Anyone New To This Board?

Discussion in 'Fibromyalgia Main Forum' started by earthdog2000, Aug 6, 2011.

  1. earthdog2000

    earthdog2000 Member

    Hi all,

    I have noticed that several people are new to Prohealth and this msg. board! I would like to say WELCOME to all of you and hope that you will post or reply so we can all get to know you. I love this msg. board because there are so many truly caring and kind people here. There is also a wealth of info, advice and support offered which helps us all so much in just living with our diagnoses. Welcome all and I hope that your experience is as fantastic as mine has been. Please feel free to come on and introduce yourselves!

    Faith, Peace and Hope, Julie
  2. earthdog2000

    earthdog2000 Member

  3. spongebobmama

    spongebobmama New Member

    Yes, I am finding so much help from everyone and I did answer your letter,Julie. I work all week as an old RN for a very demanding but thankful quad. Come Friday,I'm dead, but I do get to take a nap for 3 min each day. I've learned to cat nap. I set the alarm and my brain knows not to waste one second. I wake up feeling pretty good. My client knows I have Fibro and is pretty understanding. I want to retire soon, but actually he gives me a good reason to get up and get going.Otherwise I'd laze around in my PJ's typing on this board. Thanks again Sharyn from Massachusetts.Talk to you next weekend :)
  4. zenouchy

    zenouchy Member

    Spongebobmama, welcome to our board! Your screen name is really cute. Wishing you well and glad you found us.

    Julie, you rock for welcoming new folks and in general.

    Welcome everyone who is new or "newish".

    Erika :)
  5. mightyoldman

    mightyoldman New Member

    Hello Everyone....this is my first time posting on any board concerning Fibromyalgia, so I hope I can add something and take away something I need to.

    I am a 42 year old male, undiagnosed as of yet, working on my second denial letter from SSDI, unable to work for these past two years and my wife and I are living in very difficult circumstances due to financial loss because of my condition, meaning we are mostly relying on family for help in that area.

    My mother was diagnosed with FM not too long before she passed away in 2008, she was misdiagnosed for about 15 years previous. So I was fully aware of FM and its affects for a good part of her diagnosis process.
    My personal experience with my own symptoms began in 2003, I was a long distance runner and began to feel extremely exhausted, where I was able to run 10 miles one day and then the next day I could barely get out a half mile, which is not normal for me.
    My Doctor put me on anti-depressants, but did not help overall.

    In 2006 I began to feel the severe pain in my neck and shoulders common with FM, but as of yet have not put these overall symptoms together with FM.
    In 2007 my Mother and I both agreed that I may have FM. We had much in common and discussed my symptoms and since then I have researched and researched, to build up my own confinence with owning my symptoms rather than having Doctors who do not agree with FM and for friends and family who may naturaly judge for lack of understanding.

    I do not have insurance, so my prospects of diagnosis is slim, I have seen two Internist in the past year, one of the doctors tested my ANA and found that I have Mixed Connective Tissue Disease, I personally question that diagnosis but do not deny the Positive findings in the test.

    One doctor prescribed me Gabapentin and I have been on that for 1 year.
    The other doctor last month double that dosage and precribed me Adderall.

    My overall symptoms are about the same as everyone elses, mostly it is the fatigue that I find troubling, my whole life is turned upside down, depression is severe, pain and stiffness are frustrating but not in comparison to the fatigue and also the sleeping problems.

    I am a Christian and I am finding it difficult to become productive in reading and praying and controlling my temperament due to extreme stress, but not explosive, just normal uncontrollable displays of the inability to deal with situations that I would normally be able to deal with.
    My wife understands and is very patient with me when I have to turn down outings with her and even missing church, mostly due to fatigue and embarrassment of walking slowly and sometimes unable to stand for a period without holding onto the chair in front of me.

    So....with all that said.........HI!!

    You all sound nice and I really don't know what else to say that you haven't heard, maybe with the exception of having a Male point of view, which I can offer quite readily.

    Blessings to you,
    mightyoldman (aka...Larry)

  6. earthdog2000

    earthdog2000 Member

    Hi Larry!

