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Living With Fibromyalgia - Online Support Group

Southern Stars

I think I have Fibromyalgia. My current primary care physician is really concerned about my depression. My therapist and I have been working on Cognitive Behavioral Therapy and addressing my MDD, GAD, and PTSD. It’s going well I think. I need a new PCP and I’m going to meet my current one tomorrow (I think we’re basically just going to “let her go”). I’ve been dealing with bad memory, depression, anxiety, off and on insomnia and chronic back pain since 2009/2010 and I believe I am (still) developing Fibromyalgia. I met another PCP (while mine was out of the office for two weeks) and after assessing my complaints (and insistence for an MRI) he suggested I might have Fibromyalgia. I’ve been trying to stay in denial and find something else that’s curable and that I can fix another way, but I think I’m ready to accept it for what it is.

I’ve been trying to type up this intro for almost a week now but I keep getting scared because it’s another step closer to accepting.

I (think I still) have an appointment with a new physical therapist (who is familiar with Fibromyalgia) on April 9th (which seems likes months away at this point). The Physiatrist I saw (who also thinks Fibromyalgia seems appropriate) suggested aqua-therapy so I think I’ll be starting that after the April 9th appointment (if my insurance company decides it’s okay - because I’ve been arguing with them about my current situation). I was doing physical therapy with the TENS machine twice a week but apparently I’m fine and don’t need it anymore according to my insurance company (so I’m sure the disability I’m on won’t get re-approved either) because my PCP told them I’m fine and that I’m good to go back to work because apparently I can walk and stand without any issues (sure wish my body new these things).

It’s getting harder having to fight with everyone I know about how much pain I’m in. It’s not a contest, I just want help, but everyone thinks I’m just lazy and maybe I have diabetes or a pinched nerve, or a cracked disc. I’m still fighting, but I’m slipping with each step.

It started in late December when my knee was swollen one night after work and the next morning it got worse and worse. On Jan 8, my pcp said I had Pes Anserine Bursitis in my knee and I started physical therapy for my back pain. I went back Jan 22, when my knee got even worse and the pain started in the other knee as well. We did blood work and got x-rays (frontal and lateral views of the lumbar spine and frontal and lateral views of the thoracic spine) and she told me I was fine and didn’t have any slipped, ruptured, cracked, or herniated discs (although now that I have my medical records in front of me, I see that there is “mild to moderate narrowing of intervertebral disc spaces most pronounced at the mid aspect of the thoracic spine, with associated mild marginal osteophyte formation” which I guess means nothing important). I continued physical therapy and when it didn’t get better, I went looking for an MRI. My doctor was out of town, so I met with another pcp on Feb 11. Muscle spasms started developing at this point. On Feb 20, I met with my doctor again and told her I had stopped taking the DULoxetine she made me take (I have a history with SSRI’s and SSNRI’s and neither work for me, they only exacerbate my depression and anxiety as well as irritability); she told me it was for my back but her notes in my medical record say she gave it me to hoping it would help with my anxiety. She then gave me a prescription for cyclobenzaprine (Flexeril) as a muscle relaxant to help with my muscle tension and spasms. It doesn’t help. Just makes me really drowsy.

As of today (March 22), I experience fatigue, muscle fatigue, muscle weakness, muscle spasms, the right side of my spine goes between being on fire, having needles stuck in it, and a deep aching or burning sensation, and sometimes it just feels like there’s a cord attached to my lower back that’s being pulled up my spine. My arms and (mostly my ring) fingers twitch and shake (almost like vibrating) most of the time, especially when I experience fatigue of any kind. My back get spasms, burning, deep aches, and needles depending on the day and how much I’ve done and the position I’m in. My knees still hurt too, with burning, stabbing, needles, cold spots, tingling, and shooting pain from my knees up my thighs. My toes curl and twitch when I lay down or relax. I experience more temple headaches and different headache pains now. My depression is getting worse (which can get scary), but that’s reasonable and manageable with the help of my therapist and I’ve been dealing with it since 2009 so it’s familiar. I bruise easily (and it gets worse as I age) but some days I can’t scratch an itch because it hurts too much, some days I have to say “ow” when my husband touches me because I can’t take the pain. It doesn’t feel like my skin though, it’s more like a bruise. My circulation was horrible a few months ago when it all started, my feet and hands were always cold, but lately it’s been better. My shoulder blades twitch. My hands have been doing new thing where it kind of feels like arthritis but it’s not on a specific joint, it’s my entire hand, or my entire thumb or finger. My back feels like it can’t take the pressure of holding me up anymore most of the time. Like I’ve been lifting and working out and like it’s been overworked when all I’ve done is try to hold my head up. I’ve lived with bad memory, and a bad attention span, and apparently maybe disassociating since I was a teen, but now I’ve been getting lapses in my attention span. I’ve found myself in the bathroom, wondering why I was in there and when I managed to get there. I’ve had a few conversations (usually emotional) where I will blink and forget where I am, I usually then ask what I was just saying and then continue the conversation where I left off. It makes me feel like I should stop driving, but it’s really just confusion, so worst case scenario I end up having to find somewhere to turn around because I forgot where I was going. And as of last week, I now get what I call needles in my hands and I’ve had it a few times in one of my legs, one of my feet, and I think one of my thighs; it’s almost like the pins and needles from a foot that fell asleep, but it’s just the needle pricks and they go deeper than that sensation. I feel like my body is constantly vibrating; it also feels like I’m shaking all the time but they’re tiny shakes, like right before a shiver - it’s hard to describe because it’s an entirely new sensation for me. I have also been dealing with constipation since December (which is the weirdest part for me because none of my medical people seem to care and it seems to be the one thing that doesn’t add up for Fibromyalgia because most of the time it’s IBS which I believe is not constipation - I could be wrong). And as of this week, my ears have begun to burn; very sensitive to the touch and they feel hot.

I am currently not taking any medication and I don’t even think I’ve been officially diagnosed with Fibromyalgia (even though the physiatrist seemed to give me it as a diagnosis) because it doesn’t say anything about it being a diagnosis in my medical records.

I Think I have the Fibro stuff from told I do in 1999 and I never fully believed any of it. The thyroid is so connected to this Syndrome and SO MANY doctors miss helping support those to need support. It took 10 yrs for my good ole D.O. to finally give me desiccated support and the 10 yrs of depression was gone…

On the emotional stuff, look into EFT work aka Tapping…Brad Yates has a couple videos on how to do it, and some others do too. I do it every day and have been for years.