Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Kath, don't be frightened. Do call the physician who prescribed the prednisone to you. You shouldn't try to taper without his or her advice. It's not recommended to make big jumps in the dosage. Describe your concerns and see what he or she recommends. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] scared > Hi, > > I've been scanning the notes on prednisone and I'm scared. I can't get into a rheumatologist until August - I've had RA symptoms since May (early). I am taking 20 mg of prednisone a day just so I can sleep and function - my hands are the worst. They get very very swollen, red, and painful without the prednisone. I cut back to 10 mg. once and my hands started hurting too much to keep that up so I went back to the 20 mg. I read that you can have bone loss very quickly from this drug. Now I'm terrified. But, I don't want to hurt in my hands all day, all night, every day. Any thoughts? I could use some encouragement and advice. > > Thanks > > Kath - who is not liking this whole thing very much Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Kath, You should never try to taper down or off of Prednisone on your own. It can be extremely dangerous. It should be done under the direction of your physician. Please call him/her, express your concerns, and follow his/her directions precisely. Also, keep in mind that not everyone experiences the terrible side affects of prednisone that are dangerous to one's health. I have been on prednisone for 6-7 years and can't go off completely as I must take it for my lungs. I've been on 10 mg. for at least a few years. Over the time I've taken prednisone I've frequently had to take very large doses, often 250, 300 and 400 mg. After about a two year bout of needing almost continual large doses my doctor ordered a bone density scan, expecting to find significant osteoporosis. I'd had a baseline done before starting to take prednisone and then the one after extended, long term, huge amounts of prednisone. The follow-up bone density scan showed no change in bone density what-so-ever. I continue to have no bone loss and actually have the bone density expected to be found in someone 20-30 years younger than me. I may not be typical but I am proof that not everyone who takes prednisone will have bone density loss. I've experienced weight gain although now am on a weight loss trend. I have some " buffalo hump " , which I consider more cosmetic than a threat to my health. The benefits I've received from the prednisone far outweigh any side effects. I share this not to try to convince anyone that prednisone is a good drug for everyone, but rather to encourage any of you whose physicians have prescribed it to keep an open mind. Yes, normally it is a drug we find great relief from but hate to take it because of the side affects. However, please don't let yourself get caught in a swift current of panic and fear it is going to bring great harm to everyone that takes it. If it caused great and horrendous harm to everyone that takes it, it would have been pulled from the market long ago. Prednisone, taken under the close supervision of the prescribing physician along with excellent communication between patient and physician, with the patient being fully compliant, can be a very good drug with great benefits and does not have to have significant or devestating side affects on the patient. MANY RA meds have the potential for serious side affects. But that doesn't mean everyone who takes those drugs will suffer those ill effects. Educate yourself and keep an honest and open dialogue with your physician and you will stand the best chance of finding the best combination of drugs for you. Always keep in mind that every person is an individual and will react in a different manner than others. I'm living proof that a drug that causes great harm to some is a miracle drug for me. Prednisone keeps me alive and for that I'm very grateful ----- and I'm very thankful that a couple of ladies on this list opened my eyes and my mind, encouraging me to not live in fear of every drug that has potential adverse affects. They helped me long before this group was formed and for that I can't thank them enough. In return, I truly hope each of you facing choices and recommendations to take drugs which may have potential serious ill effects will keep your minds open and not let yourselves be prejudiced unfairly. Fear is crippling. It is very easy to get caught in that swift current of panic and peer pressure. That too can be more devestating than whatever caused that panic and pressure. a, and the members of this group have a wealth of information to share. Use it wisely. Educate yourself and you will be able to hold intelligent, informed discussions with your physician and will be more likely to find an effective plan of action to treat your disease. Answers/solutions seldom happen overnight. Sorry to have been so long and to have rambled on and on. I'll get off my soapbox and put my runny fingers to sleep. I just had to share because you hit a nerve close to my heart. Elaine in Vegas --- In , " Kathy A " <joyfulkate60@m...