MarFran :- Fibromyalgia Community -: Support Group

Does anyone else besides me suffer from low-grade fevers? I've wondered if that's typical...

Posted by MarFran

2 Replies | Reply | Watch This DiscussionReport This| Share this:Low-Grade Fevers Does anyone else besides me suffer from low-grade fevers? I've wondered if that's typical...

Reply: For All our new members

Response to pocotaz: Thank you for your welcome and encouragement. I just joined this...

Posted by MarFran

Response to pocotaz:
Thank you for your welcome and encouragement. I just joined this online support group on WebMD a few weeks ago. It's nice to have a place to go to to vent my frustrations to understanding people because my husband doesn't like listening to constant complains and it's hard to hold my problems inside sometimes. There is a whole wealth of information and facts about fibromyalgia on this website and it's wonderful to hear about everyone else's experiences which keep me from feeling so alone, especially when I'm so isolated socially from people now that I'm no longer able to work or get out much. It's amazining how many people have such similar problems and I'm glad to be able to offer a comment or suggestion whenever I can to help others, or at least make them feel they aren't alone in what they are experiencing.

I've had fibromyalgia/CFS over 20 years and even though I've found some ways to cope, there are still times when it's so difficult. It took me about 2 years to get diagnosed and it was such a relief to finally have a name attached to what was wrong with me; however, at that time my doctor explained so little about fibromyalgia, as though it wasn't a very serious or debilitating condition, that I didn't even take it seriously enough myself to believe it would be such an ongoing thing until I was rediagnosed 3 or 4 years later at the Mayo Clinic in Scottsdale, AZ where I lived at that time--and they educated me about this.

It's especially hard dealing with people who don't believe fibromyalgia is real and take my problems seriously. They can't understand how debilitating a condition this is, even after I explain it has now been accepted officially by the Social Security Admin. as a true disability and I won my case, although after a long 2-year battle. I don't know why there are still such skeptics and I wish there was more publicity on TV with stories from real people who are suffering and struggling. Perhaps because there aren't any definitive blood tests as proof, people (including some doctors) don't believe it's real.

I find people's disbelief very upsetting because I have many limitations from fibromyalgia/CFS that affect me on a daily basis preventing me from living a normal life. The unpredictable nature of this condition with symptoms that come and go causes many problems is sustaining employment and conducting my life at home because I never know when I'll feel well enough to do things or how long I'll feel well. Therefore, I have to pace myself, making sure to take breaks to rest and relax so I don't overdo anything, but the slightest little nothing can sometimes cause a flareup. The only way I can do to try and cope with the after-affect fatigue and other symptoms that incapacitate me, such as low-grade fevers that knock me out of commission, after I've made a family dinner or gone on an outing is to plan ahead and space things out that I have to do and then make sure I have nothing planned afterward to allow for time to rest and recuperate, which can be a lengthy process.

Again, as I've said before, lack of awareness and understanding of fibromyalgia is one of the most frustrating things for me to deal with, so that's why this support group is so beneficial. No matter how much I've learned about fibromyalgia over the years, there's always something new to learn, especially from other people suffering from the same condition, so I value everyone else's input to this website. I would definitely refer anyone with doubts about the realities of fibromyalgia to spend even just 5 or 10 min. reading the information and comments made here on this website, which is excellent testimony to the truth about how people's lives are greatly affected. We aren't lazy, paranoid or chronic complainers who are using lame excuses to get out of doing things.View Thread

Posted byMarFran

121 Replies | ReplyReport This| Share this:For All our new members Response to pocotaz: Thank you for your welcome and encouragement. I just joined this...

Reply: PTSD Flashbacks and FM Flares

I've never been diagnosed with PTSD by any doctor--just myself because when I suffer from...

