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FMS, MPS, and Endometriosis?!
2 Replies
rnsarah32 - May 7

I'd like to tell you all my story and I am eager to find out if anyone's story is similar to mine...

I have been having pain for over 5 years. It started in 2007. I had very bad pain in my neck and upper back. Occasionally it would spread to my mid and lower back but mostly it was upper back pain. I knew from the beginning it was a muscular problem. I felt the pain in my muscles. The pain was deep, aching, tight and ALWAYS THERE! I had painful muscle spasms. It was hard for me to get comfortable to go to sleep. I was never in agony, I just always felt shitty.

I went to my PCP who sent me to physical therapy and to get some X-Rays and MRI's (which were normal) he prescribed me some muscle relaxers and told me that my pain was most likely stemming from a depression/anxiety disorder so he put me on a SSRI.

Physical therapy didn't do anything except tell me that my core muscles were weak and that my posture was the problem, so I thought maybe if I worked out really hard and built up my "core muscles" I would feel better. I did this for 4-5 days a week for a year. i LOOKED GOOD but still felt no relief and was still having the same pains... So I got frustrated and when I started a new job I stopped going to the gym and continued to live with my pain.

About two years ago the pain got worse...I don't know if it increased, or if just living with it for years had caused my pain perception to change..but I knew I could not take it anymore and could not ignore it. I saw another PCP who told me to see a chiropractor. I saw a chiropractor until my insurance would no longer pay for it (and it wasn't helping me anyway). By this time I had tried several different kinds of antidepressants (zoloft, lexapro, wellbutrin, cymbalta etc.) none of them did anything for me.

I also tried to see a massage therapist who specialized in "myofascial release" and i payed a lot of money for massage each week until I could no longer afford that either. The massage therapist told me that even though my pain was my upper back, she thought it was my QL muscle causing the problem (QL is in the lower back). She mentioned that every time she would get into the deep muscles the QL would "kick her out" and she couldn't get anywhere. I stopped seeing her because It wasn't helping and I felt like everyone was using me for a paycheck but nobody was helping. pain was getting worse and I was starting to lose my mind. I had other funny symptoms like cracking joints, stiffness, FATIGUE, bloating, migraine headaches etc. Sometimes I would wake up and my wrists would be hot and bother me but they would not be swollen. Other times my knees would be red and hot, but not swollen....

I also frequently break out in a rash (PINK, FLUSH-LIKE, HOT, not raised, not itchy, not painful) on my body. It starts on my chest and creeps up my cheeks and down to my extremities. I can feel it creep as my skin begins to get hot in other ares. It looks like red, hot, blotchy spots on my chest, face, shoulders, arms, legs, knees.
The rash would come randomly, whether I was happy, stressed, calm, day night, at work etc. It is embarrassing! I would feel it creeping while I was in my car driving to work and I would have my AC on full blast in January because if the cold air blasted on my chest the rash wouldn't spread (vasoconstriction).

So I had enough...I went to a Rhuematologist and she did labs and a MRI and said everything was normal and that my problem was Fibromyalgia. She told me my only options were lyrica, savella, or cymbalta. I had previously tried Cymbalta which did nothing, so I tried Savella...I ended up being allergic to Savella. Finally I tried Lyrica and it didnt help and made me feel really dumb and twitchy.

I was at the point where I was ready to kill myself I was suffering so much. I was in pain, had migraines, was irritable, couldnt sleep bc of the pain, and breaking out in a rash every other day....

My last resort was a neurologist that was highly rated for fibromyalgia/myofascial pain...i have been seeing him since last summer. He is convinced that it is not fibromyalgia....that it is myofascial pain syndrome.

He is also convinced that whatever all this is, it is stemming from my lower back (HMMM..just like the massage therapist?)
He believed the problem was my psoas muscle tho, not the QL.

I believed him over all the other doctors that I saw because I DID HAVE HUNDREDS OF TRIGGER POINTS ALL OVER MY BODY.
SO.....he has been giving me Botox injections into my psoas muscle. He says that once the muscle relaxes then all of the other connected muscles and trigger points will relax. It helps a little but I still feel like I haven't figured it out yet. I KNOW THERE IS A CONNECTION!

Finally, the last time I saw my gyno I admitted that it hurts a lot when I have sex (which i always thought was because my husband was larger and i have fibromyalgia?) My gyno said I should get a Laparascopy and get tested for Endometriosis.

On Friday I got the Laparascopy and it turned out that YES, I had mild Endometriosis. The gyno lasered off a lot of the adhesions. He told me afterwards that most of the lesions were on the back of my cervix and connected to my organs/muscles behind my uterus. I have a follow up appointment with him next week to talk about what my options are.

Maybe the endometriosis (which had settled posterior to my uterus/cervix) has caused my muscles to go into spasm and has triggered trigger point after triger point until my whole body was out of wack.....Maybe the rash is a hormonal thing?????

What do you think? Has anyone been in this situation? What was the outcome?


kvc33 - May 9

I don't think that endo is your only problem, however it could account for the low back pain. Endo is one of the associated conditions of fibro. Can't imagine that it would cause rashes, migraines and hot joints either. It sounds like you are reacting to something in your environment or to food additives. I would suggest you get tested for food allergies if you haven't already and keep a diary of your symptoms and foods eaten to see if there are chemicals that you are reacting to. Perhaps some of your problems are hormonal. Have you had extensive testing done? Have you kept track of your symptoms in relation to your menstrual cycle?


tuchacasalduas - May 15

I can't believe I just read my story on your post. I'm having a laparoscopy in a couple of weeks and until yesterday I never connected the dots! How are you today? Did your pain go away? Was it the endometriosis?



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