Hello, and thank you for any help you can offer me.
I have been feeling badly for almost a year. I have been referred to so many doctors, and I have had so many tests and labs run. Everything is "normal" except for my increasing ANA titer. I have had Hashimoto's for 25 years. It has been controlled by meds. Lupus, RA, all the other autoimmune disorders have been ruled out multiple times. They keep testing and testing.... negative, negative. I have been unable to actually get any diagnosis from all of these doctors, but several have mentioned Fibromyalgia. I have researched on the internet and bought several books to read up on it, but somehow I cannot figure out how I really fit that profile or definition of FMS.
Most of my pain is on the left side of my body. My left back specifically. It has been up my neck into the lower side of my head, it has been in my shoulder - especially around the area of my shoulder blade and along my spine. It has been in my left "fanny" (buttocks). My left elbow. Only for a week or so did I have a very tender spot on the right side of my back (between spine and shoulder blade). I have not slept through the night in 11 months. This pain is sometimes so intense that I feel like my left lung or throat are being attacked.
What does Fibromyalgia pain feel like? Does anyone primarily have FMS pain on one side? Have you ever heard of that before? Does the pain feel like it is in muscles? Or nerve pain? Does anyone get these knot-like spots where their tender spots are? Maybe my right side hurts, and maybe that side just has a higher pain tolerance??? How do I know that this is really FMS and not something else that we are just missing?
I do not know what to do. I have become so discouraged that today I thought I would just stop going to the doctors altogether because all they do is draw more blood, run more tests, and tell me everything looks okay.... then they say, "maybe it's like fibromyalgia...."
I would appreciate anyone's input on the different ways FMS pain can occur.
Thank you. I am trying to keep on hoping............. if I could just know something......
Rigelbee,hello ive read your post and you talk about lab work.have they done mris,of neck cervical and thorasic spine?my pain also started on left side it is still worse on left side,but they tell me i have it on both sides just worse on the left,if they have done mris and found nothing i would consider finding someone who specializes in fibro,not somebody that is just giving you a name to get rid of you.do you know what i mean,i know its hard to think straight when your in that kinda of pain,is there someone who can help you?my daughter has been a great help lately because when i get bad when its over i cant remember as well as she describes.you need help and it doesnt sound like your getting it.please keep me posted,it could be so many different things but if it is fibro you have stumbled onto some of the greatest people on this board. marywoo
Thank you so much for responding. Thank you HUGELY for the information you have given me - especially for the little fact that your pain started on left side. That is why I kept thinking "it can't be fibromyalgia ...because it isn't on all those 18 spots."
Yes. I have had cervical, thoracic, and lumbar MRI's. They showed minimal degeneration in C-5 and C-6 as well as L-5 / S-1. The physiatrist and neurologist say it is not enough to be responsible for my pain. Although, the neurologist is doing nerve conduction tests Monday just to "confirm" his belief that my pain is not related to the MRI results.
I have had CT scan. I have had ECG's. I have been to rheumotolgists, internists, neurologists, physiatrists, chiropractors, physical therapists, etc. etc. etc.
I am sure others before me have felt like there was something horribly wrong with them before their diagnosis. I guess that is where I am. Until somebody actually decides that is what I have, my mind is just going to run and latch on to anything and everything. I need to figure out if there are any doctors here (Hawaii) that are good in dealing with FMS. I don't know anyone here that has this, so I am just calling cold-turkey to different doctors and praying to find someone. I like my primary care doctor, but he is very methodical and careful not to jump to anything until he is certain. I KNOW he accepts FMS because he has mentioned it to me, but I feel like I will go crazy waiting for him to come to the conclusion that is what I have.
Your information that you had greater pain on the left side is the first I have ever known that FMS doesn't have to be equal all over those spots.
