10 Less Common Fibromyalgia Symptoms

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edited February 2015 in Symptoms

Fibromyalgia article: 10 Less Common Fibromyalgia Symptoms10 Less Common Fibromyalgia Symptoms

There are so many effects fibro patients experience, some more common than others. Which of these less common fibromyalgia symptoms have you experienced?

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  • I would say the worst and most embarrassing symptom is the sweating. I suppose this is the worst because I can't hide when my head is dripping sweat and my hair is soaking wet. It's tough being with friends or family and everyone is fine or lightly sweating and I'm soaking wet. It's so tough trying to explain to everyone why I am sweating so much and that I'm ok. I suffer from many of the others, but I feel I can deal with them or try to hide them better.
  • I have had every one of the symptoms you listed. Luckily, I don't have them in their severe forms all at the same time. This disease is like being on a never ending roller coaster. I never know what is coming next. I only know I can't stand roller coasters.
  • @Cclaypool15
    I completely understand. When I was working as a nurse I would be taking care of a patient and breakout in drenching sweat. There is just no hiding it and it's so embarrassing. I had patients families complain about me. I did my best to do my job, but people didn't know why I was that way.
  • I have problems with bladder leakage at times when my bladder is full. It's just a small amount, but it is unstoppable. It's different than stress incontinence when you sneeze or cough with a full bladder.
  • Is shaking of the legs part of fibromyalgia when standing or walking?
  • I was diagnosed in October 2014 so I am so new at this, that some of the pain I have I always blamed it on arthritis. But now I know better. I have the same shaking legs when I try to stand to long when I am at the copy machine at work or cleaning, cooking dinner ect ect.
    What can be done to help us live this this part of fibromyalgia that we have to just live with???
  • I also have all the symptoms listed above. I always thought it was part of arthritis as my mom always say.
  • @ConnieRN
    @Cclaypool15
    I completely understand. When I was working as a nurse I would be taking care of a patient and breakout in drenching sweat. There is just no hiding it and it's so embarrassing. I had patients families complain about me. I did my best to do my job, but people didn't know why I was that way.
    I have the excess sweating it is extreme with me if I do any be sides sitting down doing nothing I sweat. I don't even fix hair or ware make up because I sweat so bad that it isn't worth it. I have been doing this for the past 6+ years and no one can figure out why "must just be the change" I am so tired of hearing that. Connie if I find out how to control it I will let you know.
  • @Cclaypool15

    You are so right the other symptoms you can hide but not the sweating. I moved my desk around at work and I looked like I had been swimming. When people looking at me it's ok the worst is when your co workers look at you with pity.
  • NatiNati Member
    Have all of them almost all the time and more symptoms, like incredibly painful muscle pain, lower back pain, neck and shoulders, pains in fingers (every joint) and toes where it connects to the foot, hips, wrists and it feels as if someone ripps the muscles off my bones. Simple movements like lifting my arm to reach for something causes me tremendous pain as if the muscles tears off.
    I have fallen several times because my legs suddenly gave in and I had no strength (and I use to walk a lot while I was working in nursing-/carehomes) Now I don't dare to walk without a cane and I walk as slow as maybe an 80 yr. old (some of them are faster than me!) Not to mention sweating, problems focussing, concentrating ..... after the 1. sentence someone speaks to me everything turns into bla blah blah.... no matter how hard I trie.....
  • sweett_jennsweett_jenn Member
    edited March 2015
    I think that a big symptom for me is motion sickness. I live in southern Ohio and taking a car ride can make me nauseous and I break out into a cold sweat. I used to be able to enjoy amusement park rides no longer another thing to add to the list of things that interfere with every day life. I no longer have to check the weather forecast as my body is my own barometer! I'm 33 and a mother (and wife) of three children. I am so sick of telling them no not today mommy doesn't feel well or mommy hurts really bad. I feel like they are growing up without me in their lives and frustration of medications when you already suffer from mental illness is worse because meds that "usually" work for FM sufferers don't work for me. Migraines should be added to the list because of the muscle spasms we all feel make our body tense up and then cause debilitating headaches or migraines. It is a never ending list I just hope someday doctors take it upon themselves to learn more about FM rather than calling it a trash can diagnosis! End of rant! Thanks for listening!
  • I have excessive hot sweats and cold flashes! I started taking Sage leaf and it has helped a bit. You take it twice a day, if I miss a dose I can tell. Motion sickness is a big one for me too, I keep a script of zofranwith me at ALL times to help with the nausea. TMJ, I have had 3 surgeries with no relief!
