for years now i have been having severe unexplainable pain, every now and then they can point to a broken bone, torn ligaments and tendons that have ripped off the bone... but the debilitating pain that I try to hide that causes me to cry so much, I understand. I do. I want to end it all sometimes its so bad. I was just making it through when a doctor took all of my pain meds away cold turkey- shoot me please. but I'm going to keep praying that God will have mercy on me to give me just a little bit of something to help with the pain, and although it seems impossible to make it through another minute of it, we've got eachother. And everyone here is here for answers, to not feel by themselves, so alone which only increases the pain and sickness, we are all here for eachother so don't give up on me okay? I need friends :) My world is pretty desolate, I could use good ppl in my life that get me. :)
I did not mean to compare pain. I have no doubt you are all experiencing extreme pain. My point was to say that a lot of people do not realize the pain that comes with Lyme, so they may take a fibromyalgia diagnosis because fibro symptoms are more widely known. I am confident had I not discovered it was Lyme, I too would have been thrown in the fibromyalgia pool or given a diagnosis of ALS. The current Lyme tests are only 50% accurate. Most Lyme patients do not see the rash nor recall a tick bite as ticks that pass Lyme can be as small as a poppy seed. You can test negative a billion times and still have Lyme disease because Lyme is supposed to be a clinical diagnosis, NOT BASED ON LABORATORY EVIDENCE ALONE. One of the few labs that test all of the Lyme specific bands is a lab called IgeneX in California. If your physicians have not done a lab test through IgeneX then they should. Even then, Lyme should never be ruled out based on laboratory work alone. The diagnosis of Lyme is based on symptoms. Unfortunately, our doctors are not aware of this and often rely solely on laboratory results. I remember thinking I didn't understand what a fibromyalgia blanket was because I didn't know why a blanket would help pain. I can tell you now that before I was treated for Lyme, I changed to using a very soft quilt because heavier quilts put too much weight on my body and it hurt all over. It didn't matter how I lied in bed. Every position felt as if I were bruised all over my body. Crossing my legs hurt because of the pressure from one leg on to the other leg. I am not saying all of this to hurt your feelings or invalidate what you are going through. I am saying you may have Lyme and there may be a cure or a treatment that can alleviate the majority of your pain. And as fibro patients, I do believe you should demand answers. Researchers are getting thousands of dollars and yet we still aren't even close to finding cures for Lupus, MS, Rheumatoid Arthritis, ALS, fibromyalgia CFS. Where is our money going? Researchers and physicians should know far more by now about the causes of those diseases, but they don't. Research is now often based on bringing about a desired result -- one that can often make someone money -- and not based on bringing out the natural result. This is the sad truth. I hope some of you will check into Fibromyalgia and Lyme. Nearly every Lyme patient is given a diagnosis of Fibro before they received a diganosis of Lyme. And if it is Lyme, that bacteria will continue to march around your body and into your brain.
Kudos to you! I've had FM for 17 years and getting diagnosed was heck. Lyme disease was the FIRST thing they checked. I saw so many specialists and had so many labs done, I was dizzy! There is nothing scarier than being in extreme pain and not knowing what is causing it. Doctors don't like to diagnose FM and most people do go through extreme testing to rule out any other serious illness.
I too feel the choking sensation a lot. I can't wear anything tight on my neck anymore (turtlenecks have to be a loose). I have had hot flashes for several years, but attribute it to menopause :-(.
If you are having problems with your legs, it may be Restless Leg Syndrome. I used to be awake all night, near tears with leg pain. I would drive my seatmates on planes crazy with my constant movement to relieve the pain from sitting so long. Started taking Ropinorole and problem solved.
I have been in more pain for the last month too. The changing weather stinks. I just moved to Alaska, so we will see how this winter goes. Usually I am just effected during the change, but never had to deal with extreme cold for an extra long time.
Wish you all a good day.
Before I received my diagnosis of fibromyalgia (among other chronic pain problems), I WAS tested for Lyme disease - in fact, I was testing not once, not twice, not three times - a total of FIVE times!!! And each and every time, it came back negative. I never had any of the other symptoms that would pinpoint it as possibly being Lyme, such as a bulls eye rash (I realize that not everyone gets this rash, so even though I didn't have it, both I and my doctor still wanted to rule out lyme). I had never found a tick on me, even though I was living in an area that was highly populated with deer and the deer tick was very prevalent.