    Welcome, welcome, welcome to Prohealth and this fabulous message board! I have been here for about 10 years and let me tell you it is the best site ever for those of us suffering from all of these DD's (short for da#m diseases)! You have come to the right place and will find a lot of support, advice and a lot of very caring, compassionate and wonderful people here! I can't say enough about how it has helped me through the years! It seems like no matter what you post or reply to you get some very insightful info and a will make a lot of new friends here. I find that the only people who can truly understand the most are those of us suffering with our same health problems.

    It sounds like you have really been through a lot in the last 8 years! I am so sorry that you are suffering and having to live this life that is sometimes so very hard to handle. I have to say though that many of us through sharing have gotten better just by help from people on this board. Please feel free to share whatever you want to and to reply to other's as well. I find that sometimes just reading someone elses posts I learn something new every day! It also helps tremendously to post something yourself as you will usually get many replies!

    It sounds to me like you DO have fibro as do many, many others on this board. A lot of us, including myself have CFS or Chronic Fatigue Syndrome as well as a host of other DD's. Would you mind sharing what your health concerns or illnesses are? If not, that is totally up to you and your comfort level! It sounds like you have a very wonderful wife and are so very lucky to have her. My hubby has been wonderfully supportive to me but at times very frustrated. It's hard for our spouses sometimes as it sometimes make them feel helpless so it is good to tell them how very much you appreciate them. When I am having a fairly good day I try to at least cook dinner, do laundry or just run an errand or two and my hubby really appreciates! If you cannot at this time do those things then chances are if you find the right drs., meds or supplements you will get better. It really depends on what your diseases and or illnesses are.

    I too am a Christian and feel very fortunate to have such an awesome church I can go to as often as I can. If I cannot go I have a little "spiritual" time in the evening once or twice a week and then I read a little of the bible, pray and journal. Journaling is so great as it lets you vent and write down your emotions, feelings, frustrations or whatever and always makes me feel better. I also write poetry a bit for family and friends to show them how much I love them and appreciate their support and they love it!

    I am also in a very bad place financially and totally sympathise with your situation. If you own your home you may qualify for " The Making Home Affordable Loan Modification" and it will cut down on your mortgage payments. Ours went down $400 a month! We also went to Consumer Credit Counseling Services and got all of our credit cards and loans cut down considerably. Just some food for thought. You are so very fortunate to have family that are able to help you in this time of need as we do! Sorry this was so long but I am bipolar too and even with meds I tend to be long-winded at times and write "short novels", lol! (laugh out loud)

    I am so happy to meet you and hope to hear from you soon!

    Faith, Peace and Comfort, Julie :)
    P.S. Thanks so much Zenouchy for saying that I rock for posting this, you totally rock too and I really appreciate you!

    [This Message was Edited on 08/16/2011]
  7. Mikie

    Mikie Moderator

    What makes this place so exceptional is the generous sharing and caring our members provide. Everything which has helped me over the last 11 years I've been coming here is something that I first learned of from our members. I'm glad y'all found us.

    Love, Mikie
  8. megohawaii

    megohawaii New Member

    I am so happy and relieved to hear that earthdog2000 was able to qualify for the making Home Affordable Loan Mod plan and Credit Counseling. Really good info in these hard financial times, especially when we are all dealing with such high health care costs. lol
  9. mightyoldman

    mightyoldman New Member

    Wow...a few nice responses and some good advice, thank you for the welcome.

    Sounds like I am not the only one experiencing some desert life.
    I know you asked for some of my health concerns and I forgot what I posted earlier but I would be happy to share them.

    I have researched diligently FM and CFS, and found that I fit the FM criteria best.
    My symptoms have reached back to 2003, but I would have to say that 2 years ago it became unmanagable. Widespread Pain, literally all over, and when the barometer is going down then I can feel it becomes the most painful.
    Stiffness usually accompanies the pain in equal measure.

    So I save the best for last, "the fatigue".
    This is what I call the kick in the butt factor, it takes the life out of me.
    I used to be able to run 11 miles, and now sometimes I can barely walk around at Costco's with my wife.
    My mother was diagnosed with FM a year before she died, she had been misdiagnosed over and over for 15 years previous.
    Her doctors put her on so many meds for every single dang symptom, that our family believes that is what took her in her sleep.
    Aside from the believe that God has a set time for everyone of us, and knowing the pain she was experincing with FM and Diabeties and Back, hip, and knee surgeries, knowing where she is right now is what brings me peace about it.
    Just yesterday, I was speaking with my younger brother and he asked me if I was "Turning into Mom?"....well in some ways yes, I now feel what she was feeling.

    Depression is another kicker! This is the most difficult to deal with. I remember enjoying many things, like photography, drawing, I even write poetry too, something that I have been doing for the past 20 years. I love Autumn and a cool rain, and a good movie. Now I can say that those things are out of reach right now.
    My wife and I don't own a home, we have been married less than 5 years now, and 4 years ago we put everything in storage and managed Retirement communities where we lived on site, when we left that job to pursue working together in the Insurance industry, mainly so we can have the opportunity to have a home and go to church on sundays, which is something we couldn't do before with the other job. Then not long after than, the stresses of finances and having to live in a temporary housing hotel for the past 2 years and 8 months and debt and so much more. You name it, it robs.
    The insurance jobs didnt work, and I cannot find a job that I could do even on the side without my condition affecting my work load. I have never done a job that I couldnt say that I am able to give %100. I have no idea how to approach a job now like this.
    I was going to a support group here in my city, but for those of us who are on the dark side of this thing tend to be as honest as we can, but without burdoning too many people with all the details. We had a woman who was on the Dark Side, she was honest enough to reveal that she is very depressed and the only comfort she had was that she was going to die. The group all basically tried the "please don't, your too important" approach, but secretly I felt that I too shared that same outlook. Even as a Christian, the weighing of heaven and the pains on this earth seem to be a pretty rediculious, unbalanced no brainer. lol

    Well,this is getting too long here... I tend to chase rabbits when I write, but like you Julie, my mind shuts down too,

    Thanks again,
  10. curlycreek

    curlycreek New Member

    Hi all,
    I'm new here. My old life went away 7 years ago, replaced with - well a body & mind that is like an ill-tempered toddler. Same as you all: pain...pain...fatigue...body that does not mind my wishes. Yes I want a miracle cure. The best I have is a strangle hold on hope. Hope keeps me moving forward through the maze of daily life, the medical community, the others who have no clue what we deal with. Hope keeps me from killing them or verbally nuturing them. Lol from the Pacific NW.
  11. earthdog2000

    earthdog2000 Member

    Hi Larry!

    Glad you replied back and shared so much! It's so much easier to help one another here when we know more about each other! Like I said it REALLY sounds like fibro, all of the classic symptoms. If you decide you want to get diagnosed maybe try a pain mangement dr. or an internal medicine dr. I was dx'd by a pain managemant specialist/acupuncturist and then my internal med dr. took over after that. I am truly blessed to have her as she is well versed in FM and CFS. She has many patients with both of these diagnose's.

    I was diagnosed back in 1999 with the CFS then in 2001 with the fibro. It truly has been a battle as I worked 30 hrs. a week all of those years for the school district until this past April. I have applied for disability through my job as well as SSI and should find out in the next few months. I'm trying not to stress about it and just think positive but sometimes it is very hard esp. financially. I have been very busy even though I'm not working with paperwork, phone calls, emails, faxes, etc. just to get through the disability processes and in getting all of our bills down to a managable state! Whew!

    If you can get diagnosed with the fibro maybe you can try to get disability at least and try to work an easy parttime job while you are waiting to qualify. I know you said you can not give a job 100% but maybe you can get one "helping" others. Working on a hotline, a job on the computer, helping in a elderly home or in a hospital. As long as it is not physical would that be a possibilty? I worked while I was sick for 12 years because I HAD to and would come home every day and nap. Then I would sleep 10-12 hours on the weekends and would be only be able to do laundry, some light house cleaning, making the "occasional" dinner and my hubby did the rest! Luckily I did'nt get REALLY sick until about 4 years ago and had summers off so I muddled through somehow the last 4 years. I had a "breakdown" in April and became somewhat manic and extremely depressed and that's when I was diagnosed with Bipolar II. I realized then that I absolutly could not work any longer no matter what! Luckily my psych is wonderful and between lots of therapy and the right meds I am doing much better!

    It made me cry when you said that you have been on the dark side even though being a Christian because I could feel your pain. I was very close to that feeling myself. I found a new church that is more spiritual than religious and found God again and a 2nd "home". I hope that you are not feeling as depressed as you were and that maybe you are able to go to counseling or therapy as it truly saved me! I think I cried my way through the first few months since I've been off work and then started working on ME! I journal a lot which is a wonderful way to vent and I write poetry to show how much I appreciate those I love. Keep up the poetry and find something else that helps you feel better in your soul and I think it will help you to feel better at least inside. When you feel better inside it seems to help the physical pain and fatigue, at least for me.

    I am so happy again that you found us and hope you stay as it just gets better and better being a part of these wonderful people on this msg. board! Well, since I tend to write short novels at times I am getting a bit tired so I'll say goodbye for now. Keep your chin up as my mom has always said and I hope you feel better real soon!

    Faith, Peace and Comfort, Julie :)

    P.S. In rereading your original post I saw that you had said you were already seeing an internist. OOOPS, fibro fog,lol![This Message was Edited on 08/18/2011]
  12. earthdog2000

    earthdog2000 Member

    Hi and Welcome!

    I'm so happy to see that you found us! So sorry that you have to deal with these awful symptoms! Do you have fibro or CFS? Most of us here have one or both as well as a host of other DD's ( da#n diseases) so we can sure relate. You came to the right place! There are so many caring, kind and truly wonderful people here and I hope that you enjoy! It sounds like you are a positive person as I and others on this board are and that alone will get you better. Tell us more about yourself if you would like to and feel free to post or reply. One of the things I love about this message board is that it moves fast so you can get replies pretty quick. Again, welcome and I hope we hear from you again soon!

    Faith, Peace and Hope, Julie
  13. curlycreek

    curlycreek New Member

    Thanks for the big warm welcome Julie & community,
    Do I have FM or CFS? I spent $$$ & the 1st 4yrs testing to eliminate known named disorders/DD got to the end of things with accepted treatment protocols, then gave the no go for more testing & worked with various symptom reduction methods. My Dr.s tend to be of the belief giving "it" a name isn't on the top of our check-off list since I was foregoing SSI. Now however, the university that handles most of my care has created a small clinic for us. So, I may revisit this to help stay current on research.

    My favorite label was "crazy" since it liberated me from taking responsibility for my actions. Ha ha
    I will be posting my learned tips for daily living, my blunders, pharmacy experiences, etc...

    So for all of us out there who have been told it's all in our heads, o.k. sure, now give me some d#nm opiates right f#*cking NOW! Or sedate me, put me in a padded cell-no worries, it's all good.

    Oh how I've been around the block. And the stories we can tell.

    A shout out to the new arrivals to h*ll in the hand basket: persevere, ask lots of questions, cry (it releases endorphans), research, burn the guilt in the burn barrel (this is nothing u asked for or deserve), and you are not alone. This is a good safe site. Good people & hey they are not family.
  14. mightyoldman

    mightyoldman New Member

    One thing that I am trying to do with the details of living with this DD, is to manage the details, and try to put them into context and share them appropriately. I believe that comes with time.
    To be able to comprehend it, to accept it, to defend it, to advocate it, and to live with it.
    These are all things and much more that have an underlying frustration for me right now.
    In a nut shell, I have had symptoms for 8 years, had a name for it for 4 years, began to experience the worst of it for 2 years, been in denial of the loss of who I used to be and my abilities for the past 1.5 years, and began the long path of diagnosis for the past 1 year.
    I have seen three doctors total for my sypmtoms, no more than two times each, (not including the SSID jokes they sent me to), with no insurance to afford any real testing with the exception of my church helping to pay for me to see one doctor who said I had MCTD and when I shared my symptoms and to explain how the Prednizone didn't help me, he sat in his chair saying "Huhhhh....huhhhhh...uh huhhhh."
    I have read many of your posts here on this board, and can see the overall frustration that I share in your words, the journey never seems to be complete for anyone. I see the loss of self in so many people, and then the discovery of a new self in many also.
    For me at this point, it is the dying of my old self, and the blurry images of what appears to be the new self emerging.
    I am on a mission to look upward, and not so much inward. As an introvert, looking inward has been a strength at times, but mostly it has been a curse. I feel the isolation that I somewhat craved turn into double isolation that I cannot escape.
    Looking upward meaning, submitting myself to Gods will. As a believer I know without a doubt that God has a purpose through it all, not just for me but for my loved ones as well.
    My mission field is a litteral minefield. It's not so much that I have been told that I am crazy or its all in my head, because I haven't seen enough doctors or told too many people how I suffer in order to warrent their various ignorant replies...yet!

