It's good to see you posting here. My primary diagnosis is CFS, so I will only answer the questions that I can and I'm sure the fibro members here will also chime in as well.
Yes, fibromyalgia suffers often have "fibro flares". Remissions of varying degrees can last anywhere from days to even years. Stress, other illnesses and changes in the weather are just a few things that can contribute to a flare-up.
To answer your question about balance & vision... we recently had a discussion about this and I will try to find the link later. Many fibro patients have some CFS symptoms and vice versa. According to Dr. David Bell, a Harvard graduate, approximately 30% of CFS patients experience clumsiness and another 75% of CFS patients experience light-headedness. Vision problems are also common in both CFS and fibro patients. Fibro patients often have trouble with fluorescent lights. Other vision problems common in fibro patients are blurred or double vision.
There is a research lab test apparently is diagnosing fibromyalgia. It is performed by a national lab --- Red Labs, USA and they have a website. The test requires spinal fluid. (I know... yikes!)
Also, many people with fibromyalgia and/or CFS have a low thyroid. Here's the information on that:
T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."
Kent Holtorf, M.D. --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320
I can only answer what I know from experience, but I hope this helps:
1: Yes, Fibro flares and then goes into remission (I have been in a flare for almost a year and a half), but does not leave any residual damage, nor is it progressive. It does change, though. I'll elaborate when I answer question 4
2: Don't know. Sorry.
3:I have vision and some slight balance problems. Sometimes my eyes don't focus evenly, especially if I'm reading a book and have to look up quickly. One eye (never the same one) will focus on distance, and the other will remain fuzzy and unfocused for up to a few minutes.
When I went to my neuro, he had me put my feet together and stand that way for a few seconds; no problem, but when he told me to close my eyes, I would have fallen if he hadn't caught me. There is a medical term for that, but I don't remember it. I also have short-term memory problems.
4: You could possibly present with a few of the symptoms, and then, as your body changes, your condition could possibly change also. I have symptoms now that I didn't have a year ago, and some of my other symptoms have gone away, at least for now.
I do know I have communicated with women with fibromyalgia who were getting progressively worse.
What amazes me about fibromyalgia and CFS is that we share many of the same symptoms as other autoimmune diseases. I could have sworn I had an autoimmune disease, but I don't. I have CFS, but I also have "autoimmune problems". For many us, at some point, we start to have a positive ANA titer. (my ANA titer is 1:640). I think Dr. Garth Nicholson does a good job explaining at how this occurs. If you would like the link... I can zip it your way via PM.
Anyhow, I thought I would also mention that 29% of fibro patients have a positive ANA titer and another 21.5% of fibro patients have a positive RA (rheumatoid factor) ! And yet many times they don't have rheumatoid arthritis... at least not yet.
One thing you may consider is that thyroid test, "tender point" testing and I would also recommend getting your vitamin D level checked because fibromyalgia and CFS patients are known to have a low vitamin D level as well.
I forgot to mention to you that many MS patients have a low uric acid level. So you may want to consider asking your physician to order the blood test for you. Perhaps that will give your physicians a clue ? I do know that many CFS patients also have a low uric acid level as well... so hopefully that won't confuse things. MS & CFS are somewhat alike... I actually think that research into CFS has helped find out more about these "autoimmune" conditions. I have read that mycoplasma fermentans is the species of bacteria that is seen and probably responsible for MS, CFS, Fibro, Gulf War Syndrome , Lupus, diabetes and other conditions. source: http://www.rain-tree.com/myco.htm
Hi! I was told after many types of tests that I am heathy, Except I have Fibromyalgia, Chronic fatique, sleeping disorder and Asthma. Now we have added detached retina to the healthy list. Just had surgery. Which the specialist said happens to people with fluid retension problems. Diabeties (I don't have) and Fibro being one that causes this. I Had a asthma attach 2 1/2 years ago. I was in the hospital for 2 wks. Came home with oxgen, nebulizer machine and hoards of medicine.Forgive my spelling thats another thing it seems to of effected. Coming off of steriods causes your body pain for 2-3 wks. My pain continued to get worse and worse until I was being sent everywhere I could be for tests. I have had asthma all my life. Otherwise heathy. I haven't met anyone that has Fibro like me. I keep getting worse. The Dr. said she doesn't know what to tell me or where else to send me. I have worked for the school board fo 23 years and now I have no choose but to file for disability. My doctor said Fibro doesn't get worse than when it appears and comes and goes. Fibromyalgia is an umberlla for anything they don't know and has to do with mussel and nerve pain. My x's new sister-in-law was diagnosed 12 years ago. Last year she woke up pain free and reclaimed her life. Who really knows? Diet does help, cause mentally your trying to do something. Sorry if this wasn't helpful!