Not only was I tested for Lyme, but also went through HUNDREDS of tests, trying to find out the reason for my horrible, debilitating pain and fatigue. I would say most, if not all, of us suffering with fibromyalgia have gone through this process. So I was a bit upset when you basically said that us, as fibro sufferers have "accepted" our doctor's diagnosis and pain and haven't looked further into what may be a cause of our pain.
I was also very upset reading your comment about "not knowing what pain is unti you have had Lyme disease". I, too, don't mean to be rude, but I think it's pretty ignorant for you, or anyone, to say that fibro sufferer's pain can't or isn't as bad as someon who is suffereing from Lyme disease. For one person to say that their pain is worse than someone else's simply because they have received a different diagnosis for the reason of their pain, I think is absolutely horrible. I'd say it's almost as bad as some doctors out there who still don't believe that fibro or fibro pain is real and they continually tell the patients who come to them for help that "it's all in your head - you can't be in pain because we can't SEE a reason for your pain". HOG [email protected]
! MY PAIN IS MOST DEFINITELY REAL AND ANYONE WHO DENIES THIS, I OFFER FOR THEM TO WALK IN MY SHOES FOR SIMPLY ONE HOUR AND THEN TELL ME THAT I AM NOT IN HORRIBLE PAIN!!!!
I apologize for ranting and yelling here or for appearing to be rude - I honestly don't mean to - this "topic" just hit a nerve with me.
I guess my main points are:
a) I believe that most, if not all, fibro patients have gone through a LOT of testing looking for other causes of their pain and fatigue before "accepting" the diagnosis of fibromyalgia. That, in fact, is a way of "diagnosing" fibro - ruling out other possible causes.
b) NOBODY can or should say that their pain is worse than someone else's simply because they have received a different diagnosis or found a different reason for their pain.
I apologize if I've offended anyone with my post.
i have had underactive thyroids, me,fibro for nearly 11yrs, n iv never heard of lyme disease. yes the pain has increased over the last four months, my eye sight is totally decreased, i went to the eye optitions n she told me i will go blind befor my time, wot a lovly thought. anyway thank you for letting me know about lyme , i will look into it.
there has to be some thing out there that can help everyone get a better understanding of fibro/me.
why are we in so much pain with so little effert of doing nothing ?
Sorry to hear that none of you seem to have tested for Lyme disease. Fibromyalgia has no known cause, and Lyme disease is more and more looking to be the cause in large part of many of these disease for which they know no cause -- or cure for that matter. It's not impossible to believe such a thing when you consider Lyme is a bacteria and the longer it stays in your body, the more damage it will do. When you speak about pain, I'm thinking you have no clue what pain is until you have had Lyme disease. I don't mean that to be rude. I mean that to try to get you to realize how serious Lyme disease is, and if there is any chance you have it, it will continue to attack your body until it kills you. So if your pain really is that bad, you need to be tested for Lyme disease. I get the pain every time the storms come in as well. This happens in Lyme disease too. At the very least, look up fibromyalgia and Lyme disease. You will be surprised at what you see. I have been on antibiotics since December and have HUGE improvements in muscle cramping and pain as well as joint pain and other symptoms. I can't imagine just accepting a diagnosis where there is neither a known cause or cure when there is another disease that mimics fibromyalgia and may very well be the cause of fibromyalgia. It's just frustrating to me to watch people accept their suffering when they haven't looked into every avenue.
I have also noticed a terrible increase in pain this winter. I never realized that the weather could play such a part in my fibro pain. I just took a week vacation to visit my mom in Hawaii (had never been due to flying phobia), and although my pain did not go away, I can say I noticed a definite difference. My rheumatologist said I may feel better over there.
