I wasn't planning to come back on a forum and complain about my health problems anymore, but I don't know what to do with all these feelings. My diagnosis of fibromyalgia was 11 years ago, proceding the diagnosis of a connective tissue disorder, that was taken away on the assumption by my GP that I didn't have it, and I was continued to be told I had fibromyalgia, though I do not have any tenderpoints, just widepread aches. It's not that I don't believe in this, but getting diagnosed with that and being told he just didn't know what else it could be, what are you to think? And a rheumatologist not long ago telling me most people have it because they are depressed. I have doctors that say I do have it, and the specialists that say I don't. I went for 14 years without one single doctor being able to make me better. All I could do most of my time is lay around in bed sick with pain and the nastiest fatigue imaginable to man kind. Now I'm facing 40 and haven't done anything with my life, other than managing to raise two gorgeous kids. Other than, it's been pretty meaningless and miserable. But I know now it takes an immunosuppressive medication for me to be able to live a decent life, and while I'm happy I have medication that is helping me, I'm also sad knowing that from day one, all this could have been prevented. How in the world can someone have such a disease and a doctor to be so blindsighted to seeing that? And not just one, but several. To this very day, and I am talking about today, I am still ridiculed over my health issues because the doctors could never figure it out beyond what they called it to be, FMS. All I've been able to do all day is just cry. I guess it's good to get it out, but I don't like feeling this way.
The following 2 users give hugs of support to: neveragain444 caribear (08-10-2011), kirstee (08-09-2011)
Your heartfelt post will trigger a nerve in many of the beloved who post here. This is not something you alone have experienced. To say this is frustrating experience is not even adequate. I have had the same experience as you, but I kept going until I found the right doctor - which took inordinate patience and dedication when I felt so rotten. It is such an awful, painfully excruciating experience that can leave you breathless. BUT, please keep going until you have the answer. The truth is out there somewhere and you keep searching until truth and mercy meet.
Have you read any books on Fibromyalgia so that you can keep ahead of the ignorance of the doctors you are currently under the care of?? If not, please take this advice and educate yourself. The books I recommend over and over are "What Your Doctor May Not Tell You About Fibromyalgia" by St. Amand, and "From Fatigued to Fantastic" by Teitlebaum.
My heart goes out to you, totally and completely.
The Following User Says Thank You to kirstee For This Useful Post: neveragain444 (08-09-2011)
I started studying medicine after my grandfather developed a brain tumor from falling in the road 11 years ago, that led to his death, I asked him to go to the hospital, and he didn't want to, and I let him by with that choice. I don't know why I blame myself, it took 3 CT's for the doctors to see a large tumor on his brain, it wasn't even the surgery that was the actual cause, it was where he had black lung and it was hurting him for them to suction it out, and so my mom made them stop. The more I taught myself medicine, the more I wanted to learn, I did a home study program, didn't get certified, so I went to a nursing school while I was sick, but I didn't last long enough to finish. I'll always want to be a doctor, but it's such an unrealistic thought. So yes, you can guarantee I know more than I need to know. I have read From Fatigued to Fantastic, but not the other.
I already know the answer, I know my immune system is overactive whether it's MCTD or MS, that is my only confusion on the matter. Getting a diagnosis though, I don't know. Neither disorder can be 100% for sure in a determination. Everything just helps in aiding in a diagnosis. My doctor did say that it was very likely I had it because of how Imuran was working, but still, it's in question as to what is wrong. Well, can you see the humor in that one? Boy ole boy.. It's pretty much just a choice with them if they want to decide you have it or not. And that's all it is. Well, their choices with me have run out. When you have antibodies that prove how you feel, that itself should be 100% for sure in this diagnosis, but the bull with medicine, it is so flawed, and we pay that price.
I apprieciate being able to talk to someone about it. Mental abuse isn't something I handle well and I've had a wiff of it all day, and with what I was already feeling, I did not need that. I've felt alone all day. So thank you for posting back, and for understanding. It's really been helpful.
