Fibromyalgia

[Phoenix]

Has anyone else been diagnosed with this?

I joined an online support group for it... but feel like the connection with psych issues and CPTSD is so strong that I still feel alone on the site. I feel like a lot of support the other fibro people offer totally make sense but I don't know how to do them because I have such a disconnect with my body and such a hard time taking care of myself.

Just wondering if anyone else had both issues... would love to talk.

Thanks.

[Dutch Uncle]

Yep, here's the thread: Neuro-immune Disorder - Fibromyalgia?.

Wishing you well. 

[Kizzie]

HI Phoenix - My GP thought I might have FM at one point but I did not have all the symptoms so the jury is out unless and until I do get more symptoms.  It was an awful feeling though - "On top of everything else I might have FM!?!?"   

I know what you mean about wanting to talk here with others who have both CPTSD and FM - taking care isn't something we here know how to do well and it's just so much easier to explain to someone who knows that. 

It might take  awhile to get some responses but starting this thread and adding a post of your own every once in a while might help others with FM to notice it. 

[Phoenix]

Thank you so much for your understanding.

Did they say you didn't have enough tender points or something? I've been reading a lot of books on Fibro and some of them argue that the tender point exam isn't always fair bc part of the issue is that pain is unpredictable and migrates within the body so possibly someone with it but maybe not as severe might not register enough tender points but still have it. What did they say was causing your symptoms then?

I'm glad you didn't have FM - though it must be equally frustrating to have so many of its symptoms but once again end up with no answers. When I did get the diagnosis, part of me felt relieved that my pain was being validated with a name...

That being said, the name seems to be a blessing and a curse bc now the name seems to be a catch all to dismiss providing help. It's deemed as incurable and so.. yup.. you have FM... so you'll just have to make life adjustments to manage the pain as best you can and here are some meds but they don't actually help...

my neurologist has been trying to help me with the migraines and FM but now even she is saying maybe it's just stress... (which I'm not denying - I get that my psychology wreaks havoc on my body... but please still help me! I see a psychiatrist, I go to counseling, I take psych meds, I've essentially stopped working... I'm doing everything I know how to do to manage my stress... so telling me it's stress doesn't tell me what to do about that  )

Oh well, I'm seeing my rheumatologist on Tuesday and hopefully she'll be able to offer something more? If not I just don't even know... I'm in so much constant pain and so fatigued... how can this be the rest of my life? 

Anyway - I'll take your advice and try and revive the thread every once and awhile to see if anyone new joins that might have this... or possibly has it undiagnosed?

Thanks again!

[Kizzie]

Did they say you didn't have enough tender points or something? I've been reading a lot of books on Fibro and some of them argue that the tender point exam isn't always fair bc part of the issue is that pain is unpredictable and migrates within the body so possibly someone with it but maybe not as severe might not register enough tender points but still have it. What did they say was causing your symptoms then?

That was part of it, not enough of the tender points, but also I didn't have headaches upon waking, and no nausea.  I do have osteoarthritis and think I am a "Highly Sensitive Person" so the two together may be enough to look somewhat like FM.  In any case she didn't totally discount it but wouldn't confirm it so I am a bit in limbo land dealing with the aches and pains and fatigue

I'm glad you didn't have FM - though it must be equally frustrating to have so many of its symptoms but once again end up with no answers. When I did get the diagnosis, part of me felt relieved that my pain was being validated with a name... That being said, the name seems to be a blessing and a curse bc now the name seems to be a catch all to dismiss providing help. It's deemed as incurable and so.. yup.. you have FM... so you'll just have to make life adjustments to manage the pain as best you can and here are some meds but they don't actually help..

.....  I'd rather have had a name for what I feel too so I know what can be done about it although as you say there's no real course of treatment, just a lot of self-management -- frustrating!! 

my neurologist has been trying to help me with the migraines and FM but now even she is saying maybe it's just stress... (which I'm not denying - I get that my psychology wreaks havoc on my body... but please still help me! I see a psychiatrist, I go to counseling, I take psych meds, I've essentially stopped working... I'm doing everything I know how to do to manage my stress... so telling me it's stress doesn't tell me what to do about that  )

Oh well, I'm seeing my rheumatologist on Tuesday and hopefully she'll be able to offer something more? If not I just don't even know... I'm in so much constant pain and so fatigued... how can this be the rest of my life? 