    I agree Migraines should be on there, I get the quite often.
  • Omg I have had all of these symptoms over the past 4 years! I still have the severe pms,sweating,and itching.
  • I suffer from every one of these. Can you all believe what we go through on a daily basis? And it all "started" with STRESS!
  • @lovecher I really thought that I was the only one experiencing this. Thanks for sharing!
  • I have had all these symptoms.I was diagnosed by a neurologist who said the bad news is that a lot of the symptoms are like MS but the good news is its not progressive likeMS.I am 69 and have had FM for 15 years for me stress causes alot of flares.
  • Yes to most of these symptoms...not PMS and not much trouble with menopause taking no med for it, but also have had a bout with Vertigo which lasted a month or so....finally Dr tried Meclizine and that worked but there is also a physical therapy treatment that works immediately, at least for a friend with FM and for my hubby who has Parkinsons one day at theray exercise we go to 2 days a week. I get to do my own thing. Need more. Also, my neck crackles when I turn it and I get a strange swishing sound in my head, usually in the morning. I thought it was from needing my meds but it happens after I've taken them too. No Dr has been able to explain it so maybe it's related to tinnitus which I have.
    Another symptom is itching on feet ankes and hands with no rash. I've used a Pres cream for years for it. I also have Diabetes, type 2 diagnosed in 2013 so I take what is prescribed for nueropathy, Neurontin, but don't think it does much. My hands and feet get cold, especially in the morning but then too my palms will get hot, numb and tingly. This is all so strange. I first was diagnosed with depression, 1985, tho had it since childhood....then FM a few years later, so have gone thru a variety of meds....taking 10-12 now. I am still getting Norco but have to jump thru the hoops monthly. Nothing else helps the pain so I worry about being cut off after 15 years. Good grief, I'll be 71 next mo! Why be so strict with me? Cymbalta helps over all. Ambien helps with sleep but Ins gives me only 1/2 of 10mg which is not enough so on some days I use Xanax. Once I get to sleep, maybe 3am, I sleep too long. With a whole Ambien I get to sleep faster and wake up earlier. I've complained but to no avail. We are retired so that's a blessing but it also was a blessing to be day care for grandkids for many years. Wish I could continue with 1 yr great grandson but can't. I've had pain that settles in a shoulder, or hip or knees. It started with hands so sensitive I had trouble getting into my purse. Just going grocery shopping can cause pain in back or feet or even a knee to give out. I don't really want to go anywhere but we seem to anyway, kid's sports, school program, church thing, etc etc. Wears me out and it's embarrasing when my mom was so active at my age. So wonderful to climb in to bed at night.
    Would really like to know if anyone has the swishing sensation in the head. Bye for now. Sorry if I've repeated what I've said on another subject here. I tend to rattle on.
  • 1. ConnieRN, I am concerned about your bladder. Obviously not FM sufferers have a bladder issue. Most do not. I have Diabetes 2, FM, many back and neck injuries, Costle Conditions (chest pain), and a lovely BLADDER problem that is the most debilitating disease of all/ Now as I said not all with FM has IC. However, nearly EVERYONE with IC., has FM. Now what is IC? Interstitial Cystitis is an excruciating Bladder disease with or without serious sexual dysfunction due to even worse excruciating pain. With or without stimulation from partner. It can destroy any intimate relationship. Even just getting excited by trying to please your mate, can double you up for hours. A drug was approved in 97, Elmirron. Expensive, useless to many. In 97 I saw 35 doctors in 31 days. IC took until 2001 for a formal, and extensive diagnosis. 3 of the Doctors I was bounced between were all correct. After my Hysterectomy, IC was diagnosed. I was taking Dilaudid 8-12 mg every 4-6 hours with 40-60 mgs of Norco for break through pain, 60-90 Soma with Xananx for sleep. Xans 2mg each 3-4 times a day. Plus Zoloft for depression. I was always stressed out if my meds would last til next appt. They always did. What if they stop working for me or Doctors stop prescribing them. STRESS over things that may never come to pass.15 years I took this medicine. It helped a bunch, even with fm. Then with help from friends, I started to take less meds. I realized I was still in pain! For the most part. I met with my GP. I asked him Am I a Drug ADDICT? I trust you Doc, flew 2000 miles to see you and ask you this. Doctor said NO, your not an Addict, You are a woman with serious pain issues who is in need of drug therapy. Why? I said I am still in a lot of pain. Help me reduce the meds. IT WORKED.. Within a months time I was completely FREE! I have had a few Norco scripts filled a total of 200 ,maybe. I only take 1 when I absolutely need 1. I know thuse reading think I am crazy, or a rotten person for even suggesting reducing your meds. I promise ALL of you, research the newest pain management studies. Talk to family, friends, clergy, and your Doctors. Please have your bladder checked out. God Bless and good luck.
