Fibromyalgia and Humira - does it work?

I am a newbie and found this forum today in my quest to learn more about Humira and Fibromyagia.

I have suffered with this condition from my early twenties and having entered into my 50s, I am encountering more pain and fatigue.

I have been diagnosed with everything from Cortisol Deficiency to Lyme disease. lupus, RA and the famous "it is all in your head syndrome".

This year, I have encountered a perfect storm which has sent my FM into increased pain and fatigue mode. I am not able to fully recover from one before another one hits, even with plenty of sleep and relaxation.

Here is my perfect storm: My father passed away in March 2013 - I was very close to him and spent 3 weeks making sure my mom was going to be okay. I did not start my grieving until September 13th - his birthday. 2) I have officially entered menopause which has been an interesting and bothersome experiment in temperature and emotional control. 3) I received my first ever below average appraisal at work which for an overachiever was horrifying (thoughts of being fired, etc.), and last but not least 4) my oldest son's marriage (very good news, very bad timing).

Since October, Lyrica is not reducing my pain. Each time my doctor increases the dose, the more I experience the "tiredness" that comes along with it. Hence my researching the option of Humira. My youngest son has Crohn's Disease and this medication has been life changing for him. There have been many times I wish I could try a dose and then it sinks in that it would take more than one does - bummer.

I have been reading information posted here - the best I have found by the way - and hoping that there is someone on this forum that does not have other major medical condition such as RA that have tried Humira. I have been tested and do not have RA or other AI conditions so I am seeking information. Any information (and support) are welcome

Hi, Susan, and welcome! I'm so glad you found us and joined in. Thank you for the compliment. Yes, I think we are one of the best fibro forums out there.

I have never heard of Humira being used for fibromyalgia. Humira is used primarily for types of arthritis and Crohn's disease. These are autoimmune problems and fibro is not an autoimmune problem from what doctors know so far. It isn't inflammatory. They think it is a neurological problem and that's why medications like Lyrica, Savella, and Cymbalta are usually the first choice for doctors to prescribe.

I have ankylosing spondylitis as well as Crohn's disease but I have chosen not to take Humira or Remacaide infusions because of the safety considerations. With my family history, it would not be a good idea. But I'm very happy this is helping your son!

I decided to try a more natural route with fibro and, so far, I've done very well with this. Some of this might help you too, since it's helped other members. But, unfortunately, what works for one doesn't necessarily work for another with fibro. It's more a trial and error situation. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin that has helped me significantly with the pain. I'm sleeping better, too. I also do daily stretching exercises, daily gentle exercise (I walk and/or swim), and I pace myself when doing things. I have also found that gentle massages help me. All of the above help me be in control of my pain.

I also do trigger point therapy on myself. I bought a great book on Amazon that is excellent and shows where the trigger points, that are causing us pain in various areas, are located. Much of our pain is referred pain. When I get a pain in my side, I know it's coming from a trigger point in the middle of my back! I didn't realize this until I got the book. There are diagrams that show where to look for the trigger points. If you are interested, it's called The Trigger Point Therapy Workbook. I know they sell this at Barnes and Noble, too.

"All in your head syndrome". ~sigh~ It's not all in our heads and thank goodness the doctors are finally figuring this out. I've often wondered if a man were to go to a doctor with fibro, if the doctor tells him it's all in his head. I doubt that. If you do have a doctor that is suggesting this, fire him/her and find a good, board certified rheumatologist or internist that will help you learn to live with this illness. This forum is great for that too.

I'm so sorry about your "Perfect Storm" that has happened but you will come out of it. I had a perfect storm 16 years ago. My husband and I were in the process of relocating to Florida. We had already sold our home of 28 years and bought a new place in Florida. Thirteen days before the move, he had a massive heart attack and died. He was in Florida at the time since he had started the new job. I was up north going through 28 years of accumulation. I was able to get out of the deal for the house we had bought together since I couldn't afford it now and I bought another home. I didn't know a anyone in Florida but my Mom and one cousin at the time. I didn't know the area either. Then, seventeen days after my husband died, my mother had a brain-stem stroke! She was in intensive care when I came down to buy another home. I tried to take care of her when she recuperated enough but didn't have the strength or stamina. So, this was an absolutely horrible time in my life but I came through it. We always do if we believe we will! I now have my beautiful home in an area that I love, I've made wonderful friends, my Mom has since passed on and isn't sick anymore and I have wonderful memories of my husband and our life together. Fibro and depression tried to beat me down but I kicked it to the curb. You can, too, and start to feel better.

But, if you feel you are getting progressively worse, please see a rheumy about this. Fibro isn't a progressive illness. Sure, when we are in a flare, we will be worse, but the flares end. I was having worse and worse back pain, got to the point that I could barely walk, and headed to the rheumy and that's when I discovered I also have ankylosing spondylitis along with fibro. I was given the ibuprofen and the muscle relaxer and I'm so much better now. So do keep this in mind. Not all our pain is caused by fibro.

If you haven't already, do read Fibro 101...the first thread on the forum. There are good links about fibro and you will learn a lot there. I've had fibro for decades and am still learning new things. When you first go into Fibro 101, you will find an interview with Dr. Daniel Clauw who is one of the top doctors studying fibro. He explains very well what doctors think are going on with us. I think you will find this interesting. There also is a great link about maintaining a positive attitude when you have chronic pain. This has helped me and others quite a bit. I like to read this and remind myself when I'm having one of those days. Also, there are links about the supplements I mentioned and how they work in our bodies. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Thank you for all your responses! After reading 101, it is clear that the doctors have landed on more of a central nervous and brain disorder. I always knew I was a little loopy on the brain side .

So, now I have a decision to make when I go back to my doctor in 2 weeks (general practitioner - I have stayed with her because she works with me and reads the research I take to her). Do I stop the Lyrica because it does not seem to work and go back to Advil or stay the course and let me body try and recoup without further change.

I have been on vacation for Christmas and I am dreading going back to work - it takes so much energy. I have a positive attitude most of the time however the longer it takes to bounce back, the harder it is to put that smile on my face. My hubby always says (he is very, very supportive), "Fake it til you make it". Sometimes that is what it takes.

Thanks again.

Hi Susan ~ I'm so sorry for all that you have been through this year with your father's passing in addition to your health issues. I know from experience that stress has such an impact on our health and seems to intensify everything. I hope that this new year coming up will allow you to have some time for yourself to grieve, rest and heal. I'm saying a prayer for you today - hugs!

Thank you for adding this information. For years my husband, who has a high stress job, has been experiencing random pain. Every doctor has diagnosed something differentWhile on vacation his hands started peeling, a dermatologist diagnosed a thyroid condition. Bloodwork showed a high RA factor. Embrol was prescribed. A new doctor switched him to Humira and the random traveling pain has started again. His RA doctor says he doesn't know what his pain is but I think you have pointed us in the right direction.
Thank you