> wrote: > Hi, > > I've been scanning the notes on prednisone and I'm scared. I can't get into a rheumatologist until August - I've had RA symptoms since May (early). I am taking 20 mg of prednisone a day just so I can sleep and function - my hands are the worst. They get very very swollen, red, and painful without the prednisone. I cut back to 10 mg. once and my hands started hurting too much to keep that up so I went back to the 20 mg. I read that you can have bone loss very quickly from this drug. Now I'm terrified. But, I don't want to hurt in my hands all day, all night, every day. Any thoughts? I could use some encouragement and advice. > > Thanks > > Kath - who is not liking this whole thing very much > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 HI Kath, I'm new to RA too. [ Probably started at about the same time as yours ] I feel your concern, and please know we're in this together. Our difficulties kind of makes everyone here " related " like " family " , I feel. Kath, I don't know if this will be of help, [ I sure hope it will ] but I've started using " Icy Hot " 3 to 4 times a day. I haven't been RA assessed yet, so not on prescriptions at the moment. The " Icy Hot " seems to help my joints feel a little better, so that they aren't quite as stuff for a while. I have trouble sleeping too, but when I rub on the " Icy Hot', it seems to ease enough for me to fall asleep. Also, I try to use a very soft rubber type ball that I can gently squeeze. But don't do it if this causes you pain. Perhaps it would be easier to just gently roll the ball with your opened hand. This seems to relax my hand somewhat. I also try to avoid writing with regular barrel sized pens, [ I use the largest barrel I can find, and with smooth flowing ink such as " roller writers " ], and when possible, avoid holding things in a tight fist manner. I also try to purchase household / medical equipment and tools that are made for folks like us. Website www.mayoclinic.com has some helpful info on RA. Also, for your sake, if there are household things that can wait, let them wait. Your body needs to rest as well as your mind and spirit. If there is someone who can help you with things, let them. I realize you may already know and perhaps do these things, but if any of it helps you, then I'm glad. This is kind of like learning to " walk " , but in another way. Kath, I wish you the best and my prayers are with you and keep your chin up. : - ) Jefersea [ ] scared Hi, I've been scanning the notes on prednisone and I'm scared. I can't get into a rheumatologist until August - I've had RA symptoms since May (early). I am taking 20 mg of prednisone a day just so I can sleep and function - my hands are the worst. They get very very swollen, red, and painful without the prednisone. I cut back to 10 mg. once and my hands started hurting too much to keep that up so I went back to the 20 mg. I read that you can have bone loss very quickly from this drug. Now I'm terrified. But, I don't want to hurt in my hands all day, all night, every day. Any thoughts? I could use some encouragement and advice. Thanks Kath - who is not liking this whole thing very much Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Kath, I don't think it's realistic or safe (not a doctor here) to cut from 20mgs to 10mgs. If you want to try to reduce it, talk to the doctor who prescribed it and consider cutting out 1mg a week or something like that. My rheumy said it is common to have some additional pain after cutting the dose, but it's often temporary (we were discussing a very small decrease such as 1mg-2.5mgs at a time). I have had bone loss from the prednisone. You can have your primary doctor refer you for a dexa scan to at least see where your bones stand today. Then you can get another one in 6 months or so and see if anything is changing. Also, you should be taking 1500mgs of calcuim with vitamin D each day. You can only absorb 500mgs at a time so I take three 500mg tablets each day. There are many other things you can/should do to prevent bone loss. Weight bearing exercises are the best. Walking while carrying 1 or 2 lb weights I read as recommended I think in an arthritis magazine, but I can't walk very long - it kills my feet. I can lift weights at the gym. The machines require, slow, limited range of motion with weight resistance. A trainer can show you how to do it safely, and my rule is don't do it if it hurts. I can do most things people without RA do, but there are a few things I couldn't. Tell the trainer about your RA and that you have an increased risk for osteoporosis, and they can develop an appropriate regimine. Also, discuss it with your doctor. I also don't work out (or don't work out really hard) if I am having a lot of swelling or too much fatigue. I do try to go one - three times per week. Trust me, it helps and you can do it. I imagine waiting to see a rheumy is hard. I wish you the best. Jennie --- In , " Kathy A " <joyfulkate60@m...> wrote: > Hi, > > I've been scanning the notes on prednisone and I'm scared. I can't get into a rheumatologist until August - I've had RA symptoms since May (early). I am taking 20 mg of prednisone a day just so I can sleep and function - my hands are the worst. They get very very swollen, red, and painful without the prednisone. I cut back to 10 mg. once and my hands started hurting too much to keep that up so I went back to the 20 mg. I read that you can have bone loss very quickly from this drug. Now I'm terrified. But, I don't want to hurt in my hands all day, all night, every day. Any thoughts? I could use some encouragement and advice. > > Thanks > > Kath - who is not liking this whole thing very much > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Before I was diagnosed with RA, I got an appointment to see a rheumatologist in August, too, three months away. I was having unbearable pain and was taking