I posted a segment last night about I how I always seem to feel pain just before I go to bed, and I was
asking the group why this happens? Well, I wasn't sleeping well last night, as usual. I started to turn
to my left to lay down again, and the most horrendous pain hit my right shoulder blade and actually radiated down to my right hip. It was unlike any pain I have ever felt in my life! I was so startled at
this type of pain, I started to pass out. So I put my head between my knees and just took deep breaths and the fainting episode started to ease up. I have never fainted in my life from pain. But THIS one was
just unbeleivable! I can't even explain to you what it felt like. Its is starting to ease up now because I am up. But, now I am worried I might get that type of pain again. I am moving around very slowly today and taking it easy. Scared me really bad. Both hips are now starting to hurt really bad and I have those
nodules that come through my skin letting me that inflammation is going on. I truly hope none of you
ever go through what I did last night. Gentle hugs to all of you!! Laurie
So sorry you experienced that pain episode. Whenever I break records, I think it wise to contact (if not actually see) my rheumatologist and have him check me out.
Let's hope that is the worst pain you will ever experience (that way, all future pain will be less agressive and painful), but let's also look at the bright side of having gone through last night:
You got through it...here...ready to fight another day.
If you have another night like this, you now know that you can deal with and get through it. That knowledge should help lessen the pain a tad. Seriously, part of the pain is not knowing how bad it will get. Well, now you know that so the mystery is gone, right?
You have a group of people here who can offer advice on how they deal with similar pain (I keep a variety of tools close by knowing I'm going to need them - moist heating pad, Handheld massager (the one I use is Brookestone - http://www.google.com/shopping/product/9287541057682090137?q=brooks...), breakthrough medication as directed by your doctor, lotion (when I was married, my wife would be at the ready to work through those knots, misdirection device (anything that you can use to help get your focus off the pain and onto anything else - some suggestions are music selections like on a special mix tape/CD/mp3, the remote to the TV with that "special" TV episode/movie/routine that makes you laugh, etc.,). I'd love to hear what other people have nearby in the event of an emergency readiness kits.
Fibromyalgia is NOT a progressive disease. You will not keep getting worse. So, again, remember that last night may have been the worst night you have ever had, but may EVER HAVE! If you think about that, it should give you some relief.
When people in this support group read your words, know that there are people out there who know exactly what you are going through and who will offer up our prayers for you.
I hope today goes better for you. I've had fibro since 1991 so I know exactly what you are going through. I am available to talk or answer questions. God Bless.
hi Marc - good to hear from you. It's not often that I hear about a male having Fibro - but I guess it does happen!
I have had FIbro for over 30 years. I am in the process of seeing a new doctor soon that I am excited about. This website is the best one I have found so far and I intend to stay with it. I have made many friends and it makes me feel so much better when other people understand what I am going through. Most of the time I keep a pretty positive attitude and just get through the day the best I can. But I do have days when I just want to be alone and take care of myself - especially after a bad episode like this one I had. My family is very supportive, but it is complicated explaining to those that have no idea what I am talking about. I am not afraid of pain, as I have lived with it for so many years. But the pain I had last night was so sudden and startled me terribly, that I
just started to pass out. It wasn't so much from fright, as I knew what was going on. The pain just came at me in full-force. I still hurt now, as I move around, but as always, the pain starts to dissipate a little and I can relax. Thanks for your Response. I really appreciate it! Laurie
That truly sounds like a terrible pain episode. You and I are certainly veterans of pain. I've had chronic low back pain going back to 1983, had my first spinal fusion in 1988, fibro started in 1991 followed by Rheumatoid Arthritis in 99, chronic fatigue in '02, spinal stenosis & foraminal stenosis in '07, two more serious back surgeries in '07 and finally facet arthritis and spinal bone-on-bone grinding in 2012. I am literally at the point where there is NOTHING the doctors can do to fix anything that would hopefully alleviate the pain. The best and only hope I have is the Intrathecal Drug Delivery System which is a pump that they insert under the skin of your stomach and fill with medications. The pump is threaded to a catheter which is then inserted directly into my spinal chord.
