| March 27th. 2005 I want to thank each and every person that writes to me. I will continue to add your stories, as I feel it makes all of us feel less alone. This is a new site, and I will be adding more letters, information and alternative ways of coping with this devastating illness. Please come back often. Thank you and remember. 'When Fibro Talks..You WILL Listen' Hugs 'N' Hope Glenda Kaye |
| 50 Fibromyalgia Signs
1. pain 2. fatigue 3. sleep disorder 4. morning stiffness 5. cognitive or memory impairment 6. irritable bowel 7. chronic headaches 8. TMJ syndrome 9. numbness and tingling sensation l0. muscle twitching 11. skin sensitivities 12. dry eyes and mouth 13. dizziness 14. allergic symptoms 15. mitral valve prolapse 16. heel or arch pain 17. brain fatigue 18. painful periods 19. chest pains, noncardiac 20. depression 21. panic attacks 22. irritable bladder 23. multiple chemical sensitivities 24. joint hypermobility 25. suicidal 26. personality changes 27. lightheadedness 28. disequilibrium 29. severe muscle weakness 30. intolerance of bright lights 31. alteration of taste, smell, hearing 32. low frequency, sensorineural hearing loss 33. decreased painful sound threshold 34. ringing in the ears 35. exaggerated involuntary rapid eye movement 36. changes in visual acuity 37. intolerance of alcohol 38. enhancement of medication side effects 39. intolerance of previously tolerated medications 40. severe nasal and other allergies possible sinus infections 41. weight change (gain) 42. muscle and joint aches 43. night sweats 44. heart palpitations 45. muscle spasms 46. Raynaud's-like symptoms 47. carpal tunnel syndrome 48. heartburn 49. difficulty swallowing 50. interstitial cystitis - AGGRAVATING FACTORS: overexertion stress hormonal changes premenstrual anxiety changes in weather cold or drafty environment anger depression alcohol - POSSIBLE CAUSES FOR FMS: genetic neurochemical dysfunction hormonal imbalance virus infection accident or trauma nutritional deficiency. |
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| Letters from Glenda's Fibro Angels
I was diagnosed with Bipolar disorder in 1998 and after 4 different psychiatrists I found one that was able to prescribe me a perfect combination of medication to hide my bipolar disorder to the outside world and allow me to go onto a normal productive life. I was at the top of my game taking the same prescriptions from 2001 until 2004 with absolutely no flare ups or relapses of the bipolar disorder which crippled me with depression or caused me to alienate everyone who cared for me when I had the mania part of my disorder including my husband. On August 24, 2004 it was all changed. I was T-boned in a car accident and received multiple injuries particularly to my neck, back and spine. I began physio-therapy after about a month and the pain was excruciated. The pain was traveling all over my body including areas that were not injured in the accident. I felt like I was fighting, every minute of every day to stay out of a depression. I was very upset that my once stable bipolar condition was no longer stable.; Everyday that I woke up my body ached to the point that even taking a shower felt like pounding with every drop of water onto my skin. I begin to sleep every minute that I was home alone. I often took 2-3 naps of 3-4 hours each per day. I was so exhausted and so sore. My legs began to feel like they weighed 200 lbs each and the muscles were so tight and hard it is like a Charlie horse that won't release. My doctor and my psychiatrist began ordering test after test. Blood tests, urine tests, nerve tests (I developed carpal tunnel), x-rays etc. I am lucky since I have known my doctor for 20 years and he knew that what was happening was definitely not normal for me.I was physically healthy all of my life. I was active and never had any aches or pains except for when I gave birth to my two children. My doctor began working with my psychiatrists to figure out what was going on.I am 38 years old and I was deteriorating quickly. I was no longer having any good days whatsoever and both doctors agreed that it was not in my head. I started develop conditions that they could test for or measure such as carpal tunnel, tarsal tunnel, hypothyroid, plantar fasciitis etc along with several other immeasurable problems such as bones feeling like they were burning, loss of strength in my wrists, headaches, forgetfulness, bruised feeling on palm of my hands and bottom of my feet, body twitching randomly, waking up in the middle of the night with my mind racing, flu like feeling most of the time, alternating sinus infection and sore throat for months at a time, gas, constipation, diarrhea, feeling more injured then I was from my accident. Feeling like a transport had run me over. My only time I felt okay was when I was laying down with my pj's on (flannel) with a soft pillow and a soft blanket. I am still not able to work since my accident and I feel worse now then I did then. My doctor finally said he is afraid it is Fibromyagia and he would have to forward me onto a hematologist.I am not ready to quit on my life. I wish I had some strength to overcome the symptoms and enjoy my family and life once again. Thank you for your story. I no longer feel that I am alone. Sue |
| Hello Glenda,
