Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi. I am new here but wanted to find a good support group. seems like a lot of people don't understand fibromyalgia and tend to be extremely dismissive...
Ok so here goes. I was diagnosed with fibro ~8mon ago. I had previous MRI done to test for MS as I had some severe falls due to muscular spasms among other symptoms such as leakage. The neurologist kinda shrugged me off as most doctors do though once they know I have PTSD and Autism... I had a service dog whom helped me with these disorders. Anyway.. The MRI didn't show anything. I also had blood tests done for arthritis which were negative.
About 2 months after the fibro dx I had chest pains that where diagnosed as costocontrisis.
About 3 months after the dx I was diagnosed with anemia but never followed up on the cause of it.
2 months after that I was having apnea episodes in the day caused from my tramadol and had to stop using it. Had a sleep study with 47 episodes of obstructive apnea per hour. With one episode of central apnea. My CPAP still records occasional central episodes and more often obstructive but I wasn't diagnosed with mixed apnea prob cuz the amount of central episodes is not enough for a diagnosis?
I do not have very evident "flares". I have a myriad of symptoms that come and go and a "flare" for me is severe forms of those symptoms for periods of time. But the symptoms are almost always present and go up and down in intensity thought the day. I have continued to decline and am not sure I JUST have fibromyalgia.
I had my blood sugars tested- normal
had cholesterol, D and B vitamins tested- normal
And after iron supplements my iron is back to normal.
Also a few years ago I developed raynauds syndrome. way prior to symptoms getting this worse. I have had all these symptoms for a very long time but only recently are they to a point that I needed a diagnosis and that they are consistent.
For instance I would go into the ER many times when I used to be on Psych meds for various physical pains that would "magically disappear" and then be labeled as attention seeking.. this led to me never seeking medical attention when I needed it.. I would have episodes of severe eye problems and couldn't navigate home and would go into the ER and they wouldn't find anything wrong. Severe abdominal pains that they would then check for cysts because of the PCOS diagnosis but would never find anything. Pain that would move around once I got to the ER, etc. So now I have that diagnosis but tbh I am not sure if it's accurate.. Even if it's true. Why has all my symptoms seriously worsened to this point when only a few years ago I only had "episodes" of these same symptoms..
Ok now for my symptom list:
Changing depth perception thru day
Extreme dizziness
balance problems
joint crack
joint stiffness
joint pain
joint inflammation
insomnia
drowsiness
fatigue
weight gain
anxiety / panic attacks
light sensitivity
chemical sensitivity
memory problems
breathing problems
occasional leakage problems
muscle spasms
headaches / migraines
stabbing pains in back
spiders crawling on my face or legs
nightmares- some helped with CPAP
occasional hallucinations
dry eye / itching / burning / grainy
general aches in most my body
constantly thirsty but nothing quenches it
changes in personality thru the day
abdominal pain and sensitivity
sensitive to touch
jumpy
paranoia
overall sick feeling
cold intolerance- tenses up body and aches painful
heat intolerance- aches and pains worsen just the same as the cold
Have had a few falls due to muscular spasms
Am recently experiencing a lot of motion sickness
chest pains due to costocontrisis
raynauds phenomenon in the cold
hand and finger cramping
carpel tunnel
sensory overload
occasional thumping in right ear
itchy ears
dry throat
muscle tension- pre charlie horse
constipation
astigmatism in both eyes
in "flares" have to go every 5min to bathroom even if haven't drank a lot of water..
Hyper-vigilance
Dissociative episodes
panic attacks
Emotional Episodes or Outbursts
I'm thinking I should check for epilepsy.. but Im not sure if it's worth it.. It's like i told my doctor.. If I told him all my symptoms it would kinda be pointless.
What I'm currently using:
White Tea / L-Thianine: Anxiety and pain
Magnesium / Epsom salt Bath: Muscle cramps and constipation
Cpap Machine: Sleep Apnea / nightmares
I also used to have a Service dog who did panic attack and sensory overload prevention and response, mobility support, and as needed guide work. But recently had to retire due to knee problems. Causing me difficulty attending groups and getting out as much as I used to.. Working on my therapist on obtaining another dog to help with my disabilities.
