Welcome to my nifty Dreambook, a free guestbook service from New Dream Network and the DreamHost!If you have a minute, please add your entry to those below by signing my Dreambook!
| Name: | Jerri Libert |
| E-mail address: | jlibert@indiana.edu |
| Comments: | My son needs help. Please send the names of physicians knowledgeable about CFIDS who will take new patients. |
| Name: | Cort Johnson |
| E-mail address: | phoenixcfs@gmail.com |
| Homepage URL: | http://phoenix-cfs.org |
| Comments: | Beautiful intriguing site Mark! Thanks! Keep up the good work! Yours truly, Cort (phoenix-cfs.org) |
| Name: | Joy Lynn Walker |
| E-mail address: | Jwalker8869@yahoo.com |
| Name: | valerie |
| E-mail address: | ladybug20_2@yahoo.com |
| Comments: | Hi. My story is alot like most of yours but I was diagnosed 14yrs ago. I am only 29 and a mother of 6 I'm still looking for help to deal with this and find something natural for the pain and the energy boost i need. Try finding pain meds that dont knock you out and energy boosters that keep you going with out crashing. I cant seem to find either if someone can help please email me the information. And any spouses out there that deal with this .... some insight to my partner would be real nice lol he has been with me 6 yrs and still has the i cant see it its not real theory were working on it. |
| Name: | Brett |
| E-mail address: | geezmurphy@yahoo.com |
| Comments: | Please keep up the good work here as it's always nice to know I'm not the only one with CFS & FM for 17 years but it's also nice to see those that haven't and will never give up trying to move forward on both their own condition and the poor service the medical community at times has done. I will keep up with this site from now on.
Thanks again, Brett |
| Name: | christine |
| E-mail address: | clester3@earthlink.net |
| Comments: | Hello all. I was diagnosed with Cfids over 12 years ago in CA. I am now in CT and have seen so many doctors that I am unable to keep track of with one is for what. In CT they said I have Fibromyagalia. I have gone from one doctor to another by referral. I was on Bextra, and viox both were pulled from the market. The Doctor that perscribed them to me got upset with me when I call each time to tell him that I could not take them do to the gov. pulling them off the market, and informed me that if I didn't want to take the meds he recommends that he can't help me. My main doctor who was great moved out of state, and I am now trying to find someone else who will believe me. If anyone knows of a great doctor in CT please email me @ clester3@earthlink.net
Thanks Christine |
| Name: | kelly peters |
| E-mail address: | kellympeters@msn.com |
| Name: | kelly peters |
| E-mail address: | kellympeters@msn.com |
| Name: | linda |
| E-mail address: | bee2me78102@yahoo.com |
| Comments: | Hello...i was diagnosed almost a year ago with CFIDS after they ruled out MS....my neuro offered a free subscription to the MS Society print out....i dont know if ya'll will believe me, but last month it had a very tiny article about an MS-like disease which they are researching called EAE, or experimental autoimmune encephalomyelitis....read the article. It will freak you out because it is almost like reading the bible. They are finding that people with CFIDS are really afflicted with autoimmune encephalomyelitis which is an inflammation of the lining of the brain and spine, while MS is actually IN the brain and spine. The disease has every single symptom of MS, but your spinal tap comes back clear. I went to Yahoo and typed in autoimmune encephalomyelitis and CFIDS to get to the article. It really helped me to become knowledgeable and to help me survive on a day-to-day basis. I hope this helps, Linda |
| Name: | Sheri W. Morgan RN |
| E-mail address: | smorg0528@aol.com |
| Comments: | Hi to all...Story is like all of yours...long. I'm supposed to go thru the battery of tests this coming tuesday to help make the rule/out diagnosis of CFIDS. I was sailing along fine until about 2 years ago. Now if I can get out of bed and to work it is a shear miracle. This is from a person that has practiced nursing for 25 years and always worked 50+ hours/wk. Nothing is working. I can sleep for days in a row w/out waking except for an occasional nature call and still feel fatigued.
