Fibromyalgia Syndrome Relief

I hate asking for help. I’ve always thought of myself as a strong, independent person, and asking for help with things I think I “should” be able to handle is like admitting weakness. But you know what? I need to get over it.

The reality is, I have fibromyalgia. I’m not sick because I’m weak, but I have to accept that I have certain weaknesses because I’m sick. That means sometimes I have to ask for help.

Even though I’ve regained a lot of my functionality, I can’t do everything myself. It’s hard enough to raise 2 children, cook meals, clean a 4-bed/3-bath house, and maintain a third of an acre while working from home when you’re healthy! My husband and I share the housework, and I try to carry my share. I have to admit, though, that I can’t get through a week without him having to pick up some jobs that are typically mine. If he doesn’t do a load of dishes or fold some laundry on a fairly regular basis, I get behind and can’t catch up.

At times when my health has been especially bad, we’ve had to ask for outside help. Because of either distance or jobs, most of our family members can’t jump in at a moment’s notice, so we end up relying on his nearly 80-year-old grandmother — who maintains her own house and yard and can run circles around me on my best days. We’ve depended on her to get our son to school when I can’t drive, watch our daughter on days I can’t take care of her, stay with the kids while we go to the emergency room, etc.

I feel a lot of guilt over asking for this help, and my guilt keeps me from asking for more help, from more people. It’s a tough thing to deal with, especially when it’s a battle to maintain a positive self image while regularly saying, “I can’t.”

Feelings like this are all part of accepting our illness — which is not the same as giving in to it. My acceptance level is fairly high, but I do still have some issues (like guilt) to work through. I know that the more I accept my illness and limitations, the more I can work to overcome them instead of battling against them. I know that acceptance can help me recover. I really do try not to feel guilty, but I’m just not there yet.

Now and then, I go back and re-read this article on reaching acceptance and why it’s important for us:

• Acceptance for Living With Fibromyalgia

It helps me clarify things in my mind and re-focus my efforts where they really matter — nothing is served by wasting energy on guilt over things I can’t control. I hope it will help you, too.

Have you struggled with guilt over asking for help and relying on others? What has been hardest for you? What has helped? Share your experience by leaving a comment below!

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• Grieving What You’ve Lost to Illness
• 10 Important Lifestyle Changes
• Develop Better Coping Skills

Photo &copy SW Productions/Getty Images

Guilt Over Asking For Help With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, February 8th, 2010 at 06:00:13.

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“Your attitude will take you up or take you down. So the question is, what are you thinking?”

Casey Treat

If you have Fibromyalgia or Chronic Fatigue Syndrome, you know that your attitude is important. If you take the stance of poor me, you hurt more and you are depressed. You don’t want your IBS to rear its ugly head either. Who wants to go there? Not I.

If you do not have a chronic disease and take the attitude of poor me you still get depressed.

Your attitude is everything. It’s ok to have a pity party periodically, but don’t go there daily or you will be in a pickle.

Watching the Superbowl and it’s a great game so far.

One of the few consistencies of fibromyalgia and chronic fatigue syndrome is inconsistency. We never know from day to day how we’re going to feel, and that means planning can be difficult or impossible.

A recent comment here put it perfectly. Lisa B wrote:

“I live in a world of Maybes.

Maybe I can go to your party.

Maybe I can do this photoshoot.

Maybe I will get well one day.

Maybe I can clean my house today.”

-Lisa B

The “maybes” make it hard for us to maintain a job, a social life, relationships, you name it. Even scheduling something simple like a parent-teacher conference can be stressful — will I be able to make it? Will I be able to present myself well? Will I be able to have an intelligent conversation and remember what was said? Same goes for doctor’s appointments, parties, family functions, lunch with a friend, etc. I have all the sympathy in the world for those of you who have to go on job interviews or make presentations to clients — even thinking about it makes me a little panicky.

What I’ve had to do, first, is accept that sometimes I will need to cancel plans. The alternative is not making them at all, which means I’m giving up on a lot of things I want to be part of my life. Sometimes I feel like a flake, and other people might think that I am, but the times that I can make it are worth that risk.

Second, I try to be as open about my health problems as possible. If people know I have limitations, they won’t expect as much from me and they’ll understand when I say I just can’t do something. And quite frankly, if they’re not willing to cut me that slack, they’re not worth my time anyway.