only Aleve. I looked the rheumy up on the Internet and found out that he had an email address. I emailed him; he felt sorry for me and called me to say that he was going to get me in sooner than August. So you might try looking up your rheumy on the Internet and see if he has an email address. Then explain your problem to him and see what happens. Sue On Thursday, June 17, 2004, at 10:37 PM, Kathy A wrote: > > I've been scanning the notes on prednisone and I'm scared. I can't > get into a rheumatologist until August - I've had RA symptoms since > May (early). I am taking 20 mg of prednisone a day just so I can > sleep and function - my hands are the worst. They get very very > swollen, red, and painful without the prednisone. I cut back to 10 > mg. once and my hands started hurting too much to keep that up so I > went back to the 20 mg. I read that you can have bone loss very > quickly from this drug. Now I'm terrified. But, I don't want to hurt > in my hands all day, all night, every day. Any thoughts? I could use > some encouragement and advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Kath, Meds are scary, just don't stop taking them that's very dangerous. I wish that you could get in earlier to see your rheumy. I would contact the office, speak to a nurse and explain your fears of Prednisone. You take care, Tawny --- In , " Kathy A " <joyfulkate60@m...> wrote: > Hi, > > I've been scanning the notes on prednisone and I'm scared. I can't get into a rheumatologist until August - I've had RA symptoms since May (early). I am taking 20 mg of prednisone a day just so I can sleep and function - my hands are the worst. They get very very swollen, red, and painful without the prednisone. I cut back to 10 mg. once and my hands started hurting too much to keep that up so I went back to the 20 mg. I read that you can have bone loss very quickly from this drug. Now I'm terrified. But, I don't want to hurt in my hands all day, all night, every day. Any thoughts? I could use some encouragement and advice. > > Thanks > > Kath - who is not liking this whole thing very much > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 In a message dated 12/30/2005 8:22:02 PM Central Standard Time, pmreid@... writes: Well, still no diagnosis yet, but symptoms are persistent. It has lasted 3 weeks now. push for a diagnosis. get help and meds if needed. you can still live a somewhat normal life if youc atch whatever it is early enough. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 first find out if there is a clinic in your area where you will be seeking treatment. Always ask for cash pay discount. Teaching hospitals sometimes have clinics which are sliding scale fees. As far as meds are concerned there are programs for the uninsured...they do work by income..so I am not sure if you will qualify but apply for everything that you can. Can you possibly get a job since you are a nurse in a clinic or place that provides benefits? You should also be able to get short and long term disability too. Usually this means you have to work a year before you can use the benefits...but this might give you enough time. Now is a good time before you have a Dx to change jobs. I would also find out about buying disability insurance and medical insurance if you have to go the self insured route. Also see if you can get insurance that pays if you loose or have a drastic change of income on your credit cards, car loans and morgage. This is not to say that you will not be able to work...but if you have to deal with this you will be prepared. Another suggestion would be working for a private doc...the income would be low...but most employees get there healthcare for free and med samples when they need them. When you see the doc ask for samples!!! Let them know you have NO health insurance and pay 100% out of your pocket for care. That might help. Toni > > Well, still no diagnosis yet, but symptoms are persistent. It has > lasted 3 weeks now. The pain in my hands, feet, ankles, and wrists is > beginning to keep me from sleeping now. Which is difficult, since I > work 12 hr shifts...So tired, with no sleep. Someone at work gave me an > idea, that I could buy a device that helps to get lids off containers. > I bought a 'bag lady' cart, to get things back and forth from the > store. Thanks be that I can fairly well tolerate walking, so I can get > around to do those things. Unless someone comes up with something > better for treatment, I just will not be working very much longer, just > can't use my hands well enough, and being a nurse that is VERY > important. You all talk about so many things, and I am wondering, with > a better income, and no insurance, how I am going to be able to afford > all the doctor visits, lab tests, etc, since I don't qualify for any > assistance. Does anyone have any ideas, anything I can do to help > defray costs, since I think I am headed for a very costly thing. The ES > Tylenol helps some, allows a couple hours sleep at a time, so better > than nothing. Feeling very scared about all this. The worst part is the > pain and severe swelling in my hands. They are becoming weak enough I > have trouble holding onto things at all. Went to put a shower curtain > down by the cashier at Walmart the other day, and it came out of my > grip aand ended up almost thrown at her by mistake. So embarrassing. > Any ideas would be much appreciated. > Pam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 In a message dated 12/31/2005 4:12:33 AM Central Standard Time, aclavern33@... writes: As far as meds are concerned there are programs for the uninsured...they do work by income..so I am not sure if you will qualify but apply for everything that you can. yes there are programs out there. I thnak the makers of Humira for being so generous. A website that may help is pparx.org. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 , The heart issue is something I have had plenty of experience of, missed beats, thumping chest, beating in my throat, very quick heart rate you name it I had it and its awful !!!! I have to agree with Lea and get an ECG done, I did and saw a specialist but although they picked them up on the monitor it was nothing to worry about so get the tests done and it should put your mind at rest. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi all, As you all know, I am scheduled for explant on Feb. 3. I am afraid that it will not be soon enough. I have had a rough few days. My neck and spine has hurt so bad. I have no strength and have been extremely fatigued. The part that is scaring me is my heart. I have had extreme pain and burning in my chest. I can feel my heart jump around, like it is an engine struggling to fire up. My heart rate changes from very low to high without any physical exertion. I get winded when I talk, and my right kidney has been hurting. I almost passed out at church, and couldnt participate in worship. Last night I was lying in my bed and my heart started to pump very hard and I couldn't sleep. I prayed and it calmed down so I could sleep. I was afraid I wasn't going to wake up again if I fell asleep. My husband lost his first wife and found her dead, I was afraid he was going to have to go through that again. Have any of you ever felt this way? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi , I had that same heart jumping experience when sleeping at night, I had it before surgery and I had it for about a week after surgery. Haven't had it since then. It is terrifying, that's for sure. Actually a few weeks before my surgery I wasn't sure I was going to make it to my surgery either, but luckily I am here to talk about it. Sis > > > Hi all, > > As you all know, I am scheduled for explant on Feb. 3. I am afraid that it will not be soon enough. I have had a rough few days. My neck and spine has hurt so bad. I have no strength and have been extremely fatigued. The part that is scaring me is my heart. I have had extreme pain and burning in my chest. I can feel my heart jump around, like it is an engine struggling to fire up. My heart rate changes from very low to high without any physical exertion. I get winded when I talk, and my right kidney has been hurting. I almost passed out at church, and couldnt participate in worship. Last night I was lying in my bed and my heart started to pump very hard and I couldn't sleep. I prayed and it calmed down so I could sleep. I was afraid I wasn't going to wake up again if I fell asleep. My husband lost his first wife and found her dead, I was afraid he was going to have to go through that again. Have any of you ever felt this way? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 I really feel for you and can sympathize. Once I realized it was the implants making me sick, I got pretty anxious to get them out. Just knowing they were harming me and there was nothing I could do about it was nervewracking. I have experienced the crazy heartbeat also - never sure if it was from medicines, anxiety, or the implants. Feb 3rd seems so far away, doesn't it? It will get here. Hang in there. I'm praying for you. Cherie > > > Hi all, > > As you all know, I am scheduled for explant on Feb. 3. I am afraid that it will not be soon enough. I have had a rough few days. My neck and spine has hurt so bad. I have no strength and have been extremely fatigued. The part that is scaring me is my heart. I have had extreme pain and burning in my chest. I can feel my heart jump around, like it is an engine struggling to fire up. My heart rate changes from very low to high without any physical exertion. I get winded when I talk, and my right kidney has been hurting. I almost passed out at church, and couldnt participate in worship. Last night I was lying in my bed and my heart started to pump very hard and I couldn't sleep. I prayed and it calmed down so I could sleep. I was afraid I wasn't going to wake up again if I fell asleep. My husband lost his first wife and found her dead, I was afraid he was going to have to go through that again. Have any of you ever felt this way? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Lea, I think that's great advice for - check on the heart and if possible, move up the surgery. I have MVP (Mitral Valve Prolapse) as well, have had it for many years, and when something is wrong with me healthwise, it really acts up. Also, even though I don't like taking medications, I did take Xanax for a little while after the surgery and it really helped the palpitations. Sis --- In , " Lea " <devans@c...