I came back to Reno three days ago and my pain is steadily increasing back to where I was before I left. Tonight is awful, pain is everywhere, stiffness etc...nothing to do but cry and hope I feel better in the am. Think I'll go visit again in six months and see if It was just a coincidence, if not I might actually consider moving. Anyone want to come :-)
I'll do anything to feel even a little better! Hope you all have a better week. Sounds like everyone is feeling worse lately :-(
i will keep u all posted,,and if ther is anything i can share with u all, i will, its amazing,this pain seems to be traveling, its all down my rite side now,,iv got realy sharp pains in my hip and upper buttucks now.i feel abit like a roullet wheel, where it lands no one knows ha,,until u feel it,that is.anyway thanx to u all for ur support,ill keep in touch n let u know how i go on, hope we all feel better soon. xx
Your not alone, it is very difficult to cope when the pain has no visible origin, it's just there. Trying to get anyone to believe how bad it is and that we are not wimps it just wears you down. We are all looking for some kind of relief. Let us know what your pain specialist has to say. I don't have access to anyone yet that can help in my area. Good luck and definately keep us posted.
sorry for delay in reply,,iv been in hospital, yet agian,,this time the pain was so intense they susspected i had a blood clot,,also,im having a scan don on my liver,and being refered to a pain therapist,,i dont think they really know whats causing the pain,just know iv had enough.im not soft, but i cant seem to get mobile and stay mobile,,for some reason i cant bounce back,so to speak, this episode has realy wiped me out.stress and bad weather do play a big part, but im tryin to think posative,lookin forward to spring,planning how i can try to socialize more.and im keeping warm and resting.just hope this pain therapist can help me. hope everyone with this horrible pain is coping better than me. xx
Moving to the desert wouldn't help at all - extreme swing in temperature each and every day! Boiling hot all day, freezing cold at night... You need to move to a country near the equator for year-round mild weather. I'll come too!
I didn't have "spams" I had "spasms" lol. Just wanted to clarify that. Also wanted to let you know that night sweats are common in Lyme disease as well.
If you have not yet seen the movie Under Our Skin, you need to see it. Both fibromyalgia and chronic fatigue can be caused by Lyme disease. Lyme disease is caused by a bacteria, Borrelia Burgdorferi and is transmitted by a tick. There is also controversy over whether it can be sexually transmitted. Before I was diagnosed my muscles were hurting me so badly. I would cross my legs and feel pain from one knee pressing on the muscle of the other leg. I couldn't sit cross-legged. I felt bruised under my skin even though there were no bruises.
I went snorkeling which I had done 5 years earlier and had spams so bad in my calf muscles that I thought I had DVT. It wasn't DVT. It was Lyme disease. It was getting worse as I went undiagnosed and I feel sure I would not be walking at this point if I had not been properly diagnosed. Lyme disease affects people differently because it can invade any organ, including the central nervous system and brain.
Since starting treatment for Lyme disease which is long-term antibiotics in my case, my muscle cramping has improved 75%. I don't hurt to the touch as much as I used to. I am not done with treatment as it may take up to two years, but if successful this can be cured, unlike fibromyalgia which you have to live with for the rest of your life until they figure out exactly what is causing it.
One way you might be able to tell if you may actually have Lyme disease that is causing your fibro or CFS is that when you first take antibiotics, specifically the penicillins, you will get a worsening of your symptoms. The joint pains and muscle pains will get worse. You may get brain fog, ringing in your ears, depression, etc. This is normal in the treatment and it is medically documented and occurs in the treatment of Lyme, Syphillis and parasite infections.
It's called a jarisch-herxheimer reaction. Next time you are on antibiotics pay attention. If your symptoms get worse, you need to be tested for Lyme disease. ILADS.org can provide you with information on symptoms and treatment for Lyme disease. I never knew what it meant when I heard they made fibromyalgia blankets. I always thought that was the strangest thing and didn't understand the concept. I do now. I still don't know why they work but I can tell you that when my muscles were so bad, there was a quilt an in-law made for me that helped soothe those muscles, not entirely, but it definitely helped. Why that works, I do not know, but it does. Sorry to be so long, but there has been no cause yet found for fibromyalgia so it is not impossible to think that it may be an undiagnosed bacterial infection that is causing your fibro. Know that I am not saying that fibro exists. I absolutely believe fibromyalgia is real. What I am saying is that the fibromyalgia is triggered by something and in some cases that may be Lyme disease.
I definately notice an increase in pain during the winter. I also get bad when the weather changes or the humidity rises. I wish I could convince my boyfriend to move to the dessert. :(
hi all yes i find this cold weather makes me worse with the pain i have had to use a walking stick ( i hate it ) but needs must i aslo find i lose consontration and memory loss i find myself in a shop a carnt think what i went in for i must look really gormless s..