Third, I definitely agree with a recent commenter who wrote:

“I learn to gravitate toward those that have health problems like myself.” -Kristi

I have a good friend with a severe form of arthritis. We both understand that plans are always contingent on how we’re feeling, and we spend a lot of time just sitting around talking (frequently with ice packs, heating pads, etc. on both of us!) It really does help to have at least one other person in your life who has physical limitations. If you don’t have someone like that, try local support groups or (if you’re up to it) an arthritis/fibromyalgia aquatic exercise class. If those options aren’t possible, try connecting with people online, like in a forum — you can form strong relationships without having to get dressed or leave the house.

What has helped you deal with the “maybes” inflicted by your health? What have your challenges been? How have you tackled them? Leave a comment below!

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• How to Pace Yourself
• Acceptance: Why It’s Important & How to Get There
• Grieving the Loss of Your Old Life

Photo &copy Tom Fullum/Getty Images

A Life of “Maybe” With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, February 6th, 2010 at 06:00:14.

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Inside every sick person is a well person wondering what the hell happened. Anonymous

I think I posted this statement before. I ran acrossed it again and thought about it often today. I think Fibromyalgia sufferers do consider why did the good Lord pass this nasty disease to me? I’ve thought about God wouldn’t give you anything you could not handle.

I feel I understand and am handling my Fibromyalgia.

I know that when my body says it can’t continue, that I must at least sit but best to lay down. My body needs to rest.

If I continue to push myself, a flare is a given.

I know that I can’t have more than one glass of wine or my pain increases the next day.

I know I can only walk or exercise for a short time or my pain increases or a flare takes over.

My IBS is under control unless stress is in my life. Anxiety…I’m still working on.

I’m doing well on my prescription medication. I was fortunate to have a doctor who put me on a good regimen.

I know that if I take my medications before 9 am I do fine. But if I take them after, my whole day is off. I hurt more.

I feel I’m under control, except if a flare arrives. I get a flare when I’ve overdone and pushed my body to do things that are now difficult. It’s hard to remember you can’t participate in life as you did before Fibromyalgia.

So I wonder “what the hell happened” EVERY day.

Blogspot won’t let me place my own spacing. I hope you can read this ok

Had a leisurely breakfast this morning then prepared the RV for travel. We moved south, about an hour down the road, to another BLM long term visitor’s area (LTVA). The area is called Senator’s Wash and is located behind the Army’s Yuma Proving Grounds. It is dry camping but there are many amenities. Water, dump station, garbage, drinking water, propane, thrift shop, library, mail, and a gentlemen sells solar panels. We have access to the Army base to see a movie. The base also provides emergency medical care with ambulance. We can see for miles and look at the Chocolate Mountain Range. So quiet here.

As we were pulling into the LTVA we saw a couple we met two years ago, Harold and Judy.They were out for a walk. It was nice to see them. We found an available parking area next to the one we had two years ago. There are many more folks here than two years ago. We are only two RV’s away from Harold and Judy. The area is very rocky. I could feel my body tense from the rugged roads. BLM grades them each year, but with the extra traffic, they are torn up.

After setting up the RV, we had lunch and I took a nap for an hour. Judy poked her head in to say hello for a minute. They were expecting company so could not stay long. We will have a good visit on Saturday.

Fixed chicken for dinner. It was good. Have been doing computer work this evening. Dwain has been playing his harmonica and I need to get away from it soon. The high pitched tones in the evening are shrill. One of the symptoms of Fibromyalgia is light and sound sensitivities. I have the most trouble with sounds in the afternoon and evenings. Seems to be when I’m more tired. The light bothers me anytime of day.

Tomorrow we will go to Yuma and do a little grocery shopping. Dwain wants to go to Home Depot and get the oil changed in the truck. We will probably have lunch at The Golden Corral, which is a buffet.

My Fibromyalgia has been doing ok today. Had a little trouble with the drive and the rough road, otherwise symptoms have been contained.

Time to do the evening dishes and get to bed.

NEWSBRIEF: The FDA has approved morphine sulfate oral solution for people who are opioid-tolerant and have moderate-to-severe acute or chronic pain. It’ll be available in doses of 100 mg per 5 mL or 20 mg per 1 mL.

This is the first time this drug has been available at this dosage. Morphine sulfate has been available and commonly used for years, but this is the first time this concentration has been approved for this specific use.

The approval is part of the FDA’s Unapproved Drugs Initiative, which aims to test drugs that are frequently prescribed off-label and make sure they meet FDA safety standards, and then approve them so doctors have better guidelines for giving them to patients.

People who take opiate pain relievers long term can develop a tolerance, which makes them need more of the drug in order to get pain relief.

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• 7 Types of Fibromyalgia Pain
• Fibromyalgia Drug Treatments
• 5 OTC Drugs to Keep in Your Medicine Cabinet

FDA Approves Pain Drug for Opiate-Tolerant Patients originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 4th, 2010 at 06:00:17.