The surgery was in 7/17/12. So far, I have gotten no relief in the 5.5 months since the surgery. The morphine they gave me did NOTHING in terms of pain relief. I am now on dilaudid (4.5 times stronger than morphine) and am reaching the top amount they can comfortably give. The dilaudid has done nothing. The next medication is Fentanyl (100 times as powerful as morphine). After that is Sufentanil (five to ten times as powerful as FENTANYL - so 500 to 1,000 times as powerful as morphine.
After that, I guess heroin???? Yeah, I'm heading down the highway of I have no idea what is happening!!!
I have some fascinating insights into relationships where the guy is chronically ill, fatherhood/parenting, accepting your mentally ill parents and isolation. Damn, I get all the good topics.
I look forward to our communications.
have a wonderful day, full of peace and happiness.
Hi Mark - you make me smile!! I have been on just about every med you have mentioned without any real success. But I always try to keep on top of what's going on in treating Firbromyalgia. I have a wonderful nurse, Megan, who has just been so good to me. She's never had Fibro - but she has enough patients to really understand what I go through. If I have mild spasms, Flexiril seems to help me quite a bit, but any pain that is really off the charts - so far, nothing has really worked. We have a very stubborn disease, don't we?? LOL I learned a long time ago, to take one day at a time and not worry about 'that appointment that I have in a week' type of thing. Every day is different for me and I have learned to adjust to it. There are times when I have to cancel an appointment because I just can't move at all. I am very grateful, so far, that every one seems to understand and they let me reschedule my appointments. It doesn't happen often, but I appreciate the fact that they allow me to have a little leeway just in case I am too sore to move. Sometimes I just can't believe that I am where I am today with my FIbromyalgia. I was so active. I was the typical California girl at the beach, going swimming and just having fun with my friends. I was studying to be a doctor (my Dad was one) - but I got married (big mistake!!) and had two children that are in their 30's now. In fact, my son, Jason is 32 today. Where do the years go?? Beats Me!! LOL I am also a grandmother of one, from my daughter. I am divorced now and the happiest I have ever been. What's interesting is, that I developed the Fibromyalgia during my marriage. I was under tremondous stress in my marriage, as it wasn't a good one and my ex-husband just put me through hell. No physical abuse, but, mental and emotional. So, I honestly believe that horrible stress can get your body ready to start breaking down a little bit, and I was one of them. I was very healthy until a few months after my second child was born (Jason) then everything just started to go downhill health-wise for me and very quickly too. Right now?? The best thing I think I have ever done for my FIbro, is to connect to this website. Mentally, it has lifted me up tremondously! Giving me hope and helping me to feel not so alone at times when I am in pain. The support system here is truly phenomenal and every day when I wake up, after a hard night with pain, I look forward to getting on the computer and seeing how everyone else is doing. I have been on this site for about a week now, and it feels like I have known all these people for years. I, too, look forward to keeping in touch with you and all others. Gentle hugs!! Laurie
Severe pain in the shoulder and hip are called referred pain. It means something is irritating your diaphragm, such as gall bladder problem or swollen liver or inflammation of the stomach or esophagus. This is not a fibro pain. Remember that we can also get other illnesses. Everything isn't fibro. I have days that I pass out too, over and over, but pain that sharp and severe needs to be checked out.
Hi Sheila - Thanks for responding to my discussion segment. I absolutely understand that some pains that I have are not always from my FIbro. I see my doctor and nurse, Megan this coming week. What has really saved me as far as getting the pains I have and not getting any sleep, is this Website. Mentally I feel so uplifted with the responses I get. It's such a relief to talk to others that know what I am going through. It is true though that with all the Meds I have had to take in the 30 years I have had Fibro, has interferred with my liver and kidneys a little bit.My nurse keeps a close eye on this and I do have constant blood work done. In fact I am going this week to get some more blood work done. Thanks so much for your concern! Laurie
I think you found your answer. Irritate liver irritating your diaphragm. My liver is compromised too, so this could just be a swollen liver. When mine does this, I have to go off all meds and supplements except my most necessary meds to help me survive, and stay away from chemicals in food for a week or so, then it settles down.