Hi. I too am a newbie on here but not a newbie to pain. I have fibro and I have all the symptoms. I hurt on both sides equally, but my right elbow has always hurt more than my left. I have sooo many other things going on too so I may not just be describing the fibro symptoms. Like you I have DDD in total spine. Have had neck surgery with cadaever bone, lumbar surgery, and have a spinal chord stimulator in low and thorasic. My hip on right hurts more than left but my left buttock and left leg hurt a lot also. I had 9 surgeries in 2 years with all this stuff and still have more to come. I think I can tell you about how the fibro feels on its own though. I first started telling my Doctor my skin hurt to touch. I mean really hurts to touch. When they take my blood pressure I almost cry. When they put on a rubber band to take blood I also do. Mammograms hurt so much I do cry. I wake up during every colonoscopy! They say they have to give me more meds than anyone else. At one time I was put in the hospital for 7 days with just pain. Finally after I had been on morphine for about a month, they finally put me on a pain patch called Duragesic. I couldn't live without it now. Not just because of the withdrawals from it, but it has made my pain so much more tolerable. It hurts real bad to push in with 1 finger almost anywhere on my body. Not hard just barely. My Dr. said it was my muscles that were hurting. Do you have a very bad memory? I sure do! I know my DDD in my neck made my corresponding hand and arm hurt and go numb. Lumbar DDD makes my hip, butt and knee hurt on my left side. I am so tired all the time but I also have hypothyroidism and lupus so I don't know which is causing that. My neuro surgeon said DDD can cause a lot of pain on the side it may be pressing the nerves on. Nerves can hurt so bad. When I had my neck surgery and I woke up, it was like they had removed my nerve. It didn't hurt on my left arm anymore just my hand but I also had carpal tunnel and that went away right after surgery for that. I also have osteoarthritis grade IV. It can sure make any joint feel real bad. I have it in both knees and hips and jaws. I know how frustrated you are. I have definitely been where you are. All I can say is keep trying to find the right Doc. I went through about 20 in 2 years. Finally got a new Dr. and went to a new Rheumy. and they found Lupus and other stuff. My pain management Doc is the one who diagnosed fibro but many had said I had it. They can't do much for you other than find a med that can help. Ultram didn't help me much. Neither did any of the others or I was allergic to it. I sure feel for you! I would try to really follow up on spinal issues. Luckily I had a good neuro and he said my tests (MRI etc.) showed a little trouble, but he thought he should go in anyway. He said once he got in there he found out why I was hurting so bad. So don't trust MRI's or many other tests either. Almost all have been showing just a little something until they get in there and are amazed at what the have found. Find a surgeon who will listen more to you and your symptoms than test results. A good one will! GOOD LUCK AND KEEP ME POSTED.
Have you tried a chiropractor and massage? Sometimes I get a severe pain in my left shoulder blade, but never in my right shoulder blade. I know it's from how I sleep. The chiropractor can usually relieve the pain. Right now, the back of my neck on the left side has a sharp pain, my entire neck feels tense and tight, my mid back hurts, and my arm muscles are "tired". I don't have much brain fog right now, but don't ask me to do anything complex or with multi-steps. The muscles on top of my shoulders feel like hard knots and are painful.
Here are some of the ways my pain occurs, it's a mixture of fibromyalgia and other things, with varying degrees of severity at any given time:
1) pain in all my joints, knees, fingers, the bones in my fingers hurt, and my joints swell. I can barely lift my leg to walk up steps. My knees feel so unsteady, they feel like they will give way. I can't hold my hairbrush. A description would sound like arthritis.
2) My skin hurts, a slight bump feels like a hammer hit it, a washcloth feels like sandpaper. I had to stop allergy shots due to the pain. This is apparently a common fibromyalgia symptom.
3)My brain is foggy, I lose my executive functions, can't make decisions, have severe ADD. Can't make heads nor tails of a book.
4)The muscles in my arms and legs feel "tired" all the time, I am worn out from going up a single flight of stairs, like my muscles have been working all day.
5)depression, cry easily over small stresses and crowds, even waiting rooms
6)constant muscle spasms, always in my back, and sometimes in my calves and toes
7)the rheumatologist pushed on 18 points, and 14 of them hurt. Apparently that was something he used to diagnose the fibromyalgia.
9)all the anxiety and social difficulties that come with Asperger's Syndrome
10)hips, back, and neck constantly "out of alignment" with pinched nerves causing numbness and tingling, sore spots, and things not moving correctly, like my neck hurts really bad to turn my head to look behind when backing up. Headaches. When the hip is bad, I hobble around, and am constantly wiggling trying to get relief from the almost constant mid-back pain.
11)overall pain in my back, feels bruised (this is an allergic reaction to phenol, which is in canned foods)
12)sinus swelling, face swelling, eye swelling, stopped up nasal passages, stopped up ears, horrid painful gas, diarrhea, sore throat, lots of phlegm
13)constant itch from poison ivy circulating in my system and oozing out in various places since at least 1980 (I use Zanfel and benadryl gel to stop the itch)
15)wake up tired, body doesn't move very well
16)poor memory all my life
17)TMJ which was never relieved since I was 18, so I created a habit of not letting my teeth touch
It is obvious that something has gone haywire with my immune system, but I'm not sure that anything can "fix" it, so we're focusing on relieving the symptoms and removing the substances that have become toxic to me right now.