> wrote: > > Dearest : > > I'm so sorry that you have to go through all this pain and suffering. I wish > that you could have an ECG to see what is going on with your heart. Please > see your family doctor and ask for help. I too had some severe problems with > my heart before I had these devices removed. The good news is that my heart > is fine except for the MVP, and even this condition has improved...if that > is possible. > > Honey, is there any way that you could be explanted sooner? I think that if > you see your doctor he/she will help to put your mind at ease. > > Sending love always........Lea > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`` > scared > > > > > > Hi all, > > > > As you all know, I am scheduled for explant on Feb. 3. I am afraid that > > it will not be soon enough. I have had a rough few days. My neck and > > spine has hurt so bad. I have no strength and have been extremely > > fatigued. The part that is scaring me is my heart. I have had extreme > > pain and burning in my chest. I can feel my heart jump around, like it is > > an engine struggling to fire up. My heart rate changes from very low to > > high without any physical exertion. I get winded when I talk, and my > > right kidney has been hurting. I almost passed out at church, and couldnt > > participate in worship. Last night I was lying in my bed and my heart > > started to pump very hard and I couldn't sleep. I prayed and it calmed > > down so I could sleep. I was afraid I wasn't going to wake up again if I > > fell asleep. My husband lost his first wife and found her dead, I was > > afraid he was going to have to go through that again. Have any of you > > ever felt this way? > > > > > > > > > > > > > > > > > > Opinions expressed are NOT meant to take the place of advice given by > > licensed health care professionals. Consult your physician or licensed > > health care professional before commencing any medical treatment. > > > > " Do not let either the medical authorities or the politicians mislead you. > > Find out what the facts are, and make your own decisions about how to live > > a happy life and how to work for a better world. " - Linus ing, > > two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) > > > > See our photos website! Enter " implants " for access at this link: > > http://.shutterfly.com/action/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 , It sounds like an anxiety problem . . . It might help if you found a way to spend the day relaxing, concentrating on pleasant things . . . Whenever a depressing thought comes in, shoo it out, and think happy thoughts. It's not at all unusual for a woman to have her worst times just before surgery. Do drink plenty of non-chlorinated water. Find a funny movie, inspirational book, meditate, do something you love doing, think of all those who love you and all the wonderful times you've had with them. Look at old picture albums and remember the good times. Controlling the thoughts you dwell on can go a long way toward feeling better. Hugs and prayers, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 - I experienced irregular heartbeat during my illness, especially at rest. I attributed that to the strain my body was under because of being ill, when my body is fighting something like this, my heartbeat gets really crazy and I notice it the most when I'm resting. Could be stress on the body itself, or related to stress that you feel emotionally. Sis > , > > It sounds like an anxiety problem . . . It might help > if you found a way to spend the day relaxing, > concentrating on pleasant things . . . Whenever a > depressing thought comes in, shoo it out, and think > happy thoughts. > > It's not at all unusual for a woman to have her worst > times just before surgery. > > Do drink plenty of non-chlorinated water. > > Find a funny movie, inspirational book, meditate, do > something you love doing, think of all those who love > you and all the wonderful times you've had with them. > Look at old picture albums and remember the good > times. Controlling the thoughts you dwell on can go a > long way toward feeling better. > > Hugs and prayers, > > Rogene > > > > Opinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. > > " Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world. " - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) > > See our photos website! Enter " implants " for access at this link: > http://.shutterfly.com/action/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 , Honey I know exactly what your going through. What you explained is what I've been experiencing for the last 6 yrs. I have had ER visits numerous times through out the 6 yrs with the symptoms like a heart attack. EMC even gives me Nitro-glycerin, thats how bad it is. I have also in 6 yrs had two series a few yrs apart of the treadmill/stress test and Muga heart scans and both times was normal. And at I literally feel my heart pounding so bad I feel in the veins pumping up and down my arms and legs (which just developed about a yr ago). Even though the reports says I'm okay, my body and mind re-acts and panic/smothery feeling, its so scary. I explant Jan 31-Dr. Kolb and like you I wish it was yesterday. Hang in there, Honey we will Survive this. My anxiety and fear of what may happen during my surgery is about to get to me. But, I feel I'm in good hands. The Lord and Dr. Kolb. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hello, I also had that same feeling.I would be sleeping and all of a sudden my heart was racing and I wanted to tell my husband to call 911. But would sit on the floor and try to relaxes and take deep breaths.Sometimes I would be sitting or taking a shower. I'm going to have this implants taken out this week on thrusday January 19. I hope eveything goes well. I'm very nervous. I gone though this 4 times because my implants ruptured. I will keep you in my prayers. I always say some prayer for women who have them and women who dont have them no more. Jackieauntsisnj <auntsisnj@...