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Newbie post with questions on fibromyalgia and therapeutic massage.

Oct 17, 2018 6:10 AM

Hi 👋🏼 everyone. I am a newbie here. Your stories truly resonate with me. I was diagnosed 5 years ago with Reactive Arthritis (never heard of it) some doctors now have called it Spondyla Arthritis. The pain initially began behind my left knee as I took off my boot after a country swing dance so I naturally thought I pulled a muscle. Boy was I ever wrong. By week 3 inflammation encircled my kneecap front to back, my knee looked like a huge hot cantaloupe and the pain was absolutely intolerable. Additionally, I also had severe pain in each of the tendons running down from the knee to the foot. It was a stabbing pain I will never forget. I had to lift my leg in and out of the car with 2 large ice packs aced bandaged to my leg to keep them from moving. The orthopedic on call at the ER sent me away with advil. I recall the long walk the next day for an MRI as the most pain one could possibly bear in a life time. Because the machine requires you to sit close with your leg pushed straight in I simply couldn't do it. Straightening my leg was excruciating I just couldn't. I cried as the tech tried to manipulate my leg in that damn machine. When it was over I had to walk several corridors to get to my car. I wish I had the courage then to ask for a wheelchair. Fast forward 3 more weeks and I couldn't hardly move at all the inflammation had now spread to many joints in my body including shoulders, neck and the hips being the worst hit. I was referred to a rheumatologist as no tears were found on MRI. And this time I was in a wheelchair. She started me on large doses of steroids, Sulfasilazine and more advil. I was determined to never ever go on a biologic. I tried acupuncture for a couple months. It helped the sciatica yet nothing else. After 4 months though I reluctantly agreed to try Humira because I now had to take tramadol and remission was said to be possible while on it. I had no plans beyond that one word ’remission’ it gave me hope. My 3 month check up was not good. I was told I would also need to take Methotrexate, another drug I took reluctantly. Within a year Humira stopped working. I was on Enbrel next which stopped working after 18 months. I could not tolerate the methotrexate so stopped that. Now I’m on Remicade and reaching my 3rd infusion. My worst pain hovers above an 8 in both hips especially when I walk or sit for longer than 15 minutes. The Remicade is helping my painful stiff neck, knees and the costochondritis that showed up in my chest in March. I have given up at this point for full remission. It's now quality of life. My rheumy suggested fibro as a co-factor but I'm not 100% convinced of this diagnosis. Has anyone been told they might also have fibromyalgia after going on biologics for an autoimmune inflammatory arthritis? How did your doctors diagnosis this?
My rheumy did say therapeutic massage was helpful to some.
Has anyone gotten any pain relief from massage? Did it hurt? I can't lay on my sides, sit or walk for too long before both hip sockets explode in a hot mess of pain and inflammation. When not moving the area is extremely tender to the touch. The thought of pressing and kneeding that area sounds like it would leave me not feeling better but in a lot more pain like physical therapy did.
If you have had any pain relief from massage therapy please tell me more about your experience. The type of condition and massage and how long you did it.
Thanks so much in advance.

Oct 17, 2018 7:33 AM

Hi BB welcome to the group. I'm sorry to read about all the pain and illness you have experienced.

I have fibromyalgia. I had symptoms for 3 years but was only officially diagnosed in March. It takes a long time to diagnose as the rheumatologists have to rule out all other possibilities such as lupus and other arthritic conditions. So it was a lot of tests and waiting for answers. In this game you have to be patient! 😂

I have tried massage; initially it hurt but then there is some relief, but not enough for me to mentally put myself through it again. I use a TENs machine now following a pain management course. That has helped. I'm able to do some housework and exercise such as a long walk or swimming while it is on. It stops helping when you take off though.

What I have found beneficial is hot bath's with Epsom lavender salts, hydrotherapy or gentle swimming and following a antiinflammatory diet (have a look on Google, there's lots of tip's and recipe's).