I can't focus today so didn't read the other reply's... I'm sure someone already told you that you should not be afraid to post on here, complaints and all. We all do it! Sometimes we just need to vent to other people that actually understand. We all have one thing in common here.... We all have this hideous Sickness that seems to consume our lives...
I have been able to accomplish things yet at the same time it feels like I haven't... It's easy to think about what may have happened if you weren't sick all these years... I know I pushed through it but I think I would have done sooo much more... But, these are the cards we were given & we just have to make the best of it. I believe everything that happens is meant to happen.
Being a parent is a huge accomplishment! I do my best to teach mine morals, manners, have self confidence & faith in themselves. I encourage them to go to college & make wonderful lives for themselves. I'm not sure what will happen when they grow up, but I will always know I have done my best. I know I would have been a better parent if I wasn't always sick but we are different people than we would have been.
Raising 2 Beautiful children is big deal! Now it's time to focus on yourself & what makes you happy. I've been making my mom jewelery for her Birthday, we are celebrating it tomorrow. I rarely ever get the chance & it's been sooo hard with the kids running around. But I'm doing it!
This is the place to vent, raising 2 children is a big deal especially when you dont' feel well and I understand why you are bitter in not finding this much sooner. That has happened to most of us. I suffered terrible fatigue with CFS, but no one checked my thyroid for 10 years. Once I was put on medication I felt somewhat better. It wasn't until all the fibro symptoms set in that they gave me a better look.
Hang in there, be proactive about your treatment and think about what you really need in your life now. 40 is still very young and you could have a career, hobbies, whatever you choose to do!
Well it just gives me more reason to focus on my problems, like I am not hypocondriac enough about it all as is, it's like there with me so constantly, that it's been hard to focus on anything but.
I don't know if anyone has the answer to this, but if you do, I would really love it if you could share it with me. How do get to the point that you want to live your life no matter how sick you are? I think I would like to figure this out while I am a little better, incase things get bad again, or incase that medication I am taking ever does anything serious to my health.
I'm scared of what is going to happen if it does.
The following 2 users give hugs of support to: neveragain444 caribear (08-11-2011), kirstee (08-12-2011)
neveragain, I've been asking myself this question lately and I'm glad you brought it up. I was away from this forum for a long time as well (although I read it occasionally with no participation) because I kind of got used to my situation (from 2004). Suddenly however I've been feeling much much worse (since about 3 months). It's been terrible, awful ride, and this is where I asked myself the same question: how do you go on under these circumstances, as if nothing is happening ? c'mon ! What I feel during the very bad flare ups for the past 3 months apart from incredible intensified pain and formidable exhaustion is : desperation, nervousness, alienation from other normal people, frustration, anger, impatience, insecurity, fear for the future. Now these thoughts leave no room to any positive approach whatsoever from my side. What I have done was to visit my rheumatologist to do all the tests all over again, make sure that nothing has changed (like that the illness has not evolved into something else). Then I found a psychologist who does Cognitive Behavoural Therapy (CBT) and I am hoping that she will be able to teach me and guide me through the process of living with a chronic illness without me thinking that this is it, if you know what I mean. I've only had one session and will continue towards the end of August for about 6 months, once per week. August here in Greece is a dead month, everybody is on vacation. This is a very difficult situation really. And people feel different levels of pain/exhaustion and from what I noticed in this forum and elsewhere is that the ones with a mild/moderate case are more positive/optimistic (like I was before) but the ones severely touched are much less of all that ! and unfortunately I realized that it could get worse with time. Some time ago I posted a query if fibromyalgia has gotten worse or better or remained the same to people here, but I got very litle input on it. In other sites regarding this illness I hear of people on canes/wheelchairs? waw ! Have you tried CBT ? I'm not betting on it, but well, who knows. Also, I don't take any anti-depressants or Lyrica or anything like that cause I'm totally unable to handle the side effects. I only take the regular anti-inflammatory, pain killers.
Last edited by tutti-fruti; 08-12-2011 at 12:15 AM.