> wrote: Hi , I had that same heart jumping experience when sleeping at night, I had it before surgery and I had it for about a week after surgery. Haven't had it since then. It is terrifying, that's for sure. Actually a few weeks before my surgery I wasn't sure I was going to make it to my surgery either, but luckily I am here to talk about it.Sis>> > Hi all,> > As you all know, I am scheduled for explant on Feb. 3. I am afraid that it will not be soon enough. I have had a rough few days. My neck and spine has hurt so bad. I have no strength and have been extremely fatigued. The part that is scaring me is my heart. I have had extreme pain and burning in my chest. I can feel my heart jump around, like it is an engine struggling to fire up. My heart rate changes from very low to high without any physical exertion. I get winded when I talk, and my right kidney has been hurting. I almost passed out at church, and couldnt participate in worship. Last night I was lying in my bed and my heart started to pump very hard and I couldn't sleep. I prayed and it calmed down so I could sleep. I was afraid I wasn't going to wake up again if I fell asleep. My husband lost his first wife and found her dead, I was afraid he was going to have to go through that again. Have any of you ever felt this way? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi , I feel for you and can completely relate to your story and anxieties! I also suffer from severe neck and spine paines, heart palpitations, pain in heart area, kidneys, etc. My left side has given me more troubles from the beginning, it almost seems as if my implant has made connections through parts of my lungs...Some days when I breathe in deeple it hurts so bad I get really scared! It's as if the implant is eating its way through my lung and part of my heart tissue to the back of my back! And the beating of the heart feels really weird too. I always had a very low (almost extremely low) blood pressure and pulse. Now sometimes it feels like my heart tries to beat it's way out of my body (I start sweating like crazy too). As you, I am extremely tired all the time. I have been so tired for such a long time that I had to quit my school, job, even gave up housekeeping and cooking etc. It's unfair and very sad that you have to go through all this. I certainly think that you are not going to die from you implants and the beginning of February will be here before you know it when you try to focus on all the good things in your life/your surroundings. I know it's not easy - I get anxious now that I know it must be the implants, when thinking about the fact that I have to wait probably about half a year before my husband can make time to join me for my explant - but you are so much more than your implants!!! You are a strong woman, you'll make it for sure. Since a year I am keeping a grateful journal. It's hard to focus on good things or the wonders of nature or the happiness your family and friends bring you when you are in constant pain and fatigue. So I promised myself I'd write down 5 things each nite before turning in that I am grateful for. I have managed to write almost every day. Helps me focus on happiness i still have, eventough I am in a lot of pain and extremely tired too. Go for a nice walk outside, take a deep breath without thinking about the implants and smell the grass/feel the cold wind. It'll make you have more positive thoughts! Cheers, Audrey (I had/ sort of still have a bit left of, the flu). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hey , Audrey here again: You describe exactly how I feel too when you say " I just feel like this illness has invaded every part of me " . I suppose many women on this support group feel the same way, and I am very grateful to have found you. Thanks for sharing all your experiences, feelings, and knowledge. Hang in there, Audrey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Audrey, A Grateful Journey sounds neat. My husband(Bless his patient heart) is trying to help me stop thinking/expressing neg. thoughts and sad emotions as they arise. Since my condition has become a daily trauma, finding positive is an effort. I'm an open book. I am what you see. Which for the most part is good until a crisis comes up. And I wear my self/husband out emotionally. I've got to share this was so cute... My husbands just came and kissed me saying, " Your little fingers are going so fast-how cute " . I told him, " yeah, when you hear me typing its giving your ears a rest honey " . He has been such a God sent Blessing. I so Thankful for his support and caregiving. Anyway Audrey, I " m starting My Grateful Journal tonight. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi a, WOnderful! I am very happy to read that you are both typing and starting a grateful journey tonight. You posted the message while I was searching for your post-Kolb visit update. My heart goes out to you - and in my opinoin you are a 'Shero' for immediately trying to find and write down the good/happy moments in your painful/fatigued daily life. Also a big HBM (Hug By Mail - made it up week and a half ago in a reply message) for your husband. I am glad he's so supportive, helpful, and patient. My husband feels helpless a lot I suppose (I can tell by the way he looks at me, you know?). Isn't it ironic that these implants are giving not only us but also our husbands/significant others such a hard time instead of pleasure?! All we wanted was feeling better about ourselves! (Girls just want to have fun, Ms. Lauper was right (of course we want more than that, but still, a little fun now and then is a nice to have in your life). Take care, Audrey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Audry, I know our husbands are so helpless feeling. My husband and I are brutally honest with each other (it works for us) We have only been married for 4 yrs. 8 months after we married was when my condition started everyday and has progressively gotten worse since. At first he thought I was giving in to depression because my dad passed away 2 months before we married(on my Birthday) and my dad was like a best friend as well as my mentor. I was in grief also, but I knew it wasn't depression. 