Just read your post, i dont really have a choking feeling, but i cant have anything around my neck at all or it make me feel sick. But all your other symptoms i can relate to. I was diagnosed with fibro a few years ago, and one thing im concerned about are my night sweats, they are pretty bad. i wake up drenchd in sweat. At night im cold but having these night sweats! i hate it! My legs ache alot and burn. I can feel the heat coming off of them alot. And just this last month ive noticed ive been getting dizzy. ugh just one thing after another! I have other medical problems, too long to list :P back problems,hip,one leg is longer are the more seriousones.but i can def relate to your issues. It seems there would be some sort of medication to help night sweats...they come and go but they are a problem. Def not my biggest problem but very annoying.
I'm only on Lyrica and Cymbalta for pain - doesn't help much. Is anyone else taking Lyrica and getting a bad rash? My anxiety makes the pain worse I know but I wouldn't be anxious if I didn't have so much pain. My circumstance is a rather long drawn out story. I started with neck and shoulder pain a year and a half ago. They told me it was just fibro. I couldn't take the pain any longer and checked myself into the hospital for anxiety and they did an MRI. Next thing I knew they took me off my anxiety and pain meds and I was to major hospital for disc fusion on my neck. If I had waited for my neurologist apt. he said I would have been paralyzed as my spine was swollen from C3 - C7. Now I get anxious for no reason, it's automatic when the pain hits or I can't distract myself (which is more often now with the pain) I went through some nasty reactions to drugs for about 4 months including withdrawals. One medication almost killed me as the pharmacy gave me an overdose. Am just starting to come back from all this but it made the fibro 10 times worse. I am going out regardless so I don't get depressed any further but my walk is wonky, like the floors and walls in a fun house and have a constant ringing in my ears. Am also on Remeron for sleep. Dr. says it's Lyrica for the rash but that may be because he was the one that prescribed the Remeron. I have severe tinnitus so loud places like the casino I tried to go to yesterday make the pain a lot worse and I think I tighten up all my muscles so squish the discs in my neck. Long story - sorry.
Can you take whatever pain meds you're on before you get out of bed? Keep some water beside your bed and take them when you wake up and then give yourself about 1/2 hour to relax in bed while they start working - it might help to at least cut down on that initial shock of pain.
Can anyone help me with the morning anxiety that comes from waking up every morning from a good sleep to stand up to the excruciating pain that is a shock to the system .
My GP put me on Magnesium to help boost my sleep. You try one tablet first depending on your bowels *sorry for being descript and increase as long as you don't end up running to the bathroom. Worked for me, finally getting better sleep. Waking up is always a shock and brings on the helplessness. My pain is bad enough I can't get out for swims now and walking is difficult. Unfortunately for me my anxiety increases my pain and until I can get that under control it won't get better. When I'm anxious with the pain my spine tightens up and compresses deteriorating discs and causes a lot more nerve pain, burning and prickly. My son is getting married this summer as so concerned about what my condition will be by then. Am going to start seeing a psychologist this week. Wish me luck.
It's extremely hard being in so much pain when you are alone. I am married but got so bad with the pain I didn't want my husband to leave the house. This site has helped when I can't distract with anything else. I have been feeling extremely down for 3 months now. Sounds like you've been trying to keep active, distraction works best. I'm only getting in the middle of this conversation, are you on anything for the pain or the depression which sounds like your starting to have.
hi cas,,thanx ever so much for ur post,its realy lifted me, i know we are all here for each other,but u actualy saying it,,just giv me such a lift,,thanx again,,i must admit i am feeling very down at moment,,it just seems never ending,,pls dont think im soft,,im not.realy,i can stand alot of pain,,but this is worse than ever,,and being alone so much doesnt help.roll on spring hey,, viv xx im not sure how to have a 1 2 1 chat on here.
Hey - I also noticed that the recent weather has caused my pain to get worse. Also started talking lycra a couple of months ago and getting used to that one (my dr put my on 300mg twice a day so getting major side effects)
Vivb53 your not alone and you always have us to talk to about how your feeling. If you ever want a 1-2-1 chat just pm me and we can have a chat xxx