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new to forum and could use advice on fibromyalgia

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Posted 12/29/2012 9:46 PM (GMT 0)
i have had rheumatoid arthritis since 2008 and possibly since 2005. I was in pain in 2005and doctor never checked me for rheumy til 2008. I now see a rheumatologist and have been on simponi, enbrel, methotrexate, leflumonide, prednisone along with taking cymbalta and seroquel for severe depression and anxiety. I see a counselor and i think he is good, the psychiatrist I see i am not happy with him. Anyway I never heard of fibromyalgia until my counselor mentioned his wife had it and takes cymbalta for it. I looked it up and I cant believe my rheumatologist has not said anything about it. I have been in severe chronic pain for the past year, and now i am on sick leave cause of the pain in my joints, severe depression, anxiety and panic attacks. I have been complaining of severe fatigue, severe muscle aches, swelling in hands and feet along with pain, I know I have rheumatoid but many times I dont have swelling but hands and feet feel swollen. I am always in pain tho. The mornings and late nights are the worst. My muscle pain is all over my body, chest, thighs,butt, lower calfs, neck and shoulders are the areas my muscles hurt the worst. I have a lot of stifness that will loosen up as the day goes on. Pain will spike throughout the day. It never feels good tho. I get sick and vomit just about every morning, and I have a constant cough that I cant get rid of. I do not sleep well and always wake up after 2 or 3 hours...even with seroquel. I really think i have fibromyalgia and wondering how I get my rhemy to check me for this. Its not like I have not mentioned these symptoms each time I see him. Any advice would be greatly appreciated.
Posted 12/29/2012 9:56 PM (GMT 0)
Just flat out ask. You have to take charge of your health. There's no test to diagnose fibro, it's usually when everything else has been ruled out that they begin looking to see if you have fibro. Beware, your rheumy may one of the ones who don't believe in fibro. If that's the case you'll have to start searching for a new one.
There's a very helpful post at the top of the forum fibro 101 that can give all sorts of great help. Good luck and there's plenty of support here and a great storage of knowledge b
Posted 12/30/2012 6:51 AM (GMT 0)
Hi, Sleepiest. I agree that you need to find a different doctor if your present one won't take you seriously. A lot of us are all too familiar with that runaround! You could well have Fibro, or maybe it's something else causing your chronic pain. But you need someone who will examine you thoroughly and actually listen to you.

The getting sick and vomiting everyday doesn't sound like Fibro to me, though. Have you told the doctor about that? I wonder if it's medication-related?

We really are supportive here, so I hope you'll stay around and become one of the family.

Debbie
Posted 12/30/2012 9:15 AM (GMT 0)
Sleepist- I think I would be looking for a new Dr. Fibromyalgia is in the rheumatologist field. He knows what it's all about. My concern is that he ignored it or didn't share it with you. The meds your on are helpful for fibro. There are some others meds out on the market used for the treatment of fibro.

Your symptoms you described really sound like fibro. If you do get a diagnoses educate yourself about fibro. I bought a book and I was amazed what I learned from it. My dr's never shared the stuff I read from the book. It played a big part in finding a treatment plan that works for me.

Just feeling validated when you get your diagnoses is huge. You finally feel like it 's not all in your head. I guess the biggest thing I have learned is to do things in moderation. I do the following for my fibro- light excercise, rest, try to eat well, magnesium, Vitamin D, subutex and lots of heat.
Posted 12/30/2012 4:13 PM (GMT 0)
Thank you, everyone! I am thankful to have found this forum. I do not get a tremendous amount of support from family and friends. Dont get me wrong, they listen but think most of it is in my head.I have worked 20 years in my current career, and have always been a fantastic employee. Went into work in immense pain, sick, hardly able too work and so fatigued from lack of sleep. I am now completely mentally and physically incapable working. I have swollen joints on my hands, although they feel a lot worst than they look. My left hand has no strength and i have been checked for carpel tunnnel and do not have it. Rheumatologist said the rheumatoid is causing it. My muscle aches throughout my body are so painful, not sure whats worst, the rheumatoid or the muscle pain.My rheumatologist and family doctor disabled me and I am now submitting paperwork. Im seeing a counselor for depression, panic attacks,anxiety and horrendous night mares that I have had for years. He referred me go a psychiatrist, and after 20 minutes he told me to go back to work. I told him my rheumatologist and family doctor disabled me, and he said go back to work. I was shocked and soo confused. The psych placed me on cymbalta and seroquel, and took me off the gabapentin/ neurontin. I went back to the counselor, explained what happened and he seemed shocked. Went for a follow up with family docotor and he asked how it went. I explained what occurred and he said your not going
to him anymore. He scheduled me to see another psychiatrist. Family doctor placed me back on neurontin and took me off cymbalta. Anyway, I just want to get better and I am sick of being in pain all the time. I just want my life back. Sorry for the long post.
Posted 12/30/2012 4:25 PM (GMT 0)
I think we've all been there. I went through the same thing with my dr not really listening to me. I chose to see a dr that would listen. Think of it this way you pay these people, so they work for you. If an employee only did half his job would you keep him?
If your quality of life is made worse by these problems then your dr is not who you need right now. In the fibro 101 sticky at the top there's even information about drs who do treat fibro so maybe there's one in there to help you.
Posted 12/30/2012 5:19 PM (GMT 0)