I wish my skin turned a tone of blue w/ regard to how bad I'm feeling and then those around me would know how bad I feel. You're all in my prayers. Please keep me in yours. Sheri |
| Name: | Janine |
| Homepage URL: | http://j9email@pacbell.net |
| Comments: | I'll be back to join in the conversation regarding CFIDS..I'm not up to the task presently.
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| Name: | Anne Hillebrand |
| E-mail address: | annehillebrand@bellsouth.net |
| Homepage URL: | http://www.FibroFix.com |
| Comments: | www.FibroFix.com is still all free, public domain.
Read all of this site. I was a mono, cold sore, EBV, CFS, also. Glad to help anyone who wants help. Anne |
| Name: | Jeannette Cheshier |
| E-mail address: | Victorianlace@joimail.com |
| Comments: | I have severe pain and have to take very stong pain meds, I would like to know if anyone has found something besides narcotics to treat pain, I can not take NASIDS, Prednisone, and tried Psy meds but had severe reaction to those, antiseizue meds which they used for off label pain made me very sick too, Thank You |
| Name: | Victor James |
| E-mail address: | cf_alliance@yahoo.com |
| Homepage URL: | http://cf-alliance.tripod.com/ |
| Comments: | Your CFIDS Insights is wonderful. One of our group members recommended that I check it out and I am very glad I did. If the CF-Alliance can help support your efforts, please let us know. We're an international CFS, ME, FM and related illnesses support organization. Thank you. |
| Name: | Myra Ammons |
| E-mail address: | ammonsm@jcschools.org |
| Comments: | I am suffering with this awful nightmare and have been for about 2 years. There are days when I feel I just can't make it through the day, mentally or physically. I have thought about disability, but don't know if it is possible. Any ideas? |
| Name: | BETH CAOUETTE |
| E-mail address: | beth.caouette@kuehne-nagel.com |
| Comments: | I havent been told if I have CFIDS yet but I have been diagonised with LYmme Disease Chronic Pain ,APLS ARTHRIS Lombar Spondylosis , MIGRAINS and Sleep Disorders. I was told of my Lyme in the Winter of 2001 and since then my life is a living HELL. I cant remember anything I cant keep awake at work I get home and I sleep till ?? then I'm up and down all night! The Pain I live with is unreal I average between 8-9 most of my days . My pain meds arent touching it at all, the doctors just up my meds every few months . I cant tell you how many drs I have been to and right now I run between 4 of them for different issues trying to find anything. The next move is to leave work and move south. I need help I cant try to keep my upper lip with out crying in my coffee everyday. |
| Name: | Sharon K. Rankin |
| E-mail address: | skrankin@direcway.com |
| Comments: | I have had CFIDS since 1988 and was on the fortunate ones to have gotten SSD. But before that happened, the loss of my job, caused us to have to sell our home and it has seemed like we have had a hard time settling in since. The home we sold was to be the home we were to live in the rest of our life. Little does one know how drastically things can change when something like CFIDS comes your way. It has changed just about everything in our life and thankfully, my husband has always been supportive. Anyway, you do not have to answer this. Spend a few extra minutes with your wife........ |
| Name: | Michelle Bradley-Kennedy |
| E-mail address: | SweetOceanBlue2001@yahoo.com |
| Comments: | My name is Michelle, I'm 42 yrs. of age, married and I also have CFS/CFIDS & other Chronic Illnesses. This is such a 'Fantastic' website & very informative. Five years ago I married my wonderful, supportive loving husband. Three yrs. ago I was dx with this awful disease. Many days & nights I cry because it's very frustrating living with constant pain 24/7, unable to do various activities that I once enjoyed, most of all unable to work any longer was such a devestating blow for me. For over 13 yrs. I worked in the Medical Profession helping the sick, now I'm sick...Having spent many days, weeks, hours searching for answers & seeking help from doctors, which is extreamly overwhelming & dissapointing. So much has changed in my life that I don't have the desire to participate in doing anything, due too the CONSTANT pain all over my body & joints. Everyday is a struggle, and I realize that it's important to NOT give up hope. My husband is a wonderful Friend, Companion, & also he's my Caretaker. As I type this the tears flow because there's so many people in this society, that aren't educated to what CFS is all about...