Its not odd I do that also. Whether it is pain or illness. I am suprized that I did not sleep though child birth. I am a good sleeper, I just rot at waking up. I had some 48 hour flue I got from the kids a t christmass. Lucky for me rather then felling sick I just passed out for two days. Sometimes it is a blessing.
I am currently suffering from horrible Lower back pain that comes in sudden sharp stabbing pain that radiates through my left hip and down my leg stopping at my ankle. Today I’ve noticed numbness in my toe. Odd I know. Like you I’m having to take it very easy today so that I don’t make it worse or fall especially since I have a habit of loosing my balance on the best of days. I wish I could give you some advice e but truthfully I’m just as scared.
Gentle hugs back to you.
Hi Shana - I lose my balance too. I've talked to quite a few women with FIbro, who seem to have this problem. I have had Fibro for about 30 years, The balance problems started just about 4 years ago. Sometimes I will bump into walls or my feet will have a mind of their own, get tangled up all by themselves, and down I go! When I first get up in the morning, I need to hang on whatever is around me, in order to walk and keep myself upright. It takes me a few hours to loosen up, then I can do the things I want to do - but not always. I need to work 'around' the Fibro.However I feel on a particular morning will determine just how much energy I will have that day. I had to take extra care of myself today after what happened last night. I am still very sore and have to be careful of the way I move around. It's such a hassle that these things happen to us, Shana. We don't have much choice, but to listen to what our bodies are telling us. Fibro itself, I don't think, is life-threatening, so don't be too frightened about what you body goes through. It's just that us Fibros have an illness that needs to be watched over very carefully, and unfortunately, we are very limited in what we can allow our bodies to do. When I think back to how active I was when I was younger, it does blow my mind where I am today, health-wise. If all trigger points are active on my body (which isn't often, thank God), Then I am in serious trouble as far as pain. I just literally can't move. Nor can I lay down or stand up. I don't know what to do with myself when all triggers points are out. Very rarely do both hips hurt at the same time, but on those rare occasions when they do, it is so difficult to get around. The stabbing pains you are feeling, which are very similar to the pains that I got last night, are spasms. Spasms never warn you ahead, you know? Take it easy Shana, please don't get discouraged. I know this is easier said, then done This website is wonderful and I am very confident that the Medical field is really taking us seriously now I am hopeful that there will be wonderful Meds and therapy out there to help us lead wonderful, and hopefully pain-free lives. Gentle hugs (This is the only way to hug us!) Laurie
I am so sorry to hear of this terrible pain, and I totally agree with Sheila's suggestions, it could certainly be a gall bladder attack, please make sure you talk to your Dr right away about this, because we can all talk about this for a long time, only a Dr can tell you for sure!
I am concerned about the 'nodules', haven't you posted about these before? What does the Dr say about these? You know there are autoimmune diseases that have these 'nodules'. I hope you have/are seeing a Rheumatologist, please get a referral to one if you are not currently under their care. I really do believe with all of my being that everyone who has Fibro, needs to be seen by a good Rheumatologist on a regular basis, no matter how good another Dr may be.
I hope you can find a way to make school work, I admire you for 'going for it'! We are your cheerleaders, and though we can no longer do much other than walk, we can still make noise! Woo Hoo! Go Susan!
Please take care of yourself. Sending good thoughts your way!
Hi Sk - good to hear from you again! Hope all is well and painless for you?? (Smile) Yes, I do see my nurse and doctor in a few days. They are both wonderful and Megan, my nurse is now in the process of referring me to a Rheumatologist who has a specialty in Fibromyalgia. So, I am really excited and nervous about seeing her soon. Megan has also set me up to get a bone density test and I have a feeling this particular test isn't going to be good news! I also get regular blood work done to. So I am in safe hands. I will certainly keep you up to date on what's going on. My other rheumatologist wasn't very good and on occasion has been very rude with me. I didn't care for him and I told him so. I explained this to Megan and she got right on it to set me up with another doctor, and she is a woman. Somehow, I feel safer about this. I want to get absolutely everything taken care physically and I want answers also. I am planning to be a lot more assertive this time around as well. Take care of yourself!! Laurie
I pass out from the pain all the time in public at home anywhere whenever it takes over. I also deal with conscience seizures because of my fibro and temporal paralysis from the lower back down. I understand your pain sweetie.
Thank you so much for responding back. This just really depresses me at times especially with my age and the fact that my home support is kind if lacking.
Hi Marc. I feel I have to make a bit of a comment - and I don't mean to be argumentative - when the doctor told me 17yrs ago that he knew what was wrong with me he said the same sort of thing you just said 'its not progressive'. I went until 2007 with the pain not getting worse just the ups & downs fibro puts us through. Then I started into, my little joke, mentalpause. The hot flashes kinda felt good, warming up my sore muscles LOL. About a year after it started I found that my first day off I was in horrible pain, majorly tired seemed I couldn't get myself to really 'wake up'. I felt groggy and every part of me seemed to scream in pain if I didn't move real slow. By bed time every step brought tears to my eyes. I was so into my routine of Wednesdays (1st day off) getting slowly revved up and by noon be at the car wash getting my car cleaned up pretty, grab some lunch and every once in a while kidnap my grand daughter from school and go to the Wild Animal Park or the mall go have some fun with my oldest g-daughter. but I just couldn't get going enough to clean up and get dressed even! By the time I had to quit working (I was a bartender for almost 30 years), I was only working 3 days a week by then, I was spending 2 days in bed and couldn't get myself to go have fun with my grandkids at all. They were so used to coming over to my house and spending days & nights here --- I couldn't rouse myself enough to even answer the phone most of the time. I still seem to be on some kind of cycle. I have to FORCE myself to get up on the first day and sit here at this computer nodding off for hours drinking alot of coffee. Need lincoln logs to keep my eyelids up. By the time I'm up for 8 or 10 hours I'm finally alert enough to carry on a 1/2 way understandable conversation. I still seem to forget really simple words here and there, thank God my friends who still come around to help me understand my stumbling conversations and are patient with me. By day 2 (I will only sleep fitfully on these nights) I can get up and move around a little. I will work on a 'project' for maybe an hour or so then I have to sit here at the computer while recovering. Work an hour, rest for an hour. I'll be up, sleeping maybe 3 or 4 hours only, until the 3rd night when suddenly My body starts twitching and I'm down for at least 2 solid days then start over. I'm afraid to go anywhere most of the time so my friends will call and ask if I need anything before coming over. Some times the pain is so awful I sit here and hum rocking back and forth. Even moving the mouse causes me to whimper. I'm no light weight. I was a heavy equipment operator and a dump truck driver in my 20's & 30's. I was also a battered woman for 91/2 years. I was pretty tough and strong.
I'm not saying every one will go through the same thing, just it COULD. We all know this stuff never reacts exactly the same for all of us. Sorry for being so long winded with this. I did mean to keep it short LOL !!
Laurie, I so agree with you about this website being THE BEST. I do not have a supportive family. If not for a few friends I'm pretty much alone. My youngest son is finally starting to talk to me once in a while. The other 2 and the grandchildren I was so close to won't even talk to me or even email me back when try to get in touch with them. Aww, Well. I keep saying maybe this year. So this site has been pretty much a lifesaver for me. Luv all of Ya!
Hi Jenni - I , too, believe that FIbromyalgia is a progressive disease. The reason I say this is because it started with my hips and then as time went on I started to get it everywhere. Most recently in my ankles and feet. Very painful, at times. I am so sorry that you are not getting the support you need from your family. Have you suggested that they read up on FIbro to see what it's all about?? Why won't your children and grandchildren talk to you? If this question is too personal I understand. You don't need to answer it. It sounds like the family has anger towards you towards the illness you have. When I was married. my ex-husband didn't want to understand what was going on with me. He was a horrible person anyway, so it didn't surprise me that he ignored my symptoms. My son, Jason and daughter, Kim have been wonderful throughout my physical problems. Very patient with me. Most of the time I don't have good days, but on the rare times I do, I take advantage of it because it's so wonderful to be free of pain, even though it's just temporary. I like a clean house, but like you, I can only do a little bit at a time, and then rest, then start up again with my cleaning. I used to be able to whip through the house with no problem. One thing I have learned in terms of taking care of my self is patience. I was always on the go before FIbro hit me. To suddenly have to slow down was not easy for me. I used to 'push' my body through the pain. Well, not a good idea. I have had 'fibro fog' for many years. I trip over my own words when trying to talk and concentration is at it's minimal when I am having bad days. All I can do is just take it really easy and take one hour at a time. I average about 4 hours a night, if I am lucky. It comes from my tossing and turning, trying to find a comfortable position to get in to sleep. If it's really bad, I just give up and get out of bed. I have lost count how many days that I have been through this. I try to be positive throughout it all, but the older I get, the harder it is to do this. I have had Fibro for over 30 years now. I am praying that someday soon, this disease can get under control and possibly eradicated. I try to stretch a little bit in the morning, but most times I am just way too sore. However about 2 hours after I have gotten up, I will start feeling a little bit better and more flexible. I still hurt throughout the day, but it's nothing compared to the pain I have when I first get up in the morning. My heart goes out to you Jenni, and the fact that your family is not supportive of what you are going through just brings tears to my eyes. Big gentle hugs!! Laurie
Jenni. First, hello. Nice to meet you. Second, when I joined this support group I was hoping that I would be able to ask for help, get it and apply it to my life. Unfortunately, over the past twenty years, I spent so much time moderating FM panels, leading support groups, writing articles, talking with people who are reaching out for the first time, etc., that I was worried that I would come off as to authoritative or simply arrogant. The reality is that I am neither. I'm just a guy in pain looking to connect with others who share the same condition.
Here's the thing....you see, it turns out that I can't keep my mouth shut when I see others suffering and I wind up opening my trap and saying things. The idea is not to strutt or show how much smarter I am than everyone else. If I say something regarding FM, it is because it is what I know about the condition. Specific to your issue about FM being "progressive", it is my experience and the experience of the people I know who successfully deal with FM. Could I be wrong about it? Sure, although I've not read anything about that.
I do not mean to contradict or argue with you. I know from my own experience that someone with FM who also has other conditions may experience FM differently. I live everyday with FM, RA and CFS. I've had those three for the past ten years (with those ten years on disability). I am not a doctor, nor am I an expert. I'm just a guy who hurts all time looking for connections to people who can help me or visa versa.
I wish you the best of luck with your condition and hope you feel better.
As you can see, we all feel your pain in our separate ways. I totally agree with Marc about contacting your doctor when something new/different starts. I started feeling pain when chewing, mentioned it a few weeks later at my regular Rheumatologist appointment, and she found a hugh softball-sized thyroid cyst in the side of my throat!
I won't go into the whole other path that's led me down, but remember my tumor when you feel you're being too much of a hypochondriac. You're not. The pain is real. Every time something else causes pain or fatigue, the Fibro's likely to amplify it.
I've fainted from pain several times in my life even before I got Fibromyalgia. It's often just because your blood rushed to where the strong pain was and your poor head's left dizzy, thinking where'd everybody go and why is it so dark in here?
BTW - if your shoulder and hip pain are on both sides and radiating from in the back, definitely talk ASAP to your doctor. It could be something unrelated to Fibro, but potentially serious. I won't go any further, because I'm not about to play doctor, but it's something else I have. Isn't it wonderful that Fibro rarely is a solo act?!?
As others have said, take it one day at a time. When something happens regularly, try keeping track of what you did to ease the pain, and which things did or didn't work. Just as Marc said, I've got my heating pad and extra pills, self-massage tools and such right by the bed. Build your stash, practice what works for you, and always remember that we're all here pulling for you.