    Thanks Julie for your responses, and prompt too.
    (My name comes from a song that I chose for another forum that I belong to which is a band that I have always enjoyed, it kind stuck, plus it is how I feel...ha!, I wanted a Dan Fogelberg song that I have always used, Dan is my favorite artist, his passing was as strange reality at the time)
  15. earthdog2000

    earthdog2000 Member

    Hi again!

    Just wanted to reply back again and say thanks for sharing and I hope you stick around. I would love to hear some of your stories you talked about and certainly have more than a few of my own,lol! You're so right about the things we need to do to stay sane with all of these DD's. I too ask a lot of questions, do research, cry a lot when I'm frustrated or angry and have learned to let go of the guilt. All of these things are not the easiest to do at first as a lot of us tread lightly at first. The biggest one for me that helps is to cry sometimes just out of pure anger at these friggin diseases! Then I sit down and get on this board, research, journal, write poetry or just make myself go outside and enjoy nature! This is a good safe site,curlycreek, you are right. It is a LOT easier for us dealing with all of this to talk to other's who "get it" here on this msg. board. So glad you found us. Hope you're having a "good day"!

    Faith and Peace, Julie
  16. earthdog2000

    earthdog2000 Member

    Hi mighty!

    So good to hear from you again! You are so right about living in denial. So many of us do that in the beginning then start to muddle through.....There is so much info on Prohealth alone and I try to read most of the articles as it does help. To know that there are scientists and doctors still doing a lot of research really helps! I know what you mean about being a bit of an introvert and it sometimes making it harder. When we live "inside" ourselves I think we tend to dwell a bit more and keep things to ourselves. You are very brave to come hear and share your story as I know it is hard at first.

    I found when I was dx'd with fibro and CFS that the only person who understood was my sister who has these DD's too and my husband whose mission was to find out more about it. The first thing he did was read the 1st book I bought called "Fibromyalgia For Dummies" esp. the chapter about "Helping Somewho you Care about Whose Hurting". He also got me on my first round of vitamens and supplements and started juicing for me about 2-3 times a day. He found Jack La Laine's Juicer and book at a yard sale for $5 and the juicing has helped me a lot! Since then I have learned much, much more about fibro and CFS and continue to learn daily. I was dx'd in 1999 with CFS then in 2001 with fibro. A pain management/acupuncturist dx'd my fibro and I even had acupuncture back then which is wonderful! Too bad my insurance does'nt cover it anymore!

    I love your name and where it originated from! I too am a Dan Fogelberg fan. My name is "Earth" from my astrology element", "Dog" from the Chinese Zodiac" and 2000 from the time I first started getting on the computer and eventually it led me here! BTW, it's very hard for those who don't have insurance do get a diagnose's since they sometimes have to go to more than one dr. to get dx'd. I believe that since your mother had it and you have the same symptoms that you do indeed have fibro and should just follow the path of research on that subject. There is a lot of info, research and help here on Prohealth and I have learned SO much here!

    I also believe that even though you say you are "introverted" you will find a way to share with family and friends eventually. Especially with your faith and love in God. With the help of God I was able to return here after a long absence. The loss of a dear friend that I met here is what drew me away. I have accepted that she chose the path that she did with drugs due to depression although it is still hard after 4 years.

    Thanks for being here and I look forward to reading your replies and posts and yes, it does help to get a mans perspective sometimes! Take care and I will "talk" to you soon.

    Faith, Peace and Comfort, Julie
  17. rosewood56

    rosewood56 New Member

    I'm new here. I'm 54. I actually have not been officially diagnosed with CFS but since my daughter was born 26 years ago I have never been the same. I have to be very careful about what I eat, drink, even breathe! My energy is limited. My adrenals are pretty well shot partly due to trying to adjust to a very stressful yet part time job as the Office Administrator of my church. I'm adjusting - but at the end of my 4 hour shift, sometimes I'm exhausted. Much of the time I have insomnia and I'm sensitive to many foods and I tend to get "overwhelmed" easily. I take tons of supplements just to function. Thank God I don't have much pain. I'm lucky in that way!

