Bobbie...question
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Bobbie...question
Can you tell me some more about the spinal injection that you talked about in Tarable's thread. You said it helped with your fibro pain. Did it help a lot? Do you have to go to a specialist to recieve it? My fibro is flarred up and extremely painful. It seems to stay that way any more.I believe you said it was a steriod shot. What kind of steriod? I have taken cortisone. But I'm very scared of prednisone.
Hi Wanda, I know I'm not Bobbie, but I just wanted to say that I'm saying a prayer for you tonight. I hope you get better soon... 
Oh Heidi, thats so sweet I sure need all the prayers I can get. Since DH is having to work these long shifts, getting off many nights at 9pm,it's made it really hard for me.I can't stay up very late .He will get home around 9:45, and by the time we spend any time together, and he trys to unwind from the day, it's nearly midnight.Getting over tired like this, and never sleeping good to start with, makes the pain horrible. The other day it was so bad, I took 4 different kinds of pain meds,and it still didn't take all of it away.
I'm so sorry you are in so much pain, Wanda. I will pray for you, too. I hope Bobbie can give you some information that will help you.
((HUGS))
Wanda are you on any medications? I can tell you what I am currently doing but everyone's Fibro is different. This time of year for me has been a nightmare for many years but I seem to be getting some of my issues under control. Still going through flares and if I don't do what I am supposed to do I pay the next day. Yesterday was bad, I didn't take my medication, it was cold and rainy and I hurt from the top of my head to the pads of my feet. I ended up in my chair covered up in two blankets and slept until the medications kicked in. Some days, I just have to baby myself, medication or not. Fibro sucks so bad... I look normal but I am so not normal. Which makes things all the more hard on me.
At first they didn't know I had Fibro, they had diagnosed the Degenerative Disk Disease. They referred me to a Physical Therapist. Physical Therapy in my case caused more issues, it would ware me out for days after and then it would be time for another appointment. They used ultra sound therapy and heat packs and that was very cool but the rest just wasn't doing me any good.
They also sent me to a pain management specialist for the Degenerative Disk Disease, I have had both cortisone and prednisone injections. Facet Joint Injections gave me much improvement with the pain in my back but I was having to go back every 3 to 4 months for more injections, which are done in sets of three. One thing about the fibro, the injections don't seem to last as long as they do in a person without the fibro. So repeat injections became a part of the game. Intradiscal Electrothermal Therapy was done on the left side of my body (where most of my damage is present) and tail bone last winter. It was scary to go through but it has so improved my pain levels in my back to a manageable level and I haven't had any Facet Joint Injections in over a year. I will need to have the procedure done again because the nerve endings regenerate in time but it is suppose to be years down the line. However, I wasn't diagnosed with Fibro until last December. So they were just treating the effects from my Juvenile Rheumatoid Arthritis which had progressed to Degenerative Disk Disease.
Here is a web site about treatments. Stop-Pain.com
I went in last winter, In a full flare to my primary dr and told him that I was done being in pain and that I wanted everything ruled out. I feared I had Lupus. He ran every test under the sun and came back with nothing, except a slight elevation in my RA factor. So we narrowed it down to what we believed to be Fibro. Which was a relief to finally put all the pieces together, it explain so much and I wasn't going nuts. LOL I was then referred to a Rheumatologist that is one of the leading dr in Fibro in Ohio. I went in with out him knowing what we thought it was, I wanted him to tell me that it was Fibro with out me suggesting it in anyway. Which he did. 
I am currently taking... Relafen Tabs 500MG twice a day. Zanaflex Tab 4MG twice a day. Vicodin Tab 5-500 twice a day. I have a T.E.N.S unit I use whenever I am having a flare in my back or legs. These were perscibed by my the pain management dr. Then my primary care has me on Cymbalta (for sleep issues, I take it and an hour later I am ready for bed) and I actually sleep well (that I had never done in my whole life, even worn out from the Fibro I couldn't get a good sleep). Then my Rheumatologist has me on Neurontin Tab 600MG, 1 in the morning, 1 in the afternoon and 3 at bed time. He said that the medications my other two doctors have me on would be the cocktail he would be using too, so I am on a typical medication regiment for a advanced fibromyalgia sufferer. Taking all the pills stinks. I was a no medication person prior to the whole Fibro. I had actually resisted medication up until last winter, I took as little as I possibly could and even then I resented it. I was anti pain medication even then, I would suffer through, afraid of addiction. I just started on the Vicodin this past July. I went in to see the pain management doctor with a mild flare, I was crying and he said it was time. That I was why the medications were out there and that the pain wasn't worth the fight. I gave in and I took back another piece of my life. Which each step I have taken up until now has been an improvement to my life, I am lucky to be being treated by some of the best doctors in their fields in our area.
