. We have noticed that every time a new medication has been tried, it works short period of time in handling the pain. Then after a month or two it has lost effectiveness. Our understanding is that the loss of effectivenss is due to the body building up tolerance for the pain medication. The end result in the past has been the Doctor increasing the dosage. The increase in dosage has rarely been as effective as when the "new" medication was first started.
Recently we saw some information on a site that supported a rotation of medication over a period of one or two months. The idea behind this is that the body would start a new medication while at the same time ridding itself of the built up toxins of the older medication. The new medication would again be effective at a lower dose.
So far it has been successful. My soulmate is on a dose of Percocet (up to 6 per day) along with Demerol to help when the weather is bad or it gets a bit worse. At the end of this month we hope to be on a different medication and will report here if it continues to be effective at lower dose. Hopefully this is one way we can combat the pain at this time. We will also try some of the other things we have found on various sites in the links I have included on the previous page.
In the next 10 years the term "fibromyalgia" may be replaced, perhaps with one of the following terms:
--> 1. Neuron (or neural) network disorder.
--> 2. Complex Chronic Pain Disorder.
--> 3. Regulatory Dysfunction Syndrome.
--> 4. CNS Myalgia (central nervous sysrtem + muscle + pain).
--> 5. Myalgic Encephalopathy (muscle + CNS Disorder) Currently used in Britain.
Fibromyalgia as a term will be discarded since this is not a disease primarily of muscles and fibers. Whatever new term is chosen will reflect a major role for the CNS (central brain and spinal cord) in causing and sustaining the disease. It will also reflect the variability of chronic complex pain disorders. The variability of FM is a problem for clinicians today. However, with increased awareness and the mumber of people being diagnosed (approximately 12 to 15 million in the U.S. now) we are hopeful that there will be more recognition and improved understanding of this incurable, but treatable disease.