You're absolutely right about chronic pain being about finding a good quality of life. It's a daily battle, but with love and strength you can beat it. Remember to congratulate yourself when you win those little battle's like opening a jar by yourself, Enjoying a day with your children/family or cooking a meal. Remember to love yourself regardless of any limitations you may now have. I was devastated when I started to lose the ability to do certain things with my children - I have 3 girls - due to the fibromyalgia and degenerative disc disease I also suffer from.

If you ever need to chat or have a rant I'm always willing to listen 🤗

Take care

Love Hayley x

Oct 17, 2018 8:13 AM

Thank you Hayley x,

Interesting how they test for it. I already have arthritis so how can the tell one from the other? Hmm.

A tens unit sounds promising and is something I want to ask my rheumy about. Thanks for that.

I’m with you on epson salt baths and diet. It may not take away all the pain but if it helps me move and take fewer medications, I do it.

I can’t say I do anything close to self congratulatory. I think that’s why I’m on here. I read a book by Karen Duffy and her debilitating Sarcoidosis disease where she encouraged using apps like this where we can talk with others about our shared conditions. Like you I was completely blown away with my dwindling physicality. I had 2 fraternal boys starting 6th grade at the time to care for.

I will take you up on your offer, this I’m sure. Thank you for sharing and caring.

Stay well

Oct 17, 2018 7:19 PM

BunnyB, I have the fibro, OA, and Sjogrens which several doctors now suspect is affecting my joints. I've not heard of the Reactive/Spondyla Arthritis but it sounds bad. I am on Plaquenil for the Sjogrens and gabapentin & Tramadol for the fibromyalgia, OA and chronic spine issues. I've had 2 massages in my lifetime and it was wonderful. I wasn't diagnosed with the fibro or Sjogrens at either time but I did have the symptoms. But my symptoms have worsened the past 2 years and I don't know if I could handle the kneading that was done before. My last PT therapist who thought kneading the fine knots out would be helpful, yeah I don't see him anymore because of the delayed after-massage pain. That the only experiences I've had. Hopefully other's will chime in soon, but most of us do not post on a daily basis. And welcome to the community! Hugs love & prayers you can find an awesome massage therapist to help! 🙂❤🙏🌼

Oct 18, 2018 5:43 AM

Welcome to the community. I'm sorry you have chronic pain. I have fibro and OA. I've had 1 massage. Never again. I hurt so bad. But I know people with fibro who have regular massages and love them. Everyone is different.

Oct 18, 2018 9:59 PM

Thank you both for sharing. 💕FlappysLady81, I was offered gabapintin last month. So many I’ve talked to say never take it. Does it help with night time pain? How do you feel in the morning? Right now I’m struggling to fall and stay asleep. Trazadone was also offered but the morning druggy feeling turned me off to it. I take Celebrex and tramadol. Could not move without them. The generic Ambien worked until they switched formulas. What’s out there today generic wise is ineffective.

Appreciate your input!


Oct 19, 2018 1:06 PM

I am super sensitive to most pain relieving or psychiatric meds (due to some genetic defect of absorption & metabolization). I have only been taking 300mg of gabapentin at bedtime for over 4 years, because it made me sluggish and over sedated. My doc added up to 3 100-mg capsules in addition to the nightly 300mg, in a 24 hour period, about 3 months ago, to take when I'm having a flare up of pain. I noticed when it's take 1-2 extras at bedtime I am foggy headed for half the day following the additional meds. Unfortunately for me he just increased me to 300mg twice a day, only I haven't home to try it. I'm afraid it's going to oversedate me and I'll likely sleep. I'll let you know how it goes. But if it does like when they started me on 900mg/day, I won't be able to stay awake and I'll refuse to take the extra amount.

Oct 20, 2018 12:13 PM

I've been on gabapentin for a few months now and I've noticed a difference. I get some sleep now, about 4 hours compared to my previous 2-2/1 2.

I take 600mg 3 times a day with tramadol and paracetamol.

Hope you're doing good 🌹

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