I discovered gluten was creating the bulk of problems 1, 2, 3, and 5. I have two friends with fibromyalgia who also notice a decrease in pain when they avoid wheat/ gluten. My vitamin D was super low, and taking a mega-supplement prescribed by my doctor has helped with 4 and 5, and should help with 14. I see a chiropractor every week, which helps with 10, also he gave me a TENS unit which helps when I can't get to his office as quickly as needed. I'm sure massage would help my back, but insurance doesn't cover it. My ENT has me on allergy drops now (have been on and off shots for 30 years, and have had allergy problems since 1964). They help with 1, 2, 3, 9, 11, and 12.
I find time to be totally alone with no social contact for a day or two at a time, which helps with 5 and 9.
I don't know how others with fibromyalgia are, but I have so many symptoms, I don't know which one goes with which diagnosis! I just try to do whatever it takes to reduce my pain and stress level. My psychologist helps me cope with all the stress of constant pain and feeling overwhelmed with life. I don't normally feel the severe fatigue that others mention, mine is just a low energy level. I can keep moving, but slowly, and can last a long time if I pace myself.
My various doctors never talked to each other, to see me as a "whole". I recently got a referral to a new Internal Medicine doc, who specializes in "diagnosis and treatment of complex medical problems, including multi-system diseases". She discovered the vitamin D problem, and sent me to several new doctors to find/rule out various diagnoses. Hopefully, she can put all the pieces together and see the big picture.
I hope you find a doctor who can help you find relief for some of your symptoms.
Last edited by roses4lace; 06-24-2008 at 12:12 AM.
Thank you Roses4Lace and Empressofq13. Thank you for taking the time to respond to my plea for help. I have tried to be "brave" for 12 months and go this journey alone. I kept hoping that some one would figure something out and just FIX ME. When I finally broke down and sent out this plea for any one to just talk to me about it, I had no idea that several KIND people would take the time to let me know that I WAS NOT ALONE. Just thank you all very much.
I am sorry for your aches and pains. I wish I could help. I understand, but I wish I could help.
I am going to keep moving forward to see what happens next in this mess. I am continuing to see my doctors and follow up with whatever or who ever he sends me to. Hopefully, some where someone will have answers for me.
I will stay in touch. I will let you know if I learn anything new. Until then, please know that I appreciate you all very much.
I noticed you posted in April 2008 and was wondering if you found anything out?
I have right sided swelling and pain, I had back surgery in 1999. Since then I have had MRI's with not much showing other than arthritis in my neck and lower back. I had the ana test which showed a very low titer for lupus. In a nut shell Dr. said I don't have enough symptoms to have Lupus, must be fibromyalgia.
My right knee has been swollen for over a year, x-ray shows nothing. My right arm, hand and face has been swollen for about 2 years now. My feet and hands turn purple (mostly my feet) in the summer when it's hot here.
My right arm is now a huge issue because the pain is very intense. It hurts so bad when I move it to the back of my body (undoing bra, drying my back etc) sudden movement to the side (when I get silly and don't remember that's going to hurt). I have notice lately I get chills when it's 100 outside and air is set to 80.
I recently went to get contacts and my right eye is worse than my left. Was told I have a stigmatizem in both but the right eye is way worse and needs special contacts.
Kaiser now has a pain management program I am in. I am trying accupucture, it's not helping with the swelling but I do feel a little better, not so tired.
I would love to hear from you.
I have been on a trip and did not take my computer with me. Sorry it took me a while to read your post.
I have not really found anything new about my "mystery illness." I had several pretty good days in a row last week and almost thought that I was going to be "normal" again, but alas, I was mistaken.
I am continuing to be monitored very closely by my PCM. The latest blood results showed my ANA titer dropping down a little which was good news to me. My sodium levels were low and my thyroid numbers were off, so he (PCM) has re-adjusted my thyroid meds.
I wish I knew more to tell you. Although a rheumatologist diagnosed FMS several months ago, my PCM is very cautious and will not concur with that until he is certain. He told me that it is possible, but it is also possible that I do not have it and all this may resolve IF I GIVE IT TIME.
I am tired and not very patient. School will be starting up for me again. I hope to make it one more year. Then I may have to retire.
I hope your health is improving and your pain is lessening. I am sorry for all that you are going through. However, it helps to know that you are not alone. I am thinking about you. If you find any thing that helps ease your pain, share it with me. I will do the same. It is odd how it is your right side and my left side. Are you right handed? I am left handed, so I wonder if that has any thing to do with it. Can I ask you what your ANA titer was? If it is only slightly elavated, I have read that stress can have a profound impact your body's immune system. I think it must be true because I have begun to stress less about my "mystery illness" and I have felt a little better (and the ANA was lower).