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NEWSBRIEF: The immune-modulating drug that’s so far failed to gain FDA approval as a chronic fatigue syndrome treatment now has some data backing its use in cancer immunotherapy.

Stanford University researchers say Ampligen (rintatolimod) “shows promise” at making some cancer immunotherapies more effective. They also say that Ampligen enhanced T-cell stimulation and caused the release of proinflammatory chemokines an cytokines. They also say it had these effects without the toxicity of drugs currently in use. The peer-reviewed article was published in the American Journal of Obstetrics and Gynecology.

Ampligen’s manufacturer, Hemispherx Biopharma Inc., tried last year to get the drug FDA approved for chronic fatigue syndrome. In December, the application was denied, but in its Complete Response Letter the FDA made recommendations to the company about what would be needed for possible approval. Hemispherx has said it will try to fulfill those recommendations and try for approval once again. Ampligen currently isn’t approved for any use.

Ampligen also is being studied in Japan as a flu-vaccine enhancer.

In Related News: The FDA has reevaluated and approved a subcontractor working with Hemispherx to manufacture Ampligen. Problems with the subcontractor’s facility were noted in the Complete Response Letter mentioned above. This is at least the second goal Hemispherx has met in regards to the Letter, but it still would also need more clinical trial data to reapply for FDA approval.

• Learn more: Ampligen

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• Chronic Fatigue Syndrome Drugs
• Supplements for Chronic Fatigue Syndrome
• The Monster List of Chronic Fatigue Syndrome Symptoms

New Data on Ampligen’s Immune Impact originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, February 3rd, 2010 at 06:00:07.

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On Tuesday we drove to Mesa, Arizona to visit with our former neighbors from Knappa. This is nearly a three hour drive. Two of the three rest areas were closed. We didn’t stop to stretch so we were both a little stiff-legged by the time we arrived. Gary is struggling with congestive heart failure, diabetes and kidney problems. He is now on dialysis three times a week and will continue for the rest of his life. We had a great visit and were able to meet two of their friends. It was another three hour drive back to Quartzsite.

Wednesday we did a few chores before heading for Parker, Arizona. This was a 30 minute drive. We had lunch with our friend, Betty. We met Betty when she spent a summer in the same RV park in Wallowa. We hadn’t seen her for three years, but we talk periodically on the phone. Betty suggested we eat at Paradise Cafe in Parker. The cafe was decorated in happy colors but not over done. We all enjoyed our lunch. But the best was conversation with Betty. After catching up for three hours, Betty headed back to Needles, California where she is staying this winter and we stopped for a few groceries. We plan to do big shopping on Friday but needed milk, etc.

When we returned home we did chores towards getting ready to move the RV to Senator’s Wash tomorrow, which is 20 miles north of Yuma. It’s about an hour drive south from Quartzsite. By the time we got back to Quartzsite this afternoon, I was exhausted. My body felt like it weighed 300 lbs. I sat for a bit then got dinner into the oven, but couldn’t do more. I read while dinner cooked.

Our visits with friends is uplifting. Certainly worried about Gary’s health, but such a joy to see our good friends.

NEWSBRIEF: Is this the change chronic fatigue syndrome advocates have long awaited? According to the CFIDS Association, as of Feb. 14 Dr. William Reeves will step down as head of the CDC’s Chronic Fatigue Syndrome Research Program.

It appears that, at least temporarily, Dr. Elizabeth Unger will head the program. She is Acting Chief of the Chronic Viral Diseases Branch, which oversees the chronic fatigue syndrome work. Dr. Unger is a virologist, and speculation abounds in the chronic fatigue syndrome community over whether this will signal changes in how the CDC views and researches the condition.

Dr. Reeves has long faced harsh criticism for, according to critics, focusing on chronic fatigue syndrome as a “biopsychosocial” condition and allying himself with British research who also favor this controversial view. Advocacy groups have called for him to step down or be ousted for years.

I’m a relative newcomer to the controversy over Reeves and the CDC and I’m far from an expert on it. A great guy named Cort Johnson is one of those who are familiar with every nuance of this issue, so here’s what he has to say about it:

• Dr. Reeves Removed from the CDC’s CFS Research Program

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• A Simple Explanation of Chronic Fatigue Syndrome
• XMRV & Chronic Fatigue Syndrome
• Understanding Brain Fog

Reeves Is Out — New Directions for CDC’s Chronic Fatigue Syndrome Research? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, February 2nd, 2010 at 06:00:08.

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