Posted by MarFran

I've never been diagnosed with PTSD by any doctor--just myself because when I suffer from fibromyalgia/CFS flare-ups, it often brings back bad memories of difficult situations I've had with my now estranged brother and sister-in-law who treated me so unfairly with their horrible attitude of disbelieve about my inabilities. They could not accept how debilitating fibromyalgia was for me or that I had severely painful back trouble as well which incapacitated me severely a times. Even though I've tried to consider the source and remind myself that my sister-in-law is is a paranoid and deluded person who believes everyone lies and I should not pay any attention to her, it's upsetting that she has turned my brother (and only sibling) against me. At one of the worst times in life when I was dealing with the loss of my mother when she died 3-1/2 years ago, I had to also cope with the loss of my only brother--the last remaining member of my immediate family that I grew up with--and he's alive (we became estranged and haven't spoken since the weekend my mother dies.) Even though I wasn't close pals with him, he was really all I had left from my side of my family with both my parents gone now, aside from my husband and 3 children, of course. I have some other distance relatives, but that's not the same as losing someone so closely related who was raised in the same household with you. Even though my mother had a difficult personality and was hard to cope with, I still loved her and never tried to get out of helping with her care because of that like my sister-in-law seemed to feel. I certainly wasn't making up lame excuses not to fly 2000 miles across the country to avoid providing help to relieve my brother and his wife. Years ago I quit a job for 8 or 9 mo. to stay home and care for my mother after she had 2 major surgeries, and then I was involved in taking care of her when she lived in my home an average of 2 to 5 mo. each year over a 17 year period, which was a strain on my marriage. In addition, I did a huge amount long-distance, keeping in touch and on top of things with my mother and her caregivers, doctors, nurses, physical therapists, etc. whenever she had medical emergencies, plus I shopped for personal items and sent them to her and arranged for medical supplies or equipment to be ordered for her. I also I spent weeks doing tremendous research to find a suitable nursing home for my mother at the end of her life, struggling and working hard day and night--early and late because of the time zone difference...and all while simultaneously dealing with my own difficult back trouble, etc.--all with no thanks from my brother. My mother lived alone in her own home and I must point that she never spent more and maybe 3 nights sleeping over at my brother's house over the years, so he had no idea how difficult living with her could be, although in her good moments she was nice company for me, so it wasn't all bad. After all I did for my mother in person and long-distance, I did not deserve the treatment I received from my brother, including details I won't go into about how he cheated me out of belongings left in my mother's house after she died. How can I not have nightmares about the awful experience I had with my brother, with his horrible attitude towards me after he refused to acknowledge and belittled my help abd minimized all my health and physical problems. I try hard to put this in the past and keep reminding myself that I don't need disbelievers and people like that in my life. Fibromyalgia/CFS at least partly responsible for this estrangement of mine that may last a lifetime.View Thread

Posted byMarFran

2 Replies | Reply | Watch This DiscussionReport This| Share this:PTSD Flashbacks and FM Flares I've never been diagnosed with PTSD by any doctor--just myself because when I suffer from...

Reply: literature confirming fibro as a true disease

In the past 20 years since I was first diagnosed with fibromyalgia/CFS more has been...