Thanks so much for sharing your website, it certainly has given me Determination, Inspiration, & Hope. Respectfully, Michelle |
| Name: | Linda |
| E-mail address: | lindajiler@comcast.net |
| Comments: | Awesome! Thank you for sharing & from such an important persceptive we rarely hear from. There's a great deal of comfort (mixed in with sadness & frustration) to go through your website saying "been there, done that."
I was first diagnosed with this DD (insert your choice of name here) in 1987 (Northern Cal & Reno, NV) 8 months after a horrible case of mono (for 3 months). I was again dx with CFS in 1990, 91, 93 under the 1988 CDC case defintion. I continued to work until I collapsed after a car accident in 1993. After a 6-month leave of absence I still wasn't physically able to return to work. I broke down & applied for SSDI in July 1995, after 2 years of being unemployed due to disability. Over 10 years later my case is STILL pending! I have lost everything! My current PCP doesn't put stock in CFS until it can be verified by testing. My insurance won't cover CFS & most of my co-existing conditions. SSA thinks I've manipulated most of my doctors as it is a diagnosis based on "self-reported symptoms." I would be dead now if wasn't for my husband (& caregiver) who believes in me & who understand & deals with CFS better than I do. Thanks to my husband/caregiver, my second Austrialian Shepherd (assistance dog) & websights such as yours for helping to improve my quality of life. A support system is essential for being able to cope with this DD. I too have a dream that one day I will wake up feeling refreshed after a good nights sleep, without any pain, brain fog, sharp as a tack and my fairy godmother telling me that I'm not in CFIDS hell anymore! ...and there goes a flying pig! |
| Name: | Suzanne Fairchild |
| E-mail address: | mischief_twin_1@yahoo.com |
| Comments: | I was diaganosed on Sept 11, 2003. I will remember that forever as the day my life changed.
Sometimes the pain is so overwhelming I wonder if it is really worth it. There are days I can't spell simple words that I have known all my life. I am also a single mom. I just don't always know how to go on, but go on I do. It helps me to find these sites and remember I am not alone. And most imporatnatly that it's not all in my head and I am not really just lazy. I do have to remind myself of that all the time lately. So thank you. |
| Name: | Rachel |
| E-mail address: | crossandink@bellsouth.net |
| Comments: | Hi all. My name is Rachel and I have been overcoming CFIDs for ten years now. I'm turning 24 and am still struggling through college, but God is really good cause I'm getting there! My case developed from the Epstein Barr virus which I had once at thirteen and again at fourteen when it developed into CFIDs. My symptoms are the typical flu-like stuff, swollen wrist joint, sleeping twenty hours a day compusively...at for about six months I saw only my parents and the doctor and couldn't walk from my bedroom to the kitchen table two rooms away. Slowly, I've been doing better, and now I have three other diagnoses to add to CFIDs. Just hanging in there one day at a time, sometimes moment to moment. |
| Name: | lisa |
| E-mail address: | lisamac520@aol.com |
| Comments: | Thank you Thank you Thank you I am speachless and in tears
15,000$ worth of we cant help you and heres the answer one smart surgeon and your site and a huge weight lifted off my very sore shoulders thank you |
| Name: | jeff |
| E-mail address: | taciturn88@yahoo.com |
| Comments: | Sorry. I'm at yahoo. not yaho. |
| Name: | jeff |
| E-mail address: | taciturn88@yaho.com |
| Comments: | Have had cfs since 1987.seems viral in nature. sore throats, feels raw from throat down into my chest, exercise intolerance, memory problems, chemical sensitivities, sometimes night sweats, overheating, alcohol intolerance. I do work. treat with supplements. very expensive |
| Name: | Jane |
| E-mail address: | janel450@yahoo.com |
| Comments: | Been part of this "club" for 5 years now. It's very difficult to manage a full time job, husband and 3 kids. Day to day can be hell, but my faith in God gets me thru. Family support is very low, but we have to keep chugging along, right?