Don't get it wrong. I still have pain sometimes, but I can take another pill if need be and it isn't as intense as it once was. I still get stiff in my joints, weather changes or over doing things is the worst. I still am tired all the time but not as bad as I was before I started taking the Cymbalta. I have also gotten a wheel chair, or I use the scooters in a store, if I know I am going to be doing a lot of walking, I have no choice at this point. Once I wear myself down it takes me days to bounce back and even then I am not 100% until days later. Fibro can not be cured, it can not be totally treated away and it is just a part of who I am becoming. I after a year am okay with all of this for the most part, I still have poor me days BUT I allow myself to baby myself on those days. One thing I have found, the things I found importance in before my life went out of control no longer matter. No one cares if I don't mop the kitchen floor every day or if the laundry stays behind a bit. And I am not seeing anyone offering to come in and do things for me. LOL I raise my kids and I try to enjoy my life and get to the rest of the things when and as I am able. I schedule out my days to save energy, if I know that I have a big event coming up I rest the day before and I minimize my schedule for a couple of days after.
I am sorry that you are going through this too and that this is a book. Did I answer your questions?
Wanda, where is your pain? What doctors are you seeing? What did they do to give you your diagnosis? Many Fibro sufferers have other complications beyond the Fibro issues. What are they doing to treat it? What Fibro symptoms do you have? Are you on any medications at all?
Here is a website on Fibro for those that may not know what it is.
A short rundown on Fibromyalgia
Bobbie, thank you so much for all this info. I am sitting here crying, just knowing someone actually understands me ( but, I wish you didn't have to be in the same condition to be able to understand me I'm not on many meds right now. My primary care DR thinks my lack of sleep is the biggest factor of my pain.I've had the sleep studies,have sleep apnea. So they gave me the c-pap machine. Well, low and behold, I'm allergic to the tubing ! It throws me into an asthma attach within 3-5 mins.I'm on Ultracet pain pills, which is so mild I have to be laying down and perfectly still for at least an hour or so or I can't feel any effect from them. She gives me about 10/12 Loritabs A MONTH !! She's afraid I'll get addicted! But, actually my pain level wasn't near as bad untill I had to start staying up so late.I could go to bed without DH , and some nights I do if he is very wired from the days work.And he will sleep on the couch, as not to wake me, knowing I can't hardly go back to sleep.But, even doing that, I'm miserable. My pain is all over, at times like this. My body is soooo extremely sore, I can't hardly be touched! Sometimes when my little grandkids hug and touch me, I want to cry from the pain! But, I don't,because times like that are worth it But even when I'm not in these flare-up's, my joints in my hands, my shoulders, and especially my neck is extremely stiff and sore. I stay so stiff that sometimes it's embarressing just to go out and eat because after sitting there for a while, DH has to help me stand up,and then I walk very slowly.Do you have problems with getting over-whelmed easily? I get so confused at times.For instance, I'm in the process of making a audio/video for my DD and her DH.They were high school sweethearts, so I have pictures of them as teenagers on up till now, married with 3 kids.And, of course I don't put my pictures in photo albums like I should, So they are in boxes EVERYWHERE! So, I will start going thru pictures ,and sorting them out, and I get so nervous and frustrated that I have to walk away from it.I know that "normal" people do that sort of thing too, but I do this with almost everything.I can't sit and fiqure up bills for very long; a recipe has to be very simple or I can't hardly fool with it.That sounds weird, but I could go on and on! It's like that old expression," I just can't think straight !" I was diagnosed about 14 years ago, but I had the symptoms several years before. My x made me believe it was "all in my head" because he hated doctors, He was very mentally and physically abusive, and most of the time I was terrified of him.They ruled out all the stuff like lupus,arthritis, RA,and said it was fibro. My DR (at the time) said"I have good and bad news for you. It's not Lupus, so you're not going to die. But it is fibromyalgia, and you are going to FEEL like you are dieing EVERYDAY !!" And, since DH has started this new job, we don't have ins. right now. I tried to get Tn Care and Medicare and was turned down.I ,also, am tired all the time. I think I will call my DR and try the Cymbalta. She's tried me on several kinds, but I have such a bad reaction to them that I have to quit. She's tried me on several anti-depressants, too, but they make me CRAZY !! To the point that I can understand when someone says they have killed someone while under the influence of anti-depressants. I never really knew there was extended treatments for fibro.As soon as our ins. kicks in, I'm definately going to check in to it !Bobbie, thanks again for all of this info.
Wanda, Dying every day? I would tend to agree on some days dying might be better then what I deal with. Then I wake up having a decent day, maybe two if I am lucky and I see why it is worth it to keep moving forward.
Until last December, I was 35 years old, I had this symptom or that and they treated everything at face value up until then. Back hurts, physical therapy. Nausea pills to counter the nausea. Even my eye doctor missed the signs.