2003 I woke up and could not raise/lift myself up and then I could not walk without his help. He knew then something bad was taking over my functions. He talked me into Chiropractic which is in Holistic Med as well.. He went with me to 4 Drs. and to them I had no real reason I should be sick. When he took me to my Chiro. and seen the inflammation scan results he almost cried. And apologized for not understanding. A year and half twice week Chiro. helped me gain enough strentgh to make Atlanta trip. After 3 hrs. of her consult and a few lab results from there, he got those tears again, and he said, " I can't believe I had been thinking the past year you was maybe giving in to some of your pain, " he apologized again. if I had actually been giving in to the pain- he would still have taken care of me. Audry, I've learned its so hard for men to express their fear and sadness, due to wanting to be the strong one. In the mist of my condition, I've noticed at times he has his aches and pains but would never express it so I wouldn't worry. I'll be so glad when I can go a day without being so disabled and our marriage is not based on my good/bad days. For many yrs there was no light at the end of that tunnel.. I see light now. Our husbands, children and family and friends need prayer also. They Love us and feel so helpless seeing our pain. Educate and allow your husband/family to be a part of your every step. Although some men may seem not interested. They are, but, its really overwhelming for them too. It takes time to soak in for them, because they wished we didn't have to go through it. Take Care, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 My husband told me he thought I was just being neurotic, it took him a long time to realize my symptoms were real. After three weeks of having implants, one of my joints swelled up and turned red, and the vein inside that finger must have bled under the skin because my finger turned black and blue. I knew I was in trouble then, and every time I tried to talk to my husband about it, he shut down. Eventually he opened his eyes, but he pretty much abandoned me for a couple of months. Now he's just the opposite, always saying nice things to me, but I was ready to go stay somewhere else so I could heal in peace. Sis > > Audry, I know our husbands are so helpless feeling. My husband and > I are brutally honest with each other (it works for us) We have > only been married for 4 yrs. 8 months after we married was when my > condition started everyday and has progressively gotten worse > since. At first he thought I was giving in to depression because my > dad passed away 2 months before we married(on my Birthday) and my > dad was like a best friend as well as my mentor. I was in grief > also, but I knew it wasn't depression. 2003 I woke up and could not > raise/lift myself up and then I could not walk without his help. He > knew then something bad was taking over my functions. He talked me > into Chiropractic which is in Holistic Med as well.. He went with > me to 4 Drs. and to them I had no real reason I should be sick. > When he took me to my Chiro. and seen the inflammation scan results > he almost cried. And apologized for not understanding. A year and > half twice week Chiro. helped me gain enough strentgh to make > Atlanta trip. After 3 hrs. of her consult and a few lab results > from there, he got those tears again, and he said, " I can't believe > I had been thinking the past year you was maybe giving in to some of > your pain, " he apologized again. if I had actually been giving in > to the pain- he would still have taken care of me. Audry, I've > learned its so hard for men to express their fear and sadness, due > to wanting to be the strong one. In the mist of my condition, I've > noticed at times he has his aches and pains but would never express > it so I wouldn't worry. I'll be so glad when I can go a day without > being so disabled and our marriage is not based on my good/bad > days. For many yrs there was no light at the end of that tunnel.. > I see light now. > Our husbands, children and family and friends need prayer also. > They Love us and feel so helpless seeing our pain. Educate and allow > your husband/family to be a part of your every step. Although some > men may seem not interested. They are, but, its really overwhelming > for them too. It takes time to soak in for them, because they wished > we didn't have to go through it. Take Care, a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Audrey, Your message to really struck my heart! . . . You've been through so much! . . . However, I can see that you're mentally packing your bags for the long haul! You're going to do fine! One step at a time! Hugs and prayers, Rogene Quote Link to comment Share on other sites More sharing options...
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