Sorry I haven't replied sooner but I guess I have been a little depressed. Trying to sleep in and go to bed earlier.
Anyway, My Histone ab was a very weak positive at 1.1. About 4 years ago I was getting pneumonia every 6 months or so. I had one year I wasn't sick at all but, I could barely move off my couch, extreme fatigue set in for a year. I thought something was wrong, really wrong, like I was dying wrong! LOL
So that's when I started my quest. All my blood test came back with very low this and that's, ana low, I can't remember but my white and red cells came back off as well but again not enough to indicate what could be wrong.
I was a routesales women for wonderbread/hostess yes the cupcake lady. I was loading my truck in the morning and twisted wrong, I have not been the same since. It is a teamster union job and yes I was written up for hurting myself (Crazy). At that time the only thing hurting was my lower back.
I am right handed and it is funny that it's your left and you're left handed. I really don't get it, I have done a fair amount of research but it seems to me (I am not a Dr.) but I just can't believe it is FM. Wishful thinking? maybe! If you cut me down the middle nothing on my left side hurts ever. Everything on my right is very painful and swells. My right knee has been swollen for over a year and nothing shows up in an x-ray?
There is one thing that has kept me going and pushing myself over the last 9 years and that is my first grandson Joey. Joey had a stroke at birth and as anyone can imagine he has a lot of medical issues, CP, Autism, seizures, Microcephaly (his head and brain are not growing at this time) speech, you name it he has it. I call him our miracle baby. I know people look at him and think oh how sad and must be hard for those parents. Yes it's hard but Joey is our family's blessing from god. Joey was not suppose to live, he walks, he runs and is now trying to talk. His first communication with us was signing MORE! My daughter and I took signing classes, at 2 years old he wanted more milk! What a blessing! Joey has more love in his heart than anyone I have ever known and is never afraid to show it. Would we be happy if Joey was normal? Yes but we are not sad his not. What if god sent him to another family that put him in a home and he never knew what love was? The lord knew we needed him as much as he needed us, a blessing.
Sorry to go on but I have found, for me, sometimes I need something to hang on to, something to keep me moving, something to get up in the morning, something that needs me just as much and Joey is it. I take him to school (I don't trust bus drivers) and I pick him up and watch him until daddy gets home from work. We work in the yard together, I plant, he picks what I plant, we have cookies and milk together or play on the computer together.
Anyway, I am trying vitamins so I can keep up with Joey. I have read that magnesium with malic acid helps with nerve and muscle function so I am trying it as well as a b-complex for energy.
Keep in touch and let me know how you're doing.
I have had fibro for 23 yrs. and have recently found out fibro is a catch all phrase for any and all muscle and joint pain that can't be defined by any tests. Irritable bowell is the same.
I had both it would manifest itself as muscles that burned, felt bruised without touching
( many doctors did not feel for spasms), and pain would radiate from one muscle spasm to another spot in my body. Ex: certain spasms in my shoulder blade would radiate through the front of my chest.
I tried chiro's, massage, morphine shots, lidocaine shots in the spasm. If you rub (deep tisssue massage) on your spasms you can get them them to reduce down to the size of a pea and do everything you can to stay relaxed it will ease up. It took me years and not working so I could go out to do a social event and have 2 days of rest etc. you learn your limits and if you can pay close attention to you body speaking you can slow the pain levels down.
Recently I had some family issues which ratcheted up all my pain areas and had to go to a pain clinic and have pain shots (especially those nasty buttock spasms!), plus I did some warm water pool therapy and quieted everything down. The other thing I have found very helpful is Flector Patches (a little expensive but worth it to me.), they are 4x6 pads that can be cut up and applied on worse pain. They last 12 hours and help you sleep through the night so you don't feel so tired in the morning.
Good luck BTW Fibro Fog is the worst at all the wrong times, I never know until I am up and talking with my hub whether my mind and mouth are going to be connected, or pretend to not know each other at all. Then my husband and I play charades if I get stuck
Its been a while since anyone has written on this site let me know how you are doing now.
I am so sorry for your pain and i so know how you feel.
Fibro is usually felt on bot sides of the body below and above the waist not always at the same time.
Two years ago i got diagnosed with myofacial pain syndrome, an extremely painful conditions that can come with or without fibro and is often felt in one part of the body or one side, you get extremly sore spots on your body that are agony and sometimes if you can reach them you can feel lumps under the skin and to press on them it is so painful.