I want to thank you so much for your web-site. I came across your web site by accident, because I was looking to maybe make some friends online. I got sick with fibro about three years ago. None of my Doctor's believe that Fibro exists. They all say it is caused by emotional problems. I didn't get depressed until after I got sick. I don't believe them. I worked for 32 years and for the last ten I was the Director of a non-profit agency. I was an active participant in life, I no longer am. Since I got sick I lost all of my family and friends. I couldn?t imagine that almost everyone would run from me when I couldn't be the caretaker anymore. I almost cried when I started going through your site. I am sorry for your pain, but am thankful that God has worked through you to create such a compassionate site. I had my thyroid radiated about 5 years ago and I am a diabetic. I miss life a lot. I take pain medication that helps me to at least get out of bed sometimes. Most days I am just home alone. God Bless you for being here. I feel so not alone anymore. I couldn't believe how you described so many of the symptoms that I have. My prayers are with you. Patricia A. Whitford 11/11/04 I have had this cfs and fm for a couple of years but the flare ups would be maybe 2 to 4 days and then is would lay dormant . Now I am into my 3 month and yes have been check for everything you can think of. But the swelling I get can show up in a different place every day. It can be very painful especially the swollen ankle I had the almost the 3 months the doctors didn't have an idea what it was These swellings have been coming up in various places and sometimes they are red. Has anyone out there with fm have these symptoms? I do have all the other classic symptoms. Desperate to know. M More from M Glenda, Thank you for replying. I live part time in Canada and it is very cold right now. I usually go back to AZ. till Apr. and leave by October but because I have been so sick we haven't left. We drive home because we have two dogs. My husband has decided to fly me home with my Mother who has been a God send that will be this Monday. I have been to so many doctors and when I get back to Az. I am going to a Fibromyalgia specialist. In September I had a bit of stiffness and hurting in my tendons at the back of my leg well after a few weeks I could put my foot down the ankle was swollen and very painful they thought I had a blood clot but didn't It seem to be in the tendons and muscles and very sore. Well that has been going on for over two months. The good news is the swelling went down on its own now both ankles are hard to get going in the morning. Both my arms on the inside where the tendons run are so and make it hard for me to use my hands. My whole back is tender but doesn't hurt till someone tries to hug me. My neck gets so in the front if I don't hold my neck straight. I was told I have a thick esphoicus. |
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| Hi, Glenda,
Just discovered your site and it is so beautiful! The angels caught my eye because if not for them I'd never make it through the day. I contracted Fibromyalgia about a year after I fell on my head at work in July 1996. Doctorspoo-poo'd me for over a year, tried to tell me I just had a "little whip-lash", sent me home after making me feel like I was just there for a little attention. When I told them I was in a lot of pain and it wasn't getting better it was getting worse they would roll their eyes and actually look irritated and bothered! ...How dare I question their wisdom and authority! Finally hired an attorney, etc., etc., who sent me to a doctor in a large town who was dumb-founded that no other doctor had run me through an MRI. The MRI showed that I had been living for over a year with 3 herniated cervical discs that had of course gotten much worse during the untreated year.........Finally had two of them fused. The surgeon didn't want to fuse the one that was the least damaged because he said I would have very little range of motion left if he did it. I had many other injuries as well when I fell that I had suffered from without treatment and therapy to my back and complete right side that still plagues me even now, 5 years later. Finally did receive a little (token) therapy through workman's comp but of course they want to get rid of you asap. Did go back to business/computer school but within 6 weeks had reinjured my neck to the point of collapse one day(a year and a half ago) from the pain and stress. I couldn't look down at the desk but forced myself to do it because I was determined to rehabilitate myself and get back to work. Am now trying to convince a judge that I somehow injured my neck and need that third disc looked at (or the broken fusion repaired..we actually don't know what the problem is but I'm in constant pain from that as well as trying to deal with FMS and can't get the powers that be to do anything but push paper work and red tape around. But if I thought all that was bad I didn't KNOW bad until one day a year after my accident, I woke up with the worst I'd ever had! I couldn't even breathe without wanting to scream! Every breath I took was torture just from the movement of my lungs within my ribs....I felt like I'd also been hit by a truck! When I told one of my doctors about it a month or so later he said "Well, it sounds like Fibromyalgia to me but I don't know much about that. It's a new thing...one of those garbage can conditions." So what I know about it I've had to learn on my own. I don't have time here today to go into the nightmare I've had with Fibromyalgia the last 4 years. I'm just here today searching the internet looking for help. Apparently like most FMS sufferers, I too, was always three women and a man...all my life. I had and raised two sons alone even though I had a husband around most of the time. Not only did I take care of mine, I took care of his 4 and he was a bigger kid than all of them! Alcoholic to boot! We were both professionals and lived a very active life in the community and school (at least I did, he was always too busy watching TV to even mow the grass), I have (or rather HAD) many hobbies and interests, loved to