Yes symptoms can get worse. I started out in Oct. 07 with a mild flare & as the months past it got worse & worse, to the point where I could hardly walk. The doc put me off of work & the flare has gotten milder. So yes it can progressively get worse. The doc figures mine got worse because:
1) I had to travel 1 1/2 hours to work & then another 1 1/2 hours home after a long 9 hours of working.
2) I had to sit all day & type or add loads of numbers with the calculator which made the pain in my back get chronic & also in my hands that I could hardly even hold a pen.
Neither one of those places hurt when my flare first started in Oct. 07 but my flare is still bad enough that I have to take morphine for the pain.
I have fibromyalgia and based on my own experience I can tell you this much.
A. Fibromyalgia does have periods of flares and remissions. Each flare may be different, perhaps with a different part of the body being affected or with a different level of pain. Some flares are short term while others may last a long time. There seems to always be a residual pain and soreness and an overall achiness even during times of remission that are often influenced by changes in weather or temperature.
B. I do not know how fibromyalgia affects you during pregnancy.
C. Vision changes are pretty much the norm for me with my fibro. On each of the last 2 eye exams my prescription has changed. Most noted was the inability to focus when reading and bluriness. Dizziness and balance problems occur from time to time. If I turn my head too fast it's like it takes a couple of seconds for everything to come back into focus. Bright lights leave me with an inability to see well for a short while. It's almost like a dark halo effect.
D. Progression has been continual but gradual. It started in my left hip and leg and now has progressed to include the myofascial symptoms as well as other areas. Even now the intensity of pain varies from day to day as does the location (s) of pain.
E. I am overweight and much of the weight gain is directly related to lessened physical ability because of the pain. While much of the pain is muscular and fibro related, the arthritis in my spine and kness have also contributed to the problem. And yes my weight has hurt me a lot. I am currently in the process of getting ready for bariatric surgery so as to get the weight off my joints and lessen the strain on my body. If at all possible stay active and eat healthy. Even if it's only walking leisurely for 15 to 20 minutes a day- move. I will update the site and let everyone know in a years time if things go alright with the surgery how much impact this has upon the muscular aspects of fibromyalgia.
F. There are many theories as to the actual cause of fibromyalgia. There has been a lot of talk about the neurotransmitters in the brain malfunctioning in such a way so as to amplify pain. Given that theory a person has to wonder if an injury or surgery can actually trigger that first painful flare. But then again anything that could affect the neurotransmitters in the brain such as low serotonin levels might trigger it. 3 years later and all my blood work is normal, so I can't really say that fibro accompanies any other form of illness or disease.
I presented with a flu like illness which didn't go away. It was EBV, Mono which it is commonly called. Epstein Barr Virus lasted in my system for years. So did Chronic Fatigue Syndrome. This went away when I presented with the Igg Igm antibodies when my Dr. did the repeated, every 3 mos. blood test for that illness.
I had a remission which lasted for two years, then I had surgery. I now have a relapse for three.
My symptoms circulated from head neck arms hips legs. Now they are mostly in my neck and head.
Stress puts me under. Too much sugar puts me under. Overdoing it physically puts me under.
So Holidays at my Mom's, eating a nepolian, or hiking my favorite mt. trail are things I no longer indulge in.
My vision changes greatly with the state of my neck and head. When I am in a myofacial flare-up, my eyes are blurry. Yes, my eyes don't follow each other when I have a bad headache.
Our Sensory input is compromise with FM. We have a neuromuscular illness which effects the nerves. When I am in a hightened neurological state, florescent lights, high pitch sounds, my husbands sneeze (the suddeness of it) loud hitting sounds near me etc. freak me out. I short curcuit. I hate it, I feel like a freak.