  • Have all of these. Now my legs have given out 3times in last week and fall. Started carrying a cane. Take meds don't really work,depression has gotten real bad. Dr put me on cymbalta,helps so so. Hands legs and feet tingel all the time. Have type 2 diabetes as well.get shots in knees about every 3 months but there getting to where they wear off now in about 2 weeks. I'm so tired all the time. Fibro fog.wish I could feel better.

  • I am 65 and have lived for years with most of these symptoms, finally having to retire from teaching. Always blamed my pain on standing on cement floors for years. Have such a strong desire to just get out of the house and DO something, I applied to Medicare to try to get a motorized scooter. Something that will break apart and not require a bumper carrier or van. My doctor did all the paperwork, as required, but I was not approved. I am so depressed because of it! I creep around with a cane for balance and sometimes two. Just cannot even go to "Wally World" unless they have an electric cart available. Have breathing issues due to two previous PEs...the last was a saddle clot....usually only diagnosed during an autopsy! Most bothersome is RLS at night and insomnia. So hard to get up from low furniture! What really hurt, tho, was my inability to keep my twin 15 mo grandchildren. My daughter said I am not reliable since I have such medical issues!! When I get really tired, my chest hurts, as well as in between my shoulder blades. Can anyone help me get a scooter??? My house is my prison. I have a 2700 sq ft house, but stay in one bedroom area, near my bathroom. (Bladder issues) My husband is so frustrated with me, saying I have become a recluse! He is SO GOOD, tho. He does all the cooking and clothes washing. But he has Alzheimers. We get along using my brain and his body!! Thanks for letting me vent!
  • TalaTala Member
    I'm guessing on #5 you meant to say Spatial Disorientation (not "special"). A correction would be appreciated.
  • I was very interested to see poor balance & spatial disorientation. I have these problems but never thought about it being related to my fibromyalgia. I have fallen several times, usually tripping over slight raised areas in a sidewalk, or not lifting my foot high enough to climb a stair. The last time I damaged my rotator cuff and had to have surgery. When I asked my various drs. about why I seem to be so prone to falling, they never seemed as concerned as I was. My question now is, what can I do about it?
    I also have trouble with the cold of my hands, diagnosed as Raynaud's Syndrome by me drs. Wearing fingerless gloves has helped.
  • AuntyAunty Member
    Wow....this explains a lot! I have experienced every one of these symptoms, I thought they were due to the many medications I'm taking as I also have Ulcerative Colitis along with the Fibromyalgia. Very informative...
  • Hi I suffer from this fibromyalgia. ..bout to lose my job...cant believe people are so not willing to try to understand. I have all theses 10 less common symptoms. .
  • I have suffered with Fibromyalgia for most of my life. I am 64yrs old. I can remember back when I would have panic attacks and insomnia at as early as 12 yrs old. I had gotten hit in the head with a roller skate when I was 11 yrs old, suffered a concussion and things went downhill with my health after that. I have all of these symptoms. Not so much the PMS problems, that is because I had a hysterectomy in my twenties, but before that I use to have the most painful periods and PMS. As I read all of the comments on here, I started to cry. Reading about all the pain and suffering everyone of you are going through, just breaks my heart. It also makes me finally realize, that there is people out there that are in as much pain as I am. My Fibro has gotten worse over the past 10yrs. My fibro fog is really bad. I have to agree, that stress is the real root of this evil disorder. Stress is the big trigger that causes all this horrible symptoms to flare up big time! I do not do much of anything anymore because it is so stressful and painful to get ready to do something and then I am so darn tired just from getting ready to go somewhere. Housework, is the last thing, I ever want to do. That just started happening about 5yrs ago. Just looking at all the things that need to get done, is so depressing. I hate this horrific disorder. I hate it for all of you other sufferers. I am on 5 different prescription, but nothing for pain. And that is what I suffer with the most! GOD BLESS ALL OF YOU
  • I have suffered from Fibro for over 10 years. It's been horrifying and a terrible strain on my family and marriage. Along with regular known symptoms, I too, have the lesser known symptoms. I feel so sad for all of you who suffer like me. I wish I could take your pain and depression and anxiety. I know how it feels and wish that no one else had to suffer.