Good luck to all of you! |
| Name: | Amanda |
| E-mail address: | abird33@aol.com |
| Comments: | It is nice to hear other people talk of their problems. I have finally been diagnosed with CFIDS after a year of questions. It hit me like a brick in the face. I went from being an active ballet dancer to someone who can hardly walk. It is very hard and I have never felt so alone. Keep chatting because if we stay together we will never be alone. Good luck to everyone. |
| Name: | Ron Reich |
| E-mail address: | email@cfscorner.net |
| Homepage URL: | http://www.cfscorner.net |
| Comments: | You have a good site that we will be adding to the revision of websites we are doing now.
Our site has changed a lot in the last year. We constantly revise and update. We have 3 major revisions we are working on now. I would appreciate you adding our site to yours. We currently feel the following is the best definition of our site now: “Chronic Fatigue Syndrome” is a serious disease that can create damage to the body, mind, muscles, etc. At the least, it creates a Chronic Immune Dysfunction. We, a husband and wife who have been disabled by CFS for over 15 years, created this site to share our experiences plus those of many others who have helped us by responding to our site. It includes research done on CFS/CFIDS/ME, possible causes and treatments (pro and con), CFS management, some websites that we recommend for additional research, and even miscellaneous medical highlights that we should know. Thanks, Ron Reich |
| Name: | Scharlene Silver |
| E-mail address: | Scharl.Silver@icon.co.za |
| Comments: | Have traversed this path for 8 years now. it challenges me on all levels; pysically, emotionally, mentally, and spiritually. have had periods of remission, and usually medical mistakes pull me back again. Do have a lot of info to share. |
| Name: | Catherine R. Lemlyn |
| E-mail address: | clemlyn@hotmail.com |
| Comments: |
| Name: | Angie Nantz |
| E-mail address: | starwish@cox.net |
| Comments: | I was diagnosed in January of this year, given a name to call the collection of syndromes I have been suffering from since 1986.... I was told about CFIDS, Fibromyalgia & in a few more months, Chronic Mypfascial Pain.
I had already heard the sentences of IBS, GERD, Hypertension, MCS, extensive environmental & food allergies, Migraines, Asthma... In 2002 I lost my gallbladder after months of begging doctors to help me. I have since learned about Facet syndrome, Lateral Epicondylits and the reality that you can have pain everywhere your body connects to itself, be it tendons, muscles, bones, ligaments... Add to all that the looks of disbelief from strangers you thought were friends yesterday. Accusations of being lazy and lying from family members, doctors and employers. I am now at a point in my life of days filled with pain of varying types, focal points and intensity. I am currently without income as the insurance company that I had paid every 2 weeks, just in case, has stopped my checks for the second time in 8 weeks. My STD is now 6 weeks behind while my records are being reviewed by an 'outside medical doctor'. I have been ordered to get my medical records to them 'right now' or we will cut off your checks..I complied and they found another reason to cut off the payments. I was told that a determination will be made by Wednesday of week 'x' only to be told that they were running behind....call back Monday. The next Monday I am told to call on Friday, the medical reviewer is running late. On Friday I am told that he is still not here, call again next Monday.... Being Ill is not for the weak...... |
| Name: | Tim Moore |
| E-mail address: | webmaster@disabilitysecrets.com |
| Homepage URL: | http://www.disabilitysecrets.com |
| Comments: | This is a great site and the work that went into developing cfidsinsights is a great contribution to those who have this condition. |
| Name: | Diana |
| E-mail address: | matt5@netnitco.net |
| Comments: | I have suffered with many of the symptoms associated with CFIDS but without a diagnosis. I am still going through with the doctor's the theory that, "It's all in my head". I suffer through MANY days with great pain. The only way I survive is through my faith in God. I truly need a name to my pain and am hoping that your information, given to my PCP, will open her eyes to get me on the road to recovery. |
| Name: | Mark Leavitt |
| E-mail address: | mark@leavitt.net |
| Homepage URL: | http://www.markleavitt.net |
| Comments: | Welcome to CFIDS Insights guest book.
I hope you enjoyed the site and found information pertaining to your situation. A new site is planned for the future, but between working full-time and taking care of my wife, I don't think I will ever finish. Mark |