I cannot stand continual rubbing on the same spot when I'm highly sensitized. ?? Don't ask me, I have to guess its nerve endings. It makes me want to scream.
I don't, I remain composed but discontinue the intrusive whatever !!
Chiropractors can help with the vision by relieving the pressure on the nerves that go to the eye area,,,,,sometimes. Think before you start treatment. Twice I was bed ridden because an area flared up from a trigger point being, aggrevated/
Have you heard of Fibro Fog? Your not losing your mind.
i thought i was the only one driven crazy with the rubbing thing!!!!! I feel so much better now. I have to blink constently to try to focus. I had no idea it was fibro related! I was beginning to think my doctor was right. Everything I have complained about he was so terribly abusivly rude and said it was all in my head. Do any of you have numbness? My left hand has been numb for 4 months. The center of my right foot and an area above my right ankle have been numb awhile also. Today and the other day for awhile my left cheek and a small area of my throat went numb for a short time. I also started having a locust sound in my head about 4 months ago. I'll tell you, on top of the pain and severe tired feeling, sometimes it's more than I can take. Any help at all would be appreciated.
Have no fear, you are not alone. You have classic neurological symtoms of Fibromyalgia. Our illness is primarily neurological. It had been mistakenly publicised as an inflammatory muscle illness. There really is very little inflammation.
There is an amazing book that will comfort every FM sufferer. The Fibromyalgia Advocate written by Devin J Starlanyl, M.D. She has FM/CFS and has written this complete and comprehensive book for us to understand our illness.
There are sections for doctors, pharmacists, family members and the whole book is for us. Today I am taking the book with me to my Dr. I am suffering greatly with a combination of symtoms that have regrouped that we need to address. She is open to helping me and tweeking my meds accordingly.
You need a Dr. that will listen. Do yourself a bit of justice and release the Dr. you now go to. Contact your local hospital for support groups for Fibromyalgia and find Dr.s through those people. The hospital may have their own group. Pain management groups sometimes specialize in FM. Look up FM and see what you find. Beware of the witch doctors. There are those that wish to make a living off of our suffering. Do not go to anyone that is not recommended.
Hi. Thank you for your help. I will indeed continue to check further into fibro. Already am finding it to be the cause of many of my symptoms I was told were in my head. I did request a new new doctor, but he is, also pretty much the same. I am at the mercy of the veterans administration, as it is my only medical insurance. A couple of years ago they said that I tested positive for Lupus, but then said that a second test turned up negative. Upon questioning the doctor of this he said it was an ANA test. He is supposed to run some more tests next week. I don't know what will happen. He also tried to blame some of my complaints on "anxiety". (although aspects of my life are the best ever right now, except physical problems) It really angers me to not get treated better medically. His exam consisted of listening to my lungs. (and that was all!) When I began to tell him all symptoms he kept cutting me off. I explained that I thought that the BIG picture was best known in order to diagnose something. I guess the good ole days and the good doctors and just pretty much gone. I will definately check into the book and check into a local support group. I know I am out of luck in getting a good doctor though because of insurance. I can't get any other insurance because I already have the diagnosis, as well as some others and have too many things wrong to be able to get one I could afford or that would cover my conditions right now. Thanks again and the best of luck. Oh, and I am from Arkansas.
well, ive been under a phychiatrists care for awhile. as i said. in that department, i am better than ever. i have an incredible job and an incredible boss. happy home and my relationship is stable. my family is well and my surrounding life is great. the only problems i am having right now have to do with my physical symptoms. its just that, since the VA have access to the entire PICTURE on their computer screen, they can see my phsyciatric diagnosis on there, so they can just automatically say "its your mental illness that is the cause of your symptoms....ie/ its all in your head" bs....I know that the illness that i had is cureable. they, if you check out the military issues forum haven't done it only to me...i thought i was special...lol they stuck me with ptsd and claimed it was pre existing then stuck a personallity disorder with it...i didnt know what to think about it all, till i got to this place, now I understand...it is their way of getting out of their responsilbilties to servicemembers that served our country....anyway, they are using it to screw me out of treatment for anything now.
the tests that the new doctor ordered....another ANA and a sed rate for inflammation and stuff, well, he ordered em for 2 weeks ahead...dont go in still for just over a week. what he did do was put me on some new medication to start before i went for the testing. a steroid, a new musle relaxer with a anti inflam in it and an aditional anti inflam....while looking at info about the testing i saw plainer than day that those medications will affect the validity of the tests. the steroid will keep the ANA from being positive and the anti inflams will bring down the inflamation in my body, therefore changing the sed rate. he should've ran those tests that day before giving me those medications. why on earth would a doctor do something like that?