I have morning vomiting and cant eat at all until evening in order to keep food down. I also have bowel issues. It is part of fibro for some people. I had evey test done known to man and aside from gerd and a birth defect somewhere everything is fine on me. It comes and goes like everything else but I just cant eat during the day or I throw up:/

 

 

 

Acheybody said...
Hi, Sleepiest. I agree that you need to find a different doctor if your present one won't take you seriously. A lot of us are all too familiar with that runaround! You could well have Fibro, or maybe it's something else causing your chronic pain. But you need someone who will examine you thoroughly and actually listen to you.

The getting sick and vomiting everyday doesn't sound like Fibro to me, though. Have you told the doctor about that? I wonder if it's medication-related?

We really are supportive here, so I hope you'll stay around and become one of the family.

Debbie

Posted 12/30/2012 5:26 PM (GMT 0)
It's so frustrating when the doctors can't even agree with eachother!

Sounds like you've got a great positive attitude, though, and that will help you a lot. And don't ever worry about your post being too long! That's what we're here for. It does help to just get it out sometimes.

Debbie
Posted 12/30/2012 5:31 PM (GMT 0)
Hi, Sleepiest, and welcome!  You've heard it in this thread but I'll say it again.  Get another rheumatologist and ask, before making an appointment, if they treat fibromyalgia patients.  Ask around.  See if there is a fibro support group in your area.  Your local hospital may know or look in the phone book.  They could guide you to a good rheumy. 

 

There are some doctors out there that don't believe fibro is a true illness.  Many of us have been accused of being hypochondriacs or having mental problems even though fibromyalgia is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few.  Some doctors are just in the Dark Ages when it comes to this illness and you need to do your homework when choosing doctors to help you.

 

Most of the symptoms you have listed are common with fibro and RA but the sickness with vomiting isn't.  You are taking quite a cocktail of drugs so perhaps one is causing this problem or some are interacting with others to give you this side effect.  I'm just guessing but it makes sense to me.  It's worth looking into.  There is a great site called Drugs.com where you can type on the name of your medication and it will tell you all about it, including side effects.  I know I would be checking that out if I were you.  Be sure to let your doctor know, too!

 

I have a form of RA called ankylosing spondylitis and I take ibuprofen with food and was given a muscle relaxer called Robaxin.  That muscle relaxer made a significant difference in my muscle pain so you might ask about that.

 

With fibro you will feel like your hands and feet are swollen but they really aren't.  Your swollen joints are most likely the RA.  You are taking a lot of meds and maybe some should be switched because it doesn't sound like they are helping you.  If you see that there is no difference when taking a medication you should let your doctor know.  There are quite a few meds for arthritis and maybe another med would work better than some you are taking.  Besides, what's the point of putting these chemicals in your body if you aren't getting any relief from them? 

 

I see you are taking prednisone, too.  I took that for Crohn's disease and it did affect my bones so you probably should ask about taking calcium supplements and extra vitamin D3 (that helps with the absorption of calcium) to help prevent osteoporosis.  I take Citracal because it's more easily absorbed.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links for you would be the ones called Symptoms and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.  Be sure to read all the links.  You will learn a lot and we do need to be our own advocates with this illness.

 

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

Posted 12/30/2012 5:42 PM (GMT 0)
My current rheumatologist is at the cleveland clinic. I see him next week and will bring up the fibromyalgia. I seem to be one of the individuals with rheumatoid arