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Hi, I just found this board today. I started going to Doctor's 6 years ago. I was always very active, nothing stopped me from going non-stop from 6 am till bedtime. Then one evening I was washing dishes and I felt like I hit a wall. It was an instant wave of sickening fatigue, out of the blue. I sat down and rested a while. I couldn't figure it out, thought maybe I was getting the flu. It didn't improve so I went to my Dr. who ran some blood work followed by, " I can't find anything wrong with you. You aren't as young as you used to be, it's normal to get a little tired." I told him this went beyond just tired. I continued to get worse and went back. He once again told me nothing was wrong but he thought maybe I was depressed. WHAT!? So he hands me a prescription and we are all done. I never did get those darn pills. I know my own body and I knew something wasn't right. Fast forward a few years. We moved and I found another Dr. He does all the blood work again and tells me nothing is wrong except OA which he said would explain the pain. He added I needed to get some exercise. I must have looked like he slapped me. My husband was with me and he was asking how I could do that when I was to the point I could no longer walk far and all I wanted to do was lay on the couch or stay in bed. The Dr. said Yes, she needs to do Pilate's. I just stood up and left the office. I went in the bathroom and cried when we got home. A few months pass and I make an appointment with yet another Dr. I felt too bad to give up. This time I lost it and started to cry when he was asking what was wrong with me. I told him I was so tired all the time, in constant pain, not sleeping and unable to even do my own housework. My bones and joints hurt. I had bad headaches, get dizzy and have trouble with concentration/memory and I would get so hot my face would turn red. I had gone through early menopause so that couldn't be to blame. I told him I had been made to feel like this was all in my mind and told I was suffering from depression. I added that yes, this problem depressed me because nobody could tell me what was wrong. I told him I knew something wasn't right! I told him I just don't feel like myself. I told this was not living. I said I'm in my 50's but I feel like I'm in my 90's, that is not normal. My husband told him he bought me a mobility scooter so I could at least get out and go with him to the grocery store. He checked me for everything that had been done in the past. He gave me a prescription for something to help me sleep...Finally he said he couldn't find anything wrong and sent me to an Infectious disease Dr. She ran test for Lupus, Lyme, Epstein-Barr Barr and sent me for a MRI of my head to rule out MS. She told me she doubted it was any of those. The results came back positive for Epstein-Barr which she said resulted in CFS. It took 6 years to get a Doctor to listen to me. It's like CFS is a dirty little secret that no Dr. really believes in. To be honest, I had convinced myself I had cancer. I figured it had to be cancer because I didn't think anything else could make you feel you this bad. I joined this group because I am praying someone else who has this can offer me hope that things will get better. |
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See what I mean Sweet Taters! About the abbreviations lol! I am so confused, but thankfully our dear Hannah is on top of stuff. LOL, my Fibro clouded head can't hold a thought sometimes. But anyways, welcome! And now I am gonna go pout because here I thought I would be the first to get to say hi and howdy! Guess I was just to long winded as usual too! Thank you Hannah for seeing things more clearly. I think I will mosey on over and see what other dust and fog I can kick up tonight. Oh wells, I try. Hahahahahaha! And Tater if I might call you that, this is what I mean by we enjoy making mistakes and sharing them. I wouldn't take my post down for the world right now because I just know someone will laugh with me about it. Hope you do hon, it won't be the first, nor the last time I stick both boots in my mouth. Over the years I have come to have a fond taste for manure! |
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| | From:  CyndyK2 | Sent: 10/9/2008 9:49 AM |
Hello, SweetTaterPie, and welcome to the family! : ) I see Hannah and Hissy have already made you welcome; Dee may have left on her cruise, and she won't be back for a couple of weeks, but the rest of the regulars will be in to welcome you soon, I'm sure. I am sorry to hear you've got CFS;that's not as common a diagnosis around here as FMS, but a few (un)lucky souls hnave been hit with both chronic fatigue and fibromyalgia; talk about a double whammy. Has your doctor suggested you try Lyrica yet? Many people who have fibro are having good success with it, and from your description of your pain, you might be a good candidate for it. Can't hurt to try, right? You might also try a high-protein, low-carbohydrate diet, see if that helps; if it does, it might indicate that you do have fibro. Go to your local library and check out Dr. Devin Starlanyl's books on fibromyalgia; she's an excellent source on the subject. Maybe you'll find something that turns on a light bulb for you that you can then go to your doctor and tell him or her. I wish you luck; meanwhile, you've always got friends here!
Cyndy
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Good morning, I had a rough night so bare with me. My spelling is really off these days and I often use spell check so people won't think I'm just stupid. My husband has become a pro at finishing my sentences. Example, Honey, I need some...... and he'll say Tea? For some reason I have trouble with words. My fonts on this computer are huge to help me see. For a week or so I've been in a worse fog and can't seem to think clearly. I was told I had fibromyalgia 15 years ago. My M.D. said he reached that by my tender points or something, I had been complaining about my aches and pains. 6 Years ago my life took a drastic change. It went beyond the fibro. It was almost like someone pulled the life out of me but I remember the very second it happened. From that day on my life as I knew it was gone. Each day got worse. It's like someone is holding me down, I try but simple things are no longer possible. Today when I got out of bed it took over an hour. I kept telling myself, you can do this, get up, get up, I can't, yes you can, get up, I can't. This battle goes on with everything I do. I didn't give up trying to get answers. I went from Dr. to Dr. while each insulted me telling me it was in my mind or I was just depressed. At one very low point I thought maybe the Dr's were right, I thought, ok, this is what insanity feels like. I stopped going anywhere. I could no longer read. My eyes bothered me and my concentration and memory were affected. I sat or layed with the TV on all day and most nights at 2 or 3 I was still awake. I fought to get sleep but couldn't. It was like I was too tired to sleep. I considered killing myself once. I figured I would take the burden off my poor husband and I wouldn't have to live with this anymore. Then I got a phone call and it made me reconsider. I finally told one Dr. that he would depressed too if he felt as bad as I do and nobody could tell him why. 8 years ago I was told I had OA which is Osterioarthritis. I have severe acid reflux so I take Nexium for that and for a month I've been on something to help me sleep. Sometimes it helps but for the last week it hasn't done too well. I also have a C-Pap machine I have to sleep with a facial mask because I stop breathing when I sleep. Finally I was sent to a Infectious Disease Dr. who tested me Lupus, Lyme and Epstein-Barr-Barr Virus. The test came positive for Epstein-Barr-Barr Virus which she said is now chronic and they have named Chronic Fatigue Syndrome. Last week my Dr. sent me for an MRI, the results aren't back yet. I go back to the Dr. next week.
Now about me, my name is Patti, I'm 52 years old, my husband is 58. I'm married to a saint. He is so loving and patient and I feel he's getting the short end of the stick on this deal. I have 2 grown children and 4 grandchildren. My son's wife is angry at me for the moment. I'm having a bad month and don't feel up to company. She wanted to bring the kids for a visit and I said it wasn't a good time. Not because I don't want to see my babies. I just feel too bad at the moment which I told her. Her reply to me was, I know how it is to feel bad, I get headaches. I thought, bless her heart and I pray she never knows what I live with. We live in the country in Texas. At one time we had lots of chickens for fresh eggs, we had dairy goats and horses. We only have 2 miniature horses left. The girls as I call them, keep the pasture eaten down and are so sweet. I could no longer care for everything. We have 2 fur babies that are cocker spaniels. They stay by my side day and night. Before I got sick I had a huge garden each summer and I would can and freeze almost everything we ate. We have apple and peach trees for jams and pies. I enjoyed my flowers and roses but they don't look so great this year because my husband just has too much on him to care for them. He works and takes care of this house and does most of the cooking. He never complains. Before I got sick I loved road trips, sewing, crocheting, reading and cooking. So that's a little about me. These days I lay in bed a lot or on the couch with the TV on to distract me. Thank you for the welcome. Patti |
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| | | From: CyndyK2 | Sent: 10/9/2008 5:33 PM |
Hi again, Patti! : ) I wouldn't be a bit surprised if you DO have Epstein-Barr; I've heard it's extremely debilitating and can take a long time to resolve itself, but it generally does eventually. I still think it might be a good idea for you to try Lyrica and see how you do on it. Many people with fibromyalgia are reporting wonderful results with it and as you may know, the "fibro fog" is a big component of the illness; it's not just pain, it's confusion and exhaustion, too. So you may still be misdiagnosed. We all know what it's like to have lost our "old" lives here; most of us have had to give up or scale back somewhere. I'm happy for you that your husband is one of the few that has stuck by his wife; you're a lucky lady. : ) Give him a kiss for those of us who weren't as lucky!
Cyndy
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Hi Patti, welcome to the group. I'm Debra, I go by tomcat here on the boards. I'm one of the assistants around here, though I haven't been around as much as I should be lately. It's nice to meet you but I sure hate that pain had to be what brought you to us. I can surely relate with what you're going through, so many of us can. I still don't feel like I have gotten an adequate answer as to why I continue to have pain and my last surgery was almost 10 years ago. It seems like if doctors can't give you an answer right on the spot, they aren't interested in delving any deeper. They just send you on your merry way. They just don't have time for us, it seems. I'm glad you have an understanding husband. I'm fortunate in that way as well, so far anyway. Once again, welcome to our group. I look forward to getting to know you better. tomcat |
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| | | From: Jen, PT | Sent: 10/9/2008 7:11 PM |
Welcome :) Sorry that pain has brought you here, but you've found a good group! I'm Jenn, one of the assistant managers. You can read about me under "meet Jenn". There's a wealth of information in the blue column to the left, and you can even post your bio under "members bio" if you like. Welcome again! |
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| | | From: AχPill | Sent: 10/9/2008 8:10 PM |
| Welcome to the group, Patti. I can't imagine what you are going through, but can definitely relate to your frustration, with the doctors saying you are experiencing, "depression," and that it is all in your head! Please, remember it's not all in your head. My health started to go downhill in 2002., I had just started taking a new medication, Zoloft - it is a antidepressant. Class of drugs called, SSRIs. Same as Celexa, Lexapro, Prozac, Paxil, and Zoloft (Click HERE for more information.) Within a week after starting the new medication I started to experience, twitching in my right leg. I contacted my psychiatrist, whom started me on the medication, he told me the twitching was normal, they will go away once your body gets adjusted to the meds. I trusted the doctor's advice, afterall, we trust our doctors, they went to medical school! Before long, the twitching turned to tremor both legs, and hands. I have never experienced this in my life. The reason why I was prescribed Zoloft, it was to treat the PTSD, at the time I was experiencing flashbacks of the abuse I endured years ago. So, my psychologist referred me to a psychiatrist. This was the first time I had been under the care of a psychiatrist...I felt as if I was crazy, but hey there are hundreds and thousands of men and women seeing a psychiatrist, we are NOT CRAZY. Well anyway, the tremor turned to the worse to where I was unable to walk without limping or dragging my right leg. I was so embarassed walking around the house, especially when my husband and I had company. Now, I was still living with my parents, then moved out June of 2002, moved in with my soon-to-be husband. The tremor wasn't as bad at that point I was still able to get around , (goodness I couldn' make my husband do all the lifting and moving the boxes in the house...lol) As time went on, the tremor got so bad my husband had to carry me throughout the house, such as the bathroom. When I had my monthly check-up with my psychiatrist, he saw how bad I was walking, everytime I saw him I used a cane, in fact, anywhere I went I used a cane, but the damnest thing about my psych he showed no concern on the tremoring. Anyway, eight months later, after making numerous of hospital visits in the ER, seeking for a answer "what" is causing this tremor. The majority of the attending physicans, dismissed me with a answer, "It's psychological." I told Chuck, my husband, I refuse to accept this!! I repeat over and over I'm not accepting this!!!" I was angry as hell for the longest time, and still do at times. So, I took my medical condition in my own hands, did research on the Internet. I looked up all the medication that I was taking at the time...looked at the common side effects, less side effects, and less likely. So, by the time I looked up information about Zoloft, a light bulb lit up! In black and white TREMOR. I told Chuck my discovery, he was grateful I found my answer. I stirred about it I quit taking the Zoloft, within two or three days the tremor STOPPED! I contacted my psychiatrist about the news...I couldn't believe it, he said, OH! By the tone of his voice he wasn't happy for me. Not much of a doctor, uh? Most doctors would be thrilled. The good news is, after being a patient of his for five years, I have been seeing a new psychiatrist for a year, I never regretted changing doctors! The good news about my previous psych he recently retired! GOOD! He was nothing but a pill pusher, he didn't care about his patients, in my book. Oh well... Patti, never give up even if you have to do your own research for a answer. Take your findings to you doctor's attention, if they don't hear you out, then fire that one, and find another doctor WHO will listen to you. Your pain is real! You will be in my thoughts and prayers. -Andrea |
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| | | From: Dan | Sent: 10/10/2008 1:19 AM |
Welcome to the group, Patti. Glad you found us, though not glad you had to go looking for a chronic pain support place. What you've found though, in case you haven't figured it out is a place where everyone has chronic pain. So we all understand what you're going through. Over on the left is a lot of information on chronic pain. Let us know if you have any questions, OK? Hugs and lots of love, Dan |
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Welcome your in the best group in town for advise. I have Lupus and Scleroderma along with Chronic Pain from 9 back surgeries and 1 Cervical. Pain alone from Lupus, Sclero, Fibro, etc., pretty much keeps me down. Of course the back to. My sister has had CFS for years and it took about 2 years to find it. She really just takes pain meds when she don't get sick off them and others and sleeps alot. She use to in the beginning get those Gamma Globin shots. It is a horrible illness like having the flu 7 days a week 24/7. Cher from Sonny and Cher has it and was in bed a year. Don't give up tho fight it and Cher has gone in remission last I heard. More and more people are showing up with having that. I feel so bad for you I know how my sister is. Hang in there someone else may be able to tell you more. |
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Welcome Patty to the group.....great bunch of people here...I have fibromyalgia and DDD....along with some other issues all cause pain .....the fibromyalgia kicks my butt sometimes and before pain meds I did exactly what you have been doing....laying on the couch in bed and walking HA!!!!I hope this doctor gives you something for your pain....well again welcome....................................................Dale |
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Good Morning! Thank you all so much. Except for getting online yesterday for about 15 minutes I stayed in bed all day. After dealing with this for 6 years I have names for each type of my days. LOL Today is a "Thank God it's not as bad as yesterday Day." Today I'll watch movies on TCM all day. It takes my mind off feeling so bad and pain. The funny thing is, years ago I hardly ever watched TV. I did love to read. If I try to read these day's I read one page over and over and still don't have a clue. I thought I was getting Alzheimer's for a while. I'm not on any pain med's. I can't figure out if it's worth it? I'd need to take them each day and I'm so afraid of building a resistance and needing higher doses and becoming dependent. I also have some stomach issue's and there are so many things that make me sick. Yesterday when I was laying in bed I was thinking about everyone with Fibromyalgia, Chronic Epstein-Barr and Chronic Fatigue. So many people have this now. I was thinking about how many Doctor's dismiss us and don't consider this a real illness. I wonder how long it would take for things to change if some of the people that 'Matter' in the way of changing things got this agonizing disease? It takes away your life, at the least the life you knew and loved. People have lost friends, their homes, jobs and spouses. We are often labeled as lazy, told it's in our minds or we are we simply depressed. Then you have the people who can't take it anymore and commit suicide. The Doctor's don't know exactly why we get it and they don't have a cure so they stick a label on it. It's a label with little respect to many. There are many other disease's do they know little about? Yet, they many treat us like we are making this up. Why would anyone want to live like this on purpose? I have a mobility scooter because my legs will no longer carry me far. My husband always insist I go to the grocery store with him. He feels I really need to get out of the house. So, a few times a month I get dressed and off we go. I can't you how many times people in the grocery store have made me cry with remarks. I always say a silent Prayer that they never have to endure this. And, I often wonder when watching people if they know how lucky they are? I took for granted that I could push that grocery cart through the entire store, and just doing the everyday things. LOL It only took 56 minutes for me to type out my ramblings and then do a spell check. Big gentle hugs to everyone. |
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SweetTaterPie.. hmmm. Now I lost my train of thought - and I'm hungry. Oh yeah! Welcome to the family. This is a good bunch of folks. You can let down your defences here and be safe. I'm Thrashed Arms And Hands, a beat-up biker from Utah. I'll give you the guided tour. If you look down the hall you'll see the kitchen, game room and solarium. Further down is the enteretanment center and across the hall is the armory with the turret mounted squirt guns. Back here are the restrooms for those "bio-breaks" and around this hall is the pool, jacuzzi, massage tables and bungee cord launch platform. (We had an indoor shooting range but Tomcat and Hanna got a bit carried away with the 50 cal stuff and shot out the back wall, sooooooo the cops won't let us use the back patio to fire rounds any more.) The heli-pad on the roof DOES NOT double as a diving board (Shadow) some insurance thing about risk assesment, liability, and providing a bad example to the neighbor kids. No-one still has claimed the green-ish furry stuff in the back of the fridge. We had reports that it was moving under its own power and now several of the twinkees, a jar of pickles and a cornish game hen are missing.  I think we've got the whole fire alarm issue straightened out. We found it was rigged to go off when Dan sat down on the can. (I suspect it was Avery but all we saw on the security video was some scrawny dude in a cowboy hat bolt down the hall with a roll of wire and a drill motor laughing uncontrollably.) The odd burning smell was discovered to be an errant hot pocket pepperoni meal that somehow got dropped into the back of the oven. It was reduced to a tiny lump of charcol around two inches long yet somehow one of the bits of pepperoni remained unscathed. Wierd huh! You missed last weeks blindfolded chain saw juggling competition. It was a real squeaker but Cyndi won after Jen's saw ran out of gas. Dale is still the reining champion of the belching contest with an impressive 7.5 second effort that registered at a remarkable 94db. Next week is the demolition derby, walking on hot coals, machine gun shoot and combat scrapbook techniques using unexploded ordinance. It ought to be a blast (har dee har har har). After the first snow the feller are throwing a few contests for "snow coloration" . Catagories will be distance, accuracy and penmanship. After that, Dan has promised to demonstrate his prowess at fire eating, sword swollowing and marksmanship with a crossbow. Sort of a neuvo-William Tell meets Rambo thing. Following that demonstration will most likely be a visit from the fire department, the police, and the Air National Guard. Punch and cookies will be served. Adam BTW, the big door behind the change rooms for the pool is off limits. Trust me, you don't want to know why. I didn't want to know but they told me anyway; and you don't want to know why. |
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Hi Patty, I can relate with everything that you are going through, and I'm sorry that you have to suffer with pain and agonize over what the doctors keep putting you through. I was dx's with lupus over 10 years ago and was put on prednisone. I tried alot of other meds. but they didn't help or made me sick to my stomach. Then I went to several other doctors and always got different dx's. Mixed conn. tiss. disease, fibro. from the doc. in Boston, then rhum. arthritis, hashimoto from endo. doc., and of course everytime one of the meds. they try doesn't help, it is all from anxiety and depression. I am depressed because like you I just want my life back, and I'm tired of feeling like I have the flu every month and the chronic fatigue is horrible pretty much all of the time. My PCP is the only one that has understood the pain and has given me pain meds. I didn't want to take them either but they have given me back a somewhat normal life. I take care of my grandchildren because I lost my job after 27 years, and if it wasn't for the pain meds. I would be in bed alot too. I found a new rhum. about 7 months ago and I love him, he didn't say lets just leave things the same and stay on the pred. He said the lupus is under control but it is rhum. arthritis that is causing the pain. I started Orencia, which is a biologic med. and I would go in once a month for an hour and get it through an I.V. I had such high hopes that this was really going to be the one to work, in the begining it really did help with the fatigue but after the 6 month testing period it wasn't helping so when I went last week he said he wasn't going to add anything with it like he said, he now believes that the pain is from fibro. too and anxiety!!!!!! I couldn't believe it!! Not again. So I held in my tears which is almost impossable for me and he changed my anti-depressant from prozac to cymbalta because it is suppose to help with pain and he is going to do the whole run of blood tests and we will try rituxan or something else but he wants to get my anxiety under control. Good Luck! We are on the verge of loosing our house etc. etc. just like alot of people. Patti I'm sorry that I am carrying on about myself. I am also married to a saint. He works 24/7 to try to keep our heads above water. We have 3 grown kids, 2 still live at home and my grandaughter lives here with my daughter. I know how guilty you feel about your husband having to do so much. What is Ebpstein Barr? I can relate with you about how your DIL is made because you can't do everything you use to. My family tries to understand but I can tell when I don't go to something that they don't understand and are mad. You know they think I need to push myself and just get out more. UGH!!!! I was sick with the real flu, I think, last week and it was my grandsons 1st birthday and I made myself take a shower and go for a half hour feeling like crap just because I know my DIL and I would have got the cold shoulder again. I'm sorry that you can't seem to get a good answer or any good help to feel better. I know how you feel, I have a yard full of beautiful gardens that are just getting more run down each year and I say this year I am going to get out and do more and then the heat hits. Does the heat bother you? My face and head sweats so bad when I barely move. It's so embarassing when I do go out, especially in an air- cond. store dripping down my face. So I guess you can see we can all relate to what you are going through and understand how you feel. I'm glad you joined and I am looking forward to talking to you again soon. Take Care and like everyone said just don't give up you have to keep going to new doctors until you find one that will help you. Love, Jeannie |
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Patti....please consider taking the pain meds....I swear to you I could not walk down the street because the pain stopped me evrytime I moved the more intense the pain....what would take a normal person 5 minutes....me to get there walking......45minuts to an hour I kid you not....after going on a long acting opiate morphine sulfate I got my walk back....I walk now and I look pretty normal walking slow cause I just can't walk the pace I use to before chronic pain came into my life like a hammer.....I so understand when you say your whole world changed....I finally excepted the fact that I will be taking my pain meds for the rest of my life I'm 52 next month 53 I have been a chronic painer for 7 years .....I wanted some quality of life back I couldn't stay the quivering mass of flesh laying there I couldn't function....I was ready to kill myself thats when I found this group saved my life they did.....it's not good either for the nervous system to feel all that pain puts our whole nervous system in dis array.....And being affraid of the dependent on a drug is not the same as an addict...we depend on it to help controll the pain so that it's brought down to 3 2 or even 1 pain levels....we can never be pain free....I just went up in dosage only because of the pain getting worse not cause I was use to it.....unfortunatly I too have fibromyalgia degenerative disk disease of the spine peripheral neruopathy and just recently learned heridatary corproporphyria......it's a rare blood disorder that causes all kinds of complications and harm to the body when a person goes into attacks and has all their life it is heriditary my daughters both have it and the grandkids.....now that we know we can try and keep the kids from suffering and have the complications that I and my daughters have.......there is a ton of triggers.....anyway I wish you would consider the meds it's not good to suffer so much it really isn't and I am just concerned for you I care..................................................................Dale |
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The biggest problem I have in walking is the extreme fatigue. I was at the hospital about 2 weeks ago. I ended up falling which really scares me. A broken bone is All I need! After that they used a wheelchair for me. LOL I told them I couldn't walk that far, next time they'll listen.  |
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