Ok so here goes. I was diagnosed with fibro ~8mon ago. I had previous MRI done to test for MS as I had some severe falls due to muscular spasms among other symptoms such as leakage. The neurologist kinda shrugged me off as most doctors do though once they know I have PTSD and Autism... I had a service dog whom helped me with these disorders. Anyway.. The MRI didn't show anything. I also had blood tests done for arthritis which were negative.
About 2 months after the fibro dx I had chest pains that where diagnosed as costocontrisis.
About 3 months after the dx I was diagnosed with anemia but never followed up on the cause of it.
2 months after that I was having apnea episodes in the day caused from my tramadol and had to stop using it. Had a sleep study with 47 episodes of obstructive apnea per hour. With one episode of central apnea. My CPAP still records occasional central episodes and more often obstructive but I wasn't diagnosed with mixed apnea prob cuz the amount of central episodes is not enough for a diagnosis?
I do not have very evident "flares". I have a myriad of symptoms that come and go and a "flare" for me is severe forms of those symptoms for periods of time. But the symptoms are almost always present and go up and down in intensity thought the day. I have continued to decline and am not sure I JUST have fibromyalgia.
I had my blood sugars tested- normal
had cholesterol, D and B vitamins tested- normal
And after iron supplements my iron is back to normal.
Also a few years ago I developed raynauds syndrome. way prior to symptoms getting this worse. I have had all these symptoms for a very long time but only recently are they to a point that I needed a diagnosis and that they are consistent.
For instance I would go into the ER many times when I used to be on Psych meds for various physical pains that would "magically disappear" and then be labeled as attention seeking.. this led to me never seeking medical attention when I needed it.. I would have episodes of severe eye problems and couldn't navigate home and would go into the ER and they wouldn't find anything wrong. Severe abdominal pains that they would then check for cysts because of the PCOS diagnosis but would never find anything. Pain that would move around once I got to the ER, etc. So now I have that diagnosis but tbh I am not sure if it's accurate.. Even if it's true. Why has all my symptoms seriously worsened to this point when only a few years ago I only had "episodes" of these same symptoms..
Ok now for my symptom list:
Changing depth perception thru day
Extreme dizziness
balance problems
joint crack
joint stiffness
joint pain
joint inflammation
insomnia
drowsiness
fatigue
weight gain
anxiety / panic attacks
light sensitivity
chemical sensitivity
memory problems
breathing problems
occasional leakage problems
muscle spasms
headaches / migraines
stabbing pains in back
spiders crawling on my face or legs
nightmares- some helped with CPAP
occasional hallucinations
dry eye / itching / burning / grainy
general aches in most my body
constantly thirsty but nothing quenches it
changes in personality thru the day
abdominal pain and sensitivity
sensitive to touch
jumpy
paranoia
overall sick feeling
cold intolerance- tenses up body and aches painful
heat intolerance- aches and pains worsen just the same as the cold
Have had a few falls due to muscular spasms
Am recently experiencing a lot of motion sickness
chest pains due to costocontrisis
raynauds phenomenon in the cold
hand and finger cramping
carpel tunnel
sensory overload
occasional thumping in right ear
itchy ears
dry throat
muscle tension- pre charlie horse
constipation
astigmatism in both eyes
in "flares" have to go every 5min to bathroom even if haven't drank a lot of water..
Hyper-vigilance
Dissociative episodes
panic attacks
Emotional Episodes or Outbursts
I'm thinking I should check for epilepsy.. but Im not sure if it's worth it.. It's like i told my doctor.. If I told him all my symptoms it would kinda be pointless.
What I'm currently using:
White Tea / L-Thianine: Anxiety and pain
Magnesium / Epsom salt Bath: Muscle cramps and constipation
Cpap Machine: Sleep Apnea / nightmares
I also used to have a Service dog who did panic attack and sensory overload prevention and response, mobility support, and as needed guide work. But recently had to retire due to knee problems. Causing me difficulty attending groups and getting out as much as I used to.. Working on my therapist on obtaining another dog to help with my disabilities.
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I'm alive, I'm sleeping like a rock, and for some reason I wanted cherry juice so that seems to be helping. (??? Weirdo that I am.)***Infamous therapies over history:1. The Attic. The madwoman in the attic is a motif in literature going waaaaaay back: the nutty female relative is locked in the attic. (See: Jane Eyre by Charlotte Bronte for a grotesquely racist version of it, and Charlotte Perkins...