    The most difficult thing that is weighing on me today is the loss of my significant other just recently. My husband left 17 years ago and in that span of time I spent several years on my own and I've had 3 significant relationships. All 3 ended because I could not keep up with my partners. The loss of this last relationship was the most gut wrenching of all. I thought this one was "the one" because he also had some physical limitations and we had a very deep, loving and "spiritual" connection. Because of lack of work here in the states he has been teaching English in China for 5-10 month stretches and the conditions are so challenging there that I am certain I would not survive even the plane trip! He is not even certain how he has survived the challenges but somehow has been managed, however he says that he would not want me there because he would be too worried about me. He is leaving again in about a week for 10 months and suggested that while he's gone we should "keep our options open" and finally after much angst admitted that he's been feeling "limited" with me. I've been with him for 5 years and would have stayed with him even if he ended up in a wheelchair. He obviously didn't feel the same. I broke up with him.

    I have limited energy but I have so much to give in terms of love, compassion, understanding, devotion, respect and patience. I know someday I will be ready again to risk my heart but I don't know how to find someone who would be willing to be with me unless they also have some physical limitations. I want to believe that it is possible for me to be in a healthy relationship.

    Do others have this issue? Are there single sites for people with chronic fatigue and other related challenges?
  18. earthdog2000

    earthdog2000 Member

    Hi there!

    I'm so happy that you found Prohealth and this msg. board. You are in a very special and safe site. The people here are very caring, giving and compassionate. It seems like there are always so many other's who have the same diagnose's, issues, illnesses, etc. so you should get a lot of replies. Please feel free to reply to other's as well as post because in doing so can help someone else and that is so special and caring!

    First I would like to say that I am SO very sorry about the loss of your very special relationship! I know just how you feel as I have gone through the same thing myself. I think almost everyone has experienced this at one time or another in their life. Yes, it is possible to find love when you are sick! It just takes a very special, loving person to understand. My hubby and I were high school sweethearts who broke up when I and my family moved when I was 16! We both married someone else, had kids and ended up divorced. I moved back here when I was 20 and at age 39 my hubby called me (he got my number through an old friend of ours) we met for coffee and within a week were spending all of our spare time together. It was truly love at 2nd sight! We moved in together in 3 months, bought a house together in 9 months and married after 4 years. We have now been married for 9 years and together for 13. He is the most caring, loving and compassionate man I have ever met! I was diagnosed with CFS a year after we got back together and 2 years later with fibro. He has "taken care" of me through the good and bad and even got me on a vitamen and juicing regimen right away! I'll admit that ours is not the perfect marriage as we have had our ups and downs but we have always known that we would spend the rest of our lives together. I truly feel that if it can happen to me it can happen to anyone! Don't give up but do allow yourself time to heal.

    It sounds like you have so much to give and I am sure you will make someone else very happy. By the way, I am also very sorry that you are suffering with all of the fatigue and other health issues. You will find a wealth of info, advice and research too here on Prohealth so take advantage of it, that's what it is here for. Well I'm going to say goodbye for now but would love to hear from you again so feel free to reply!

    Faith, Peace and comfort, Julie
  19. curlycreek

    curlycreek New Member

    Hey mightyoldman,
    I don't know if you live close to a medical university. 3 yrs into my DD I realized this was a long journey & I was quickly burning through my savings & wouldn't be able to work until this DD resolved to something I could manage. So I began transfering all my care to the university, which has financial assistance depending on income. They have a history of not turning hardship cases away.

    I too take gabapentin & adderall. I have to be really careful with the adderal, it can send me into very painful flares. I try to detox off it about 3 times a year for a month.

    I'm not sure if this can be survived with a great credit score. Mine tanked 4 yrs ago. That's so the least of my problems.

    Take care-Sally AKA curlycreek
  20. Mikie

    Mikie Moderator

    And, Julie, thanks for being so nice to welcome everyone. You are definitely our Goodwill Ambassador!

    We have so many challenges with our illnesses and it's nice to have a place like this to go to for understanding, comfort and info on what ails us.

    Our members here are wonderful, caring and sharing people. Everything which has helped me is something I first learned of here.

    Love, Mikie

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