Need some guidance and input!!! (Fibromyalgia)

Posted by nanke99 @nanke99, May 13, 2017

Hey... OK so it's taking me over a year with multiple diagnoses, but the current and seemingly final is fibromyalgia- no RA or anything else added in, as was previously thought.
While relieved to have some concrete idea of what's going on, it has been a long and extremely painful and depressing & anxiety filled process. All of which, not the least being the often excruciating pain, have taken their toll.
I really need to know about others experience, SPECIFICALLY with fibromyalgia. The amount of pain I am in nearly all of the time is shocking to me! I can't believe that fibromyalgia causes this much pain! including in my joints and bones ( at night it's like my whole femur/ leg, hip joint, knee joint and top of shin, have been broken- they hurt so much), & my weakness & fatigue is so much I'm operating at 20% of what I used to be. My muscles ache and throb just from standing.
Please describe to me with as much detail, what types of pain you have? Where? On a scale of 1 to 10 what is the worst, and how often?
What medications are you taking and what dosage?
I have just stopped taking sulfasalazine, but am continuing the Cymbalta & raising my dosage.
Thanks...

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 13, 2017

Hi @nanke99,

We have a few existing discussion groups where you can meet others talking about fibromyalgia:
– Fibromyalgia Pain http://mayocl.in/2hgUGcv
– Chronic Pain members - Welcome, please introduce yourself http://mayocl.in/2qgkCXo
– is the pain from hip or back? http://mayocl.in/2pvD2q9

Please feel free to scroll through the discussions and tag members to connect with them.

In the meantime, I’m tagging @edriaragosin, @luladavis, @gmonroe1986, @happymom, @learningtolive2, @Gavin @mlemieux, @miss2sassy and one of our wonderful Mentors, @sandytoes14, since they have all posted about issues with fibromyalgia, pain management and medications, and may have something to add to the conversation.

nanke99 | @nanke99 | May 13, 2017

thank you- i will post there as well...

PinkPain51 | @pinkpain51 | May 13, 2017

I have some experience with Fibromyalgia. I was diagnosed when I was 37 when I didn't recover from a hysterectomy. The pain never left my obdomen. I had reocurring bladder spasms, infections, and just never really got better, All my long bones hurt. I am now 51 and found out after dealing with upper back pain for years that I had severe Osteoporosis. My thoracic spine was crumbling and I was fused. I guess what is interesting to note in my case is that I had other things going on that were not diagnosed so I would suggest that you not give up on finding answers. We are our own best advocates. Cymbalta helped me for several years before my spine went. I think it was a good drug and I have tried lyrica but it made me gain weight and more depressed but I have known people who are on it and it also has worked well. Fibromyalgia can be very painful and what makes matters worse is that it was previously viewed as being psychological or in a person's head which I didn't find helpful at all. I wish you well. Suffering can be a lonely business.
Sincerely,
Kristine

Jen, Alumna Mentor | @sandytoes14 | May 15, 2017

@nanke99 Fibromyalgia can be so different from one person to the next. Until I developed a good routine of meds, eating well, getting better sleep and moving even just a little bit, I hurt everywhere, everyday. I felt like I had the flu a really bad case of it, all the time. And the constant fatigue just added to it. Now I take Cymbalta 60 mg daily, 15 mg Baclofen 2-3 times a day and 25 mg of Lyrica daily.
There are days when the pain in my knees, hips, shoulders, elbows and mid back hurt beyond anything I thought possible. I mean, I cry. The pain most days feels like I'm bruised deep within. My thighs feel very tight too. On other days it feels like there are knots in my muscles. I used to be very active and now it's a struggle to walk to take my dogs outside. These days my Fibro pain is a 4-5. I have cervical spine pain which is 8-9 most of the time. And yes, I can tell the difference between the two. I've had spine issues for 20 years and diagnosed fibro 5 years ago. I could go into details with all the meds I've tried. Send me a private message if you want more. I don't want to bore you!

GailBL, Alumni Mentor | @gailb | May 15, 2017

I was taking Baclofen 10 mg 3 times a day, and Gabapentin 300mg 2x day for back, hip, and leg pain. I decided to get off them, and amazingly, my pain got better without these medications! I had the same symptoms with my thigh muscles very tight and knots in my muscles, that you describe. I have been able to push past the remaining pain in my thighs and hamstrings to walk up to three miles, with some pain, but not much. The more I walk now the better I feel. I still take Tramadol for arthritis because I can't take NSAIDS. I have found that with Tramadol and Ibuprofen, my pain is hardly there. I only use the ibuprofen when the pain is interfering with my daily life. I'm going to try Active Release Therapy (ART) when I return from vacation. BTW, Gabapentin is the earlier version of Lyrica.