I really truly understand how awful that feeling is Phoenix.  I hope the rheumatologist is able to help     

[Phoenix]

Thanks 

That being said, you may want to get a second opinion? I do have the tender points - but I don't wake up with headaches (ever really) - they build through the day and are the worst at night. I do have nausea but I think it's connected with GERD and IBS. I don't think headaches or nausea were linked to the diagnosis. Several doctors have diagnosed me with it over the last 6 months (I kept ignoring them and getting second opinions - but have since accepted it... kind of...) - but the main criteria for them (aside from the most recent rheumatologist who did the tender point test) was migratory pain in my muscles and joints with zero other explanation and major sleep disturbance... though I'm sure they took the headaches, IBS, depression and anxiety, etc. all into account. (Though at first everyone thought it was RA or my thyroid - but according to my labs i'm the healthiest person alive (ahhh)).

What type of doctor did you see? If you're still in pain - maybe you should get a second opinion? Or has anyone ever thought it might be chronic fatigue? I've been reading up and they seem very linked... the only real difference I can tell is that with chronic fatigue the exhaustion is more upsetting than the pain but with fibro the pain trumps exhaustion - but both have both.

I really do hope you find some answers though. It's kind of like w cPTSD... having a name allows you to google things and buy books which is one of the top things on my distraction/coping skills list.

[Dearg Schmael]

I am 41. When I was 22, I injured my neck at work, but after that my whole body hurt constantly. I had MRI's done, nothing. Doctors were befuddled. I was given a "fibromyalgia" diagnosis, which is just a way for saying you are in pain but they don't know why.

For nearly 20 years, I just dealt with this every day. I felt like my muscles were being injected with hot air or water. My whole body. Nothing would help. I couldn't explain it to anyone. No doctors or therapists could figure it out.

I got put on Nerontin (Gabapentin) recently after having been on Norco for over a year. It has been tremendously helpful. But I've never heard of anyone else that has this.

During that time though, I started uncovering a lot of my trauma and realized that I was an abused child. I always knew I was bullied, but had normalized much of my familial abuse and probably repressed some sexual abuse. Through mindbody work, I actually recalled an in-utero memory my mother had repressed in which she was punched in the stomach by her abusive boyfriend, which is totally crazy. I would guess that has a lot to do with it. 

[Sandstone]

Hi im 42 and was diagnosed with fibro about 2 yrs ago after having numerous tests for extreme tiredness and pain.
Hadn't had a flare up this last year untill 3 days ago lol now im just taking it easy.
I say i havnt had a flare up but for the last 5 yrs all i do is sleep.

I don't work due to my mental health so when i take my kid to school i go back to bed and get up when its time to collect him. Not a great life i know. Just cant seem to motivate. So tired no energy.
Iv resorted to taking stimulants to get me through the days at times. I know i shouldn't and i know im gonna have to stop one day before i start my emdr.

Thing is iv been taking one drug or another pretty much since i was 15.
Im also addicted to painkillers which i use for fibro.  It was a rheumatologist who diagnosed fibro. Weird thing is he asked about my childhood and any violence in my past. I told him yes. He diagnosed fibro. Didnt know the connection at the time. I do now lol.

[Kizzie]

Hi Phoenix - sorry, I missed your post.  I haven't had a second opinion as my GP and I are monitoring things to see if things get worse/more symptoms flare up and then we'll go from there. In my case joint and muscle pain can be related to my osteoarthritis and the fatigue to that and the CPTSD.  How is your journey with FM going now?

Hi Dearg Schmael - I was Gaba for over a year although it was for nerve damage in my face from Shingles.  It didn't seem to help me with the joint and muscle pain though, just the nerve pain.  One thing I've found on this forum is that what works for one will not work for another so it's very individual. That's great that you are getting relief on it. 

Hi Sandstone - Do you have a good GP and T to help you with the FM and CPTSD? Having both must be a struggle so I can only imagine you are fatigued and don't feel motivated  Was there something that this recent FM flare-up seems to relate to? 

[Sandstone]

Hi kizzie, iv just finished 3 months of therapy last week. She was lovely and switched the light bulb on re cptsd.
Not sure where i go now tho lol. Waiting for a self esteem group to start so thats good.

As for my flare, i bought some roller boots and skated for the first time in 30 yrs haha probably too old for it now.

[Hazy111]

Have you been tested for hypothyroidism?  Fibromyalgia is a very common symptom

[Perry1216]

I have not been diagnosed with fibromyalgia, but my mother has had it since before I was born. She most certainly has CPTSD as a result of her abuse from her M and F.