travel, etc. I've been divorced for 12 years, finished raising my sons alone, worked 18-20 hr days and was all prepared to work until I died. Had a great career and loved my work. NOW I do well to get out of bed in the morning on a good day. In the midst of an FM attack when I'm in my FM coma (what better description is there?) I hurt so bad all over and everywhere else and am so totally out of it that I burned myself a few months ago (another story) --third degree burns across my chest --&ammp;nbsp; and didn't even know it. When I came out of my "coma" 5 or 8 days later, the horrible burns had become infected...oh, what a nightmare! and a story for another day! For I am here today to seek help from you or anyone else who can tell me what we have to do to be recognized as DISABLED? I live in Oklahoma and have applied for Social Security Disability 3 times only to be turned down for the third time yesterday. I'm at my wit's end but they keep saying, "Well, just because you have some pain doesn't mean you aren't able to do the job you always did". I have sent them 20 pages of literature on FMS and they keep sending me back this assanine form letter telling me I'm fine to go back to moving furniture, climbing ladders to hang heavy draperies and heavy strips of wet wallpaper, get down on the floor and up on ladders measuring, etc., etc. every day plus all the other headaches and details of running my own business, (I'm an Interior Designer/Decorator). Excuse me, I WAS an Interior Designer/Decorator. I will never have the brain again to put a 3 course meal together without burning it and myself let alone design the interior of a home and decorate it even with a whole staff of assistants. BUT I cannot seem to get that through the heads of the people that are in control of my life these days: doctors, lawyers and Judges! TODAY, at this moment, I'm at this computer trying to make sense but by tonight or tomorrow I may be a glazed over zombie again. So is there a letter out there somewhere from some doctor or IS THERE A DOCTOR somewhere that will help people like us. There is absolutely NO WAY I can go back to work, there is no way I can function as anyone capable of performing any kind of work or any job I am aware of, I mean, how in the world do women with FMS support themselves!? Shouldn't there be some kind of help or agency that we can call or contact? I simply cannot go on without any income, borrowing from parents, and Peter to pay Paul...this is nuts! Thank God my house is paid for or I would literally be out on the street! I've always lived well and never had to learn how to live without money....how is that done???? How do you buy toilet paper, bath soap, laundry soap, toothpaste? I've had no income in so long I'm living in rags and walking in hand-me-down shoes - a situation I never dreamed I'd ever be in. If anyone out there knows how to get past this Social Security Brick Wall idiocy IGNORANCE, PLEASE let me know. I just can't take much more of this and am absolutely NOT going to be a burden to my children. Sorry this is long! Emma *************************** I am newly diagnosed. I have pain, RLS, low seratonin,IBS, I'm learning to stretch, the Drs are nice; except they don?t really hear me. The fatigue is overwhelming and the pain unbearable. Good news-I?m old so how long will this last? I know there are lots of you out there. What do I do now? Larc *************************** Hello. I just like to say I liked your website. It is helping me with getting my online friends to understand Fibro a little better. I have had Fibro since this June. Along with Chronic fatigue, GERD, TMJ, Sensory Integration dysfunction, spinal muscle atrophy, chemical depression, and CRPS type 1. It is basically a living hell. I am expected to do school every day, because they don't believe it is a good excuse to miss school. So I am throwing up blood in every class, sleeping in classes, basically wishing to die there - in so much pain I can barely see, my foot is throbbing and I just want to bash it up against the wall to make it stop hurting but I know that will only make it worse, I go insane. A few times I have had meltdown from the SID, where I go into flight/fright/fight and end up on the ground looking like I'm in a nervous breakdown. My rheumatologist will not officially diagnose me with it - I have ALL the diagnostic criteria, there's proof its not psychological, and all the other doctors treat me as if I have it. But him? He just says I can't be missing school. Doesn?t realize I am in extreme pain every second of the day. My life sucks so much, I used to have so much fun, doing youth group, I got 4.0 GPAs, I was having an awesome time. But then I get this, now I am constantly depressed, in extreme pain, with no friends left, being constantly abused humiliated and embarrassed, and its just so tough to deal with. I really wish I had someone here as a friend to talk to. My life is going to be extremely tough, considering I'm only 16 and already have it for life. I don't know what kind of job I could get, mostly because I am EXTREMELY sensitive to ALL sensory stimuli; it drives me up the wall; I could have a breakdown in the groceries tore from all of it. I have to go sleep some more ..Insomnia + fibro quite a combo lol...talk to you later, |
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| 02/11/2007 I have received so many wonderful letters and will add them as I can. Thanks to all of you that have shared you stories, thoughts and feelings with me. I will add more as they come in. Hugs 'N' Hope Glenda Kaye (CCsLilSis) |
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| When Fibro Talks.. Signs of FMS and Letters from 'Fibro Angels' |
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