Posted by MarFran

In the past 20 years since I was first diagnosed with fibromyalgia/CFS more has been learned and publicized about this condition. Since then, with the availability of the Internet and more access to information, I've learned a lot and I've met more and more people who have at least heard of fibromyalgia. In the beginning I wasn't skeptical about the reality of fibromyalgia/CFS because I knew my pain and fatigue problems were very much real and not all in my head. However, it was disturbing that my own doctor didn't inform me about it property, as though it was just a technical term on an office form for the purpose of getting insurance coverage. He did not educate me as to what this really was all about, so I was in the dark about my condition for quite awhile until I found sources of information on my own and also through the Mayo Clinic where I was treated and re-diagnosed in 1997. I think one of the main reasons some people don't accept fibromyalgia aas real is because there are no definitive lab tests for it, but there doesn't have to be to make it real. Unfotunately, I think that even adversely affects some doctor's opinions too, but hopefully that will change now as more and more is being learned. In the beginning, my fatigue gradually got worse and worse and would last longer and longer--for months at a stretch. I kept going to my doctor to seek answers and had numerous tests to rule out everything else it could be with negative results all the time. Again, that does not mean that any particular condition isn't real--it's just that much is unknown and no diagnostic test has been figured out for yet. For years, I kept thinking I was just suffering from "burnout" from my hectic lifestyle and all the job stress I was under, and I thought I just needed more time to rest and recover...and then a little more and a little more time, but eventually I realized I didn't just have a temporary condition. About 13 or 14 years after my onset and having to give up employment, I applied for Social Security Disability and won my case after a 2 years and 2 appeals. I was lucky to have an understanding Administrative Law Judge who was familiary with fibromyalgia. The monetary rewards were not great, but anything was better than nothing and I was thankful to gain a desperately needed monthly income and be able to go on Medicare a year later which is what Disability qualifies you for. Getting approved for Disability benefits gave me that greatly needed validation for my illness, so I'm living proof this fibromyalgia is very real.View Thread

Posted byMarFran

27 Replies | Reply | Watch This DiscussionReport This| Share this:literature confirming fibro as a true disease In the past 20 years since I was first diagnosed with fibromyalgia/CFS more has been...

Reply: FMS and disability

I'm glad you won your case and it was great that you found a health advocate. I've dealth...

Posted by MarFran

I'm glad you won your case and it was great that you found a health advocate. I've dealth with fibromyalgia/CFS for almost 20 years and couldn't apply when I had to quit working in 1994 because the Social Security Admin. didn't accept fibro as a disability, but things things changed and I discovered in 2005 that they recently began accepted it. Two years after moving to the Seattle, WA area from Arizona, I contacted 2 lawyers who were willing to take my case, but they were so discouraging and I didn't have confidence they could win for me, so I acted as my own lawyer, fighting my case all by myself...and I won, but it took 2 long years of fighting and 2 appeals. The lawyers fees are controlled by the Social Security Admin. and it's true that you don't have to pay anything if you don't win. However, they said they'd have to charge me "out-of-pocket" fees for things such as their travel back to AZ to investigate my case and interview my former doctors, employers, neighbors, etc. and their fees could run up too high since it I wasn't expected to settle my case for any fortune (which was not my intention because I just needed a monthly income). Since I knew my case with my medical history and physical inabilities better than anyone else, I did as much research as I could and armed myself with a stack full of documents when I went in for my 2nd hearing with an Administrative Law Judge. He even remarked that people usually, or always) come with a lawyer to the hearing and offered to give me extra time to go out and get one, but I declined the offer because I waited so long for that hearing already and felt too wiped out to continue and drag out that battle any longer. I knew my facts and presented hard evidence in the form of many documents from doctors and letter of testimonial that I gathered from a couple doctors, a former employer, a close friend I had confided in for years who would attest to my honesty, and also my husband (as a first-hand witness), who also came to my hearing and spoke up for me. I applied 13 years after the onset of my illness, but since they can only grant a settlement dating back one year prior to your original application, I lost out on 10 or 11 years of disability payments, but I never expected that anyway and was happy they covered that previous 3 years. Those 2 years that I fought my case took a great toll on me with all the stress and worry. It was an added benefit one year after my disability payments began to be able to go on Medicare also and not worry about insurance, although you have to pay for that and it's deducted from Social Security. I was particularly trilled to get the validation for my long illness and the judge even apologized for not being able to grant benefits all the way back to 1994. Unfortunately, in spite of that validation, it did not pay off in convincing my brother and sister-in-law (who live 2,000 miles away) that I have such severely debilitating and life restricting problems which contributing to my not being able to fly across the country to help our ailing mother prior to her death. That situation resulted in our becoming estranged over 3 years ago and it's a shame some people are so ignorant and don't take even 5 min. to research fibromyalgia on the Internet which is readily available to them and believe the true ffacts.View Thread

Posted byMarFran

1 Reply | ReplyReport This| Share this:FMS and disability I'm glad you won your case and it was great that you found a health advocate. I've dealth...