    The ones who have the legs giving out on them and the shaking and no strength in the legs.... I have started getting shots in my hips and in my tailbone. Major pain in the tailbone. Can't sit down straight without excruciating pain. The shots help with the leg pain, tailbone pain, shaking and my hips giving out on me.
    I finally got my nerves burned in my neck and shoulder to help with neck and shoulder pain which also contributed to my migraines. Which are almost everyday btw.
    Look into the shots. I am a huge non believer when it comes to needles and shots. But these seem to help. I do have to say that the shots in my head for the migraines was one of the WORST experiences in my life. So painful that I cried through the whole ordeal. NEVER doing that again. They knock me out for the hip shots. The sensitivity of touch is overwhelming at most times. It's bad when you can't even get a hug or back rub from someone trying to give you comfort. Keep pushing on, yall. Maybe someday we will be free.
  • @GrandSue63 shots in my hips have helped with falling and my hips giving out a lot. They knock me out, thank goodness, and I've had several sets of shots now. My pain care dr is the one who gives them to me. Try asking yours about them.
  • I have burning in my legs, feet, arms and hands. It feels like they are on fire. Does anyone else have this symptom?
  • The only thing I don't have is PMS. (I am Post Menopause).
  • I have experienced 9 of these symptoms and had no idea that they too could be Fibro related, it will change how I look at and deal with these symptoms. The pain is often so intense that only hydro-codone will help.
  • @Aunty
    I also have colitis and between flare-ups for that and fibro it's hard to ever be able to go anywhere. I feel more and more isolated. Gentle hugs to you.
  • @NanaBeth
    Bless your heart. I'll pray for your chair and send you gentle hugs.
  • ProseProse Member
    You dont mean "special" you mean SPATIAL disorientation...
  • I have been suffering from severe arthritis in my knees for several years and also degenerative disc disease in my spine. The dds has progressed over the past 12 or so years and I have been told that I have spinal stenosis that puts pressure on my nerves. Then came the dx of fibromyalgia. Wow! The numbness and tingling in my arms, hands, legs and feet is horrible. I swell in my legs and feet so bad all the time with no real relief even with lasix. I have all of these symptoms as well. I thought my blurry vision was just getting older, but it could be the fibro causing it. And the old brain fog is crazy. Most days I can't get my thoughts to come together at all. I also attributed the chest pain to low potassium levels, but I guess it could be the fibro causing some of that too. Never do I feel like doing anything. I have to force myself to cook dinner or do dishes. And that usually takes longer than usual because I get so worn out. The worst of it is that I am only 41 years old and am having to try to get on disability because I am no longer able to work. My life certainly has changed.
  • 10 out of 10 for me! I had no idea some of these things were related.
  • @WandaCF
    Hi there, I have only just been diagnosed with Fibromyalgia a month ago, after months of wondering what the weird and painful symptoms that I had. I had pain in my back and hips, a dead leg , numbness in my legs and one foot. I also had abdominal swelling. I was told to do strenuous excerise, which at the minute is walking the dog, however I am now getting really painful cramp on the top of my right foot, usually when I am lying down, I am new to all of this, and don't know what is Fibromyalgia and what isn't, and like you I'm 41 ( well very nearly 42).