That's a common dilemma with having a CFS and / or fibromyalgia diagnosis. Many patients (at least in the past with CFS) have gone many years without a diagnosis. They are often shuffled around from specialist to specialist and leave without any answers. Sometimes they are accused of faking their illness and often hear comments, "well you look fine".... and those comments are discouraging. Without a lab test that can make the diagnosis... what can you do ? And without a physician who doesn't believe in CFS or even know about CFS.. what can you do ? So sometimes the stress will cause a CFS patient to see a counselor. CFS patients often don't have vacations at work because they have too many sick days. They often can't have children, because of hormone issues. And then if their illness progresses and these people need disability, insurance companies will often say that "there is no cause for CFS and it could be a mental condition".
There are physicians now, CFS experts, who have tests that are helping to prove disability. But if you file a claim for disability, you need to have these tests done before you file the claim.
Hope this helps. I have fibro 20 yrs. Drs say not progressive but my rhuemotoligst said mine is severe level (must be levels). I have not had a remission in 20 yrs. Days when pain is not as bad but bad enough every day that my physical abilities are limited and need meds or ointments. Some days barely able to walk without cane. Eyes are affected Blurring, trouble focusing and light hurts them. Sudden noises or movements make me worse. Weather also factor. Sleep problems, depression & anxiety & panic attacks. Stress level higher (think cause of constant pain). Severe skin sensitivity (just being touched can be painful. Also have RLS, PAD & severe OA which I am sure does not help. Sounds terrible but still here & trying to live as normal as possible. Stay positive as possible. They may come up with something to help us. God Bless.
I get confused about myself. I go along with classic fM (15 years) CFS has left me, but with the grace of God and my immune system battling the viruses that had me down and fatigued.
Now my symptoms are complicating my newly complicated life. New stress has brought on rampant neurological symptoms. Is it that or is it my meds that has given me breakthrough stress and neuro symptoms? Its one of those chicken before the egg things.
I'm not one to sit back and ride things out, but I also am not one for any quick alternatives that give you temporary relief. To me that soaks your pocketbook and you still have FM after a short while all the symptoms return. AKa massage, acupuncture, chiropractor.
The sudden noise....., even my hubby's sneeze frazzles me.. Flashing lights can freeze me in my tracks, like a petite mal seizure. I never before was so sensitive to the touch as I am now. Migraines from my face to my shoulder blades. On top of all this the stress has magnified my bi polar condition which has been at bay for years.
So, my insides are fluctuating emotionally, I'm trying not to let them ruin my outward presentation of myself and to make that harder, I am in total body pain from head to calves, my feet are fine, thank God. Lately my hands swell, thats new to me.
What I am doing, like you said is stay positive. How I do that is make a gratitude list, and plan somethings to look forward to for after the wedding which is Oct. 18th. The Bridal shower is 9/13. A part of me is sad I have to participate in these affairs with pain throughout my body. My daughters wedding day. A child I shared my 2/3rds of my healthy very active life with, I have to be at her wedding, virtually disabled. Forget dancing like I use to.
They all new me 25 years ago, the old relatives at the wedding, as a wild fun person, now I am a shell of that woman and three times the size I was. Its not what they think, I don't care believe me, they are a reminder of who I was. My daughter has put added pressure on me by denying my illnesses and expecting me to be a Barbi Mom. She even warned me not to cry at the wedding!
Boy am I on the pity pot. I'm gonna shut up now. Thanks for being here, everyone.
I think I am where I'm understood.
Well if it is true that it stays the same or get worse when you are pregnant, then I might not have it as I feel absolutely wonderful when pregnant, but a little while after I deliver (like a few months) it gets tons worse.
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