Reply: Warm Showers

Yes, I agree that warm showers can help with some pain. I shower every morning soon after I...

Posted by MarFran

3 Replies | ReplyReport This| Share this:Warm Showers Yes, I agree that warm showers can help with some pain. I shower every morning soon after I...

Reply: Mayo Clinic

The Mayo Clinic also has a branch in Scottsdale, AZ where I used to live (only 5 min. away)...

Posted by MarFran

4 Replies | ReplyReport This| Share this:Mayo Clinic The Mayo Clinic also has a branch in Scottsdale, AZ where I used to live (only 5 min. away)...

Includes Expert Content

Reply: The Fibromyalgia Worker

I was officially diagnosed with fibromyalgia/CFS in 1994, in my late 40s, after about 2...

Posted by MarFran

I was officially diagnosed with fibromyalgia/CFS in 1994, in my late 40s, after about 2 years of not knowing what was wrong with me and seeking answers. At the time, my internist never explained this condition sufficiently to me and I didn't learn what it was really all about until I was re-diagnosed by another doctor in 1996 or 1997. For years I thought my condition was only temporary and I was just suffering from "burnout" due to my hectic life with 3 children and a job. I thought I just needed some rest and was forced to quit full-time work in 1994, continuing a little later on in 1997 with some temp work, which I also had to discontinue when I couldn't manage to keep up with that. I inquired about Disability with the Social Security Administration, but at that time, they didn't accept Fibromyalgia/CFS as a disability. In 2005 when I decided to seek employment again, I realized I still couldn't manage working, so I inquired about Disability again and discovered things had changed and they recently starting accepting Fibromyalgia as a disability, so I applied (13 years afer the onset of my illness). I finally won my case in 2007 after a long 2 year battle involving 2 appeals. However, I lost out on 11 years worth of Disability benefits since they only allow retroactive benefits one year prior to your date of original application. Knowing that my settlement would be small and I had a complicated old case dating years back and that originated in another state (AZ) from where I currently live (WA), lawyers were discouraging about my case, so I decided to fight it on my own without a lawyer since I knew my medical history and inabilities better than anyone else ever could. I did as much research as I could and gathered many written documents in support of my case and to proof my honesty. It's a miracle that I won, but it took a great toll on my health during those 2 stressful years. It was wonderful though to have my disability acknowled going back all those years, by an administrative law judge who was apologetic for not being able to grant benefits all the way back to my onset date. I was especially happy to receive the validation for my medical problems and how debilitating they were and relieved to finally have a monthly income, however small (the same as my retirment benefits). I'm 67 years old now and was officially on Disability for 4 years until I turned 66 and was switched over to Social Security "Retirement" benefits once I became fully eligible for that. It's hard to live on Social Security alone though and I wish I could get a part-time job working at home for the extra income, but that seems to be impossible. I feel very cheated out many good earning years when I could have prepared myself better for retirement.View Thread

Posted byMarFran

161 Replies | Reply | Watch This DiscussionReport This| Share this:The Fibromyalgia Worker I was officially diagnosed with fibromyalgia/CFS in 1994, in my late 40s, after about 2...

Reply: Where is everyone from?

I'm new to this website, and it was nice to find an online group since there are no support...

Posted by MarFran

257 Replies | Reply | Watch This DiscussionReport This| Share this:Where is everyone from? I'm new to this website, and it was nice to find an online group since there are no support...

Lyrica and Other Medications

I'd like to know how many of you have tried Lyrica and if it has helped you at all. After I...

Posted by MarFran

0 Replies | Reply | Watch This DiscussionReport This| Share this:Lyrica and Other Medications I'd like to know how many of you have tried Lyrica and if it has helped you at all. After I...

MarFran

Latest Activity