Reason: addition of sentence
I was in therapy for a long time over having severe depression, from abuse where I went through a divorce, to being in love with a man I shouldn't have fallen for, which was leading me into self destruction, and for the anguish of my health issues. It took 6 years to get me in a better place. I am seriously considering therapy again, but I'm not sure if it can do any good. I know if I ever get in that place of being as sick as I was over the past 14 years again, I don't believe anything could make that okay. My doctor told me the Imuran can cause liver failure, bone marrow suppression, it can cause cancer. Well what if it does cause something bad to happen, then what?
Maybe I shouldn't look at it that way. I am very thankful that I have medication that is helping me feel better. I have not been treated properly in the past, and now that I am, things could get so much better, nothing may go wrong. I know it's hope that gets you through it all. Something I guess I need to work on.
The pain I endure doesn't scare me, even though I feel it every second of the day, I know I can take medication to calm it down some, or go through physical therapy. If I don't have something that helps, my doctor can always give me a shot of something stronger. It was the fatigue that really caused the problems I've had. I had to make myself do anything, everything took effort, and not once was I ever able to do it, it kept me from being able to function, all I could do most of the time was just lay around in bed in misery.
So tormenting to have no energy to do anything, it has left me with some severe emotional pain...
Plaquenil and Imuran was my very last hope. I knew if it didn't work, I would never overcome this disease, and I was going to give up my life if that didn't help. I am willing to fight past a bad day, willing to fight past a flare and keep hope it will get better, but I am not and will not deal with the past torment I have went through, I question how you can, but I guess I shouldn't be asking, because I know I can't do it.
these two drugs, Imuran and Plaquenil, are never really prescribed for Fibromyalgia are they? are you taking them for this condition or another condition that you have? It's strange that your Doctor is treating you with an immuno-suppressant drug that treats rheumatoid arthritis and an anti-malaria drug. But .... if it works for you, then I guess it's ok and I hope you will not suffer from any side effects at all. I have developed a drug phobia, a total fear of medication. I've tried Cymbalta for one day and when I woke up the next day I was out of it completly and stopped it and I bought the Lyrica box and it's still sitting in the cupboard. I read all the side effects and I said to myself just forget it. I had also tried another anti-depressant for 5 days (don't remember the name, Saroten? Saropram?) for 5 days and it really disoriented me giving me general feeling of unwelness, made me all panicky with dry mouth, dizziness etc. Besides, in all the forums and opinions that I've read, there is no guarantee that these medications will make you feel ok, actually some people say it does nothing to them, and they continue living in pain. So why should I take them, endure the side effects, and get hooked to them without any particular/guaranteed benefits and then have to bear all the withdrawal symptoms of getting off them. Today is an extremely painful day for me, I'm glad that you are a very strong person and that pain doesn't scare you. I can relay to the exhaustion big time. And as for the CBT, I hope it will help cause it's a short term therapy that's supposed to change the way you see things into a more positive approach.
Yes I am taking those two medications for a connective tissue disease. The only types of medication I was ever prescribed for fibromyalgia, were medications that aimed to ease the pain, muscle relaxants, narcotics, non-narcotic pain medications, & savella. It wasn't helpful. NSAID's are more effective with me than percocet. I will not take narcotics anymore. I get alot of muscle strains, alot of muscle knots to top that off, with muscle spasms, and neuropathy, which is in question as to why that is occuring, but neurontin, is not one I could have managed to get by without, I had severe back pain that I could not handle and it controls it. That and lyrica should not be addictive. Most of the medications I've used, I haven't had alot of trouble from, if there is an initial side effect, it can go away, the majority of medications are harmless, that would be something to discuss with your doctor prior to accepting a prescription. Maybe your talking about savella. That is the one that treats fibromyalgia. I had a horrible "happy druggy" side effect to that. It made me feel so high and I went weeks after with depression from just withdrawing and wanting that medication, but I flushed it down my toilet. I understand your point.. I live in pain every day but I don't have to be in so much pain, that I can't get up, or in so much pain that I would rather see my maker, than deal with it, so I am grateful to have medication to ease that. I think your choice in not taking medication is just fine, but if you ever need the extra help, you know it's an option.
The Following User Says Thank You to neveragain444 For This Useful Post: tutti-fruti (08-13-2011)