  • I have had fibro for well over 12 years....long road. I have subscribed to this website because I finally have people that are living my life. Wow how this disease can change your whole life. I am a type A personality who ran a successful physicians practice and I lost my favorite job and did not understand what was going on. It started with severe depression and anxiety disorder, inability to sleep. I could not relax...my brain just would not shut off. All the symptoms in this article I have been treated for. For the person who mentioned loosing their job, at least in PA fibro is recognized as an illness that qualifies for disability. You have to file first yourself...they will reject you because it is part of the game. So I found a great lawyer to fight for me. They only get paid if they win. They did all the work getting the medical records my work history...I even tried some part time jobs without success. We had a hearing and I won my case. They went back to the date of my last employment and I got back payment. Also if you have children under the age of 18 and you have worked most of their life, they also receive money because of my loss to bring in the income we once lived on. I have been on Cymbalta which helped with the depression, Lyrica and Savella which I had severe drug reactions. I have seen so many specialists for each diagnosis...IBS a Gastro. Numbness and tingling, a neurologist, my thyroid was very low as was my Vitamin B and Vitamin D levels. I could go on and on with other issues that contribute to my fibro, but I have found that when I am in warm weather like Florida or NC I am much better. This winter has been horrible the cold coupled with the snow puts me down and out and then I get that chronic fatigue syndrome when all I can do is sleep. It is a strange disease that many of your friends and family can not understand or feel that you exaggerate to get out of commitments. I have reall found out who my true friends are. I find on days that I am at a lower pain level massage therapy really helps when you find a good therapist who understands your pressure points. I had spent 7 years sleeping on the couch because my bed was too hard and there were nights I could not sleep or had restless leg syndrome. My Dr said I could get a hospital bed with the mattress winth inflatable mattress, I'm in my fifties, I don't want a hospital bed so he wrote a script for a sleep number bed that my husband can adjust and I can adjust...I got the best of the best with a vibrating mattress, what a lifesaver. My account gave me a list of all the medical deductions I could claim because the bed was so expensive, so that may prove helpful. Well it was nice to vent. I an committed to these articles and comments...you are my support group
  • @dmyers
    Yes, especially if I am on the phone, write for a long period of time, or walk too long. I don't have the burning...have u been tested fo Diabetes because my husband has the tingling and burning related to his sugar
  • @claudiagaye
    I am sure they have tried you on the regular meds..Cymbalta, Lyrica, or Savella. If you haven't you may want to try them. Unfortunately, I had more reactions than relief. I have been on Vicoprofen for 10 years. Vicodin part helps the pain and the Ibuprofen for the inflammation. It's the combo that helps, straight Vicoden did very little. I know it is not good to be on a narcotic for this long, but I have never abused them and when the weather is better I reduce them and even can go off of them. So it might be an option
  • dear peach 651 you gave me a lot of good info. I was diagnosed a couple of months ago and have been trying to deal with how everything I have ties together. I have just been put on gabapatin which is supposed to help no real success yet but I am told you have to be on it for awhile. I also have success treating my pain with vicoden and people including family members think I am a drug addict, that is what hurts me the most not having support because no one has the time to look up or read about this disease so they have no idea. Most times when I get really tired I am called lazy. I refuse to acknowledge these comments as they are poison to my depression. It gets so bad I get ecezema on my hands from stress and it is so painful my hands breakout in what looks like clusters of pimples then they dry up and my skin splits and sometimes it causes me to bleed.
  • @p1gl3t me too and I am 48.
  • Diagnosed 15 yrs ago. I have all of these. Had no idea the sweating was one of the issues. I love validation that we aren't insane. For those of you who are being called lazy and crazy.... Ignore it. Take care of yourself. No one else seems like they will. Blessed Be.
  • Feeling blessed to read some of this information before I was diagnosed with fibromyalgia 11 years ago spae
    doctors looked at me like I was a hypochondriac .I also have tried lyrica gabapentin neurontin with no success I have restless leg syndrome and rheumatoid arthritis on top of the fiber meralgia very painful and hard to live a normal life I wish they would invent a medicine that would help us a lot more
  • @sunny52 ......
    Please don't let family members or friends or anybody make you feel like you're a drug addict you need your medicine as long as you're not abusing your medicine keeping your pain under control is better for your health severe pain can cause stress on your heart and blood pressure and a lot more ailments that you don't need to add to what you already have .but I agree with peaches take an anti inflamatory with your vicoden or get vicaprofen
  • I have all these symptoms except for the pms... some I didn't even know where from the fibromyalgia. .. wow.. I am glad I read this.. thank you..
  • It took 11 years of dr.s appointments and them looking at me like I was crazy before I got a diagnosis. . I've been on med for 8 years now... still in pain a lot but I don't want to be on so much medicine.
  • @Cclaypool15 I only had the sweating when taking Cymbalta, which I stopped. However, many times I'm overly warm and chilled for no apparent reason.
  • EVERY SINGLE ONE EXCEPT PMS!! Sadly. No med has ever helped for very long, and side effects are awful. I feel so very hopeless.
  • deb53deb53 Member
    I have experienced most if not all of the symptoms that are common to fibromyalgia. I have struggled with this since 1992 after a traumatic spine injury. My pain is much more controlled than ever because of a very good doctor who has gone out of her way to solve it. My question is: do any of you suffer with sores on your face and body that start as lumps under the skin on the nerve line? These are not shingles but act almost like it and the sores can stay for months and are hard to get rid of because as soon as they seem to be going a new one will start. I have also developed an autoimmune disorder now. Anyone else?
  • deb53deb53 Member
    @dmyers ..... The burning is very common with this.

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