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
I hope you have a great weekend and can find more answers.
Hugs!
Many of your symptoms are consistent of a diagnosis of Fibromyalgia. Raynauds, PCOS, chemical sensitivity, headaches/migraines, sensation of things crawling on your skin (formication or paresthesias), heat/cold intolerance, constipation (IBS), carpal tunnel, sensory overload, irritable bladder, sensitive to touch (Allydonia), panic/emotional outbursts can all be associated with Fibromyalgia (FMS).
What concerns me is your added description of joint pain, dry eyes and being contantly thirsty along with a dry throat. You've had your sugar tested and it came back normal. I'm not a doctor but it is possible that you may have FMS and another illness called Sojgrens Syndrome or just Sojgrens. Sometimes they go hand in hand. In order to figure this out, you need to see a rheumatologist that has an interest in Sjogrens. Call your local hospital and ask for the physician referral department. See if they can match you up with someone.
You have to be your own best advocate when managing a complex illness. That means telling your/any doctor any and all of your symptoms. They can't help you, if you don't provide adequate information.
I assume that due to chemical sensitivies, you can not take any of the three primary medication prescribed for FMS: Cymbalta, Savella or Lyrica. Have you tried Melatonin or an OTC sleep aid such as Calms Forte? Even with the CPAP, you need something to help you sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain.
In addition to seeing a rheumy who is knowledgeable about Sjogrens, you should consider seeing a functional medicine specialist. The latter is a doctor who is an MD with a strong interest in holistic medicine. I have chemical sensitivities too. I got some great help from my functional medicine specialist. I use a mix of conventional and holistic medicine to manage my symptoms. Most functional medicine specialists take insurance. Use Google to find one in your metro area.
I'm really sorry that your service dog had to be retired and that you are waiting for a new one. An animal companion can be such a comfort when you don't feel good.
I hope that my comments are helpful to you. You are not alone. Take care.
A lot of disorders have symptoms like FM. (Consider: A headache can be tension or a brain tumor or a pinched cranial nerve. Epilepsy can cause dizziness, but so can low blood sugar. It's kinda hard to know what's causing what and when, unfortunately.) So if you feel there's more going on than FM or that it isn't FM alone? KEEP BUGGING THOSE DOCTORS! Rule out *everything*, anything, and then some, and get rechecked regularly. Some things develop only more obiovus symptom clusters over time---lupus is a good example, actually, depending what type of lupus it is, I'm told---and same goes for a gazillion other diseases. (You'll notice a lot of people here have had or been checked for thyroid disease, for example, but only after a certain period of time passed and repeated tests.)
So do not give up hope. Take that list to doctors. Ask them to separate for you what is Neurological, GYN, GI, and so forth. Sometimes that helps them figure out where a root problem is.
Browse around, ask questions, rant, vent, etc., and be prepared to be *more* organized than any doctor you ever met. I journal symptoms, meds, what works for what, what is a trigger, sleep, all sorts of things, so I can see patterns for myself before I see the docs.
And do *not* be offended, please, but I suffer PTSD. A lot of those symptoms of dissociation, anxiety, etc., can be part of an anxiety disorder---so if you see a psychiatrist (or two) for screening? That can help, too. For one thing, you can get help if needed. For another, my psychiatrist is also neuro-certified, so he can spot things that are ore likely to be neuro and not psych.
While many people debate where FM falls---autoimmune, neuromuscular, etc.--- the point is to get symptom relief. Some of us worsen, some of us don't. It's my personal believe there's "subtypes" of FM---and medical science hasn't caught up to it all yet.
OK, sorry for th enovel, but I had an excellent rheumy when I was diagnosed 20 years ago---and he ran every test My GP still runs annual to biannual bloodwork to be sure no autoimmune issues are lurking. Been through it, learned the hard way, as many of us have.
Gentle purrs of healing to you,
Leo
BTW, I've been here for about 5 years on FM on Daily Strength. They've helped me not just with FM, but life trauma and drama, and even my PTSD, other chornic pain, it's a fantastic group here:-)
And that is me on Fibro Fog. LOL, so sorry!
As I said, I'm a newbie, but I've already fallen in love with this forum. The people here are so caring and supportive. I hope you find support and encouragement, and I hope you find moments of peace and joy this weekend.