It can start from an injury of one muscle or an inactive muscle hence why fibro patients tend to come down with it as inactivity interferes with the structures of the muscle.
MPS for short is a neuromuscular disorder some say or an autoimmune disorder in a sense. Its not the muscle that is the problem it is the thin casing that wraps round the muscle that is the problem it gets all tight and bunched up into knots and then often squeezing nerves that run through the muscles causing more pain, so muscle relaxants dont work as its not the muscles, anti inflamms can work as there is alot of inflammation caused or injections into the tissues triggar point injections, but the best threapy for this i have found is myofacial massage a trained massage person can gengly or roughly depending what way they want to work mine goes gentle and that works for me, smoothing almost out the bunched up lining, mine is chronic and been left untreated for so long it has spread half way down my body and is so painful and at the moment as i have a bad fibro flare and am bedridden the worst possible thing for mps and have sensitive nerve pain on my left leg and cant bare to be touched i cant have treatment at the moment but i am hoping to go into a medical and holistic hospital for a 12 day stay to get me mobile again and there they have trained people in fibro,c.f.s.ms and mps so i am hoping they will help.
over here in the uk the drs have no idea how to treat fibro really let alone mps and its only the alternate threapys that seem to have a clue in how to treat them and know so much about them but of course that cost money , money i dont have but if you can some how get it on your insurance then i would contact mps massage threapist, most massage threapist know about mps but not all do and make sure you get one trained or they could go in alter heavy and cause more damage then good.
of couse i am only guessing this is what you may have so your need to talk to a dr or pain clinic or massage threapist as they can read your body like a map and tell you what is wrong and help more then any dr i have ever seen and if i was rich i would not be bedridden for sure.
good luck hope i helped abit i am not well so please excuse my spelling errors grammar and explanations lol. keeps us informed. hugs
I do have myofacial pain syndrom and autoimmune issues. I also have bi-polar which makes it hard to figure what is causing what since symptoms overlap in almost every disorder. My mom had rhuematoid arthritis, fibromyalgia and sjorgrans all autoimmune diseases. My sister has autoimmune, lupus and fibro. We inherited a cess pool of auto crap.
I have tried Neurontin for myofacial and had side effects of arms jerking etc...etc...etc.
Thanks for checking in truly those pain patches are better than sliced bread!
I haven't read all the posts but what I did read sounds like you are getting lots of info!
I'm sure someone mentioned this but definitely ask for a referral to a Rhumetologist. If by any chance they are not any help, see another one. Don't give up.
I was hit with fatigue & brain fog (feels like living in a dream) back in jan 99. I spent almost 12 yrs trying to figure out what was wrong. I usually walked out of a Dr's office trying not to cry. Each time it was like a slap in the face. It was hard enough trying to explain what was going on with me & have a Dr look at me like I'm nuts. They just want you in & out of their office so they don't have to deal with ya. I thought I found a good Dr once, she just liked to run tests I recommended & nothing more.
Anyhow, I seen a dr last yr, the first time seeing her I walked out upset. I knew she didn't take me seriously. About a month or 2 later I tried again, but this time I brought my mom She knows I haven't felt well in a long time. I told my Dr that I read about Fibro & it fits me, but I don't have all the touch points. My fibro symptoms at the time: I hurt my back in 05 but managed. My back started hurting really bad about December of 09. Then I was getting headaches daily, usually 5 days a week atleast. I'm used to my body being heavy, sore, tired, have since 99... But then my upper back, shoulders, & neck started hurting. That's when I was diagnosed with Chronic Fatigue Syndrome & refered to my Rhumetologist. My Rhumetologist then Diagnosed me with CFS & Fibro. It was wonderful to talk to someone that understood! It"s awesome to finally have treatment. Of course, I don't talk to just anyone about it. Most people would think I'm nuts. I like to keep in my own little bubble. The friends I have are true friends. Actually, I been trying to pain the inside of our house. It's been difficult but I'm doing ok... My friend Cindy has been here every day since I started, this will be the 10th day! She has been a huge help with everything! Including helping me with my kids. We each have 4, lol so I've had a very busy house. But they are all good & usually go outside & play.
Anyhow, that's my story.
Most of my pain centers in the back, neck & shoulders then lots of headaches. As long as I don't push myself, don't over do it & don't stress, I manage. Muscle relaxers for sleep (always had insomnia) have helped with pain also.
Anyhow, everyone is different. We will all describe it differently. But it's all the same. I have a high pain tolerance yet pain is amplified.
Good Luck & keep us posted!
Don't give up, get a Rhumetologist! lol I sound like a commercial!