The Rhuematologist Dr thinks I likely was born with it and even thought they say it isn't progressive, I beg to differ. My JRA is in remission at this point, so the damage is done as far as that is concerned but I had symptoms all through out my childhood and into my teens of that too and it was never properly diagnosed until I was 35 either. My RA factor is low enough, as not to cause further damage but it is high enough that I have to keep getting tested.
I have the memory issues... They call it Fibro Fog and it is common among people with Fibro. I also have what probably amount to panic attacks too. I get flushed and tightness in my chest. I honestly thought I was having a heart attack last year but every thing came back fine. It has something to do with the chest wall and not the heart and a common issue among people with Fibro too. My mind gets so lost that it is hard to get my focus back and I give up on a lot of things too. I have a lot of half done things around the house. I have the stiffness too. I drop/spill things. I even loose my ballance and fall down and if I am stiff getting up can be a big task. I feel like I am 80 and I am only 36. Add to that that DH has his issues and we are a huge mess and I am a big ball of stress. Which makes things all the more worse.. I use to crochet, I use to read constantly and I use to live on the computer. LOL Now I live to sleep and sleep to live. LOL
Oh and I forgot to add that I am using eye drops three times a day and in between as needed. I drink constantly because I am always dry. Which means I pee all the time too..
Have your read online about it? check these out.
Fibromyalgia Network
FIBROMYALGIA SYMPTOMS
Might look up a Fibro support group on line. I go to Fibro Hugs sometimes to read, I have a membership and have made a couple of post there. But I am lucky to make it here on most days. LOL It makes me sad to read what the ladies there have to say about their lives but it helps so much to know I am not alone in this.
Because I look normal I must be. I was going to say, you wouldn't believe the looks I get when I am out and about but then again maybe you would..
Might need to be looking for a job because I am not sure how I am going to swing the holidays this year, but I am not sure how I am going to manage that either. Did I mention that stess is a huge factor in fibro flare ups?? Honestly, if I knew the drugs I was on I wouldn't want to hire me that is for sure.
Anyway, (((WADNA))) Tons of love. Minute to minute is how I have to live and I plan ahead for everything and I break things up to where I can handle them. (three days to get the bills paid if I have to, grocery store and no house work, Dr appointment and nothing else planned for the day). Oh my what a life.. We can make it through this, I have Faith and Faith helps a lot.
Just and FYI, The stress of your pain is just as dangerous as any addiction to pain medication... Your insides are effected every day your pain is unbearable and you might want to bring that up to your DR too. She thinks she is saving your from addiction but you aren't going to get pain relief any other way. Fingers crossed DH gets insurance soon. Hard to find doctors that don't think you are some kind of drug feened in this day and age.
You might want to reapply for assistance, sometimes it takes more than one application.
Bobbie, thanks again for your insight. I felt a sense of " not being so alone" all day today after reading this. My flare-up is still pretty bad, but I do feel somewhat better.Why do you have to use eye drops? Do you have eye pain, especially due to light? I do.And I have seen several DR's over the years and no one seems to know why. The last optomotrist that I saw suggested Rosacea (sp !)because I have other facial issues .So finally my PD put me on a facial antibiotic that takes the edge off, but didn't fix the whole problem.I wear very, very dark sunglasses, even in the winter. I have to wear them a lot in my house, too. I wear them at times when I watch TV; and almost always at the movies ( unless someone is with us, and them I'm embarressed to).That's one of the reasons that I love the winter months so much is because it is darker and cloudier. I almost hate summer anymore. The airconditioner makes me ache, and the bright sunlight causes me tremendous pain. We keep a lot of our windows covered with quilts and things during the real bright season.Thanks for the Fibro links. I got all excited last night when I read about the Quayfenisen (SP !) I actually use that when I get the resperitory thing going on.And a few times I used it to help calm my jitters and stress, but I was afraid that might be acting like a "junkie" if anyone heard about me doing it so now I feel better about using it.
Dry eyes and eye pain/sensitivity to light are common with Firbo. Most people that have Fibro have eye complaints. Most of the issues are caused because the eyes get so dry. What are your other facial issues? To be able to function it seems that most people with Fibro would appear to be "junkies" to people that don't understand how the whole illness works. Medication is required to function, this is a common thread. Those of us that are not medicated live lives far worse than those of us that are on medication. They wouldn't begrudge a cancer patient, aids patient or even a person with something such as seizure, diabetic or so on the medication that would give them the best quality of life. That is one of the things that we need to come to terms with, medication equals quality of life and that is okay that we fight for that quality of life. You are not alone in this by far and they are claiming they may have found a virus that has created this whole mess in the first place.. So there might be a cure, in the future or at least an more effective treatment for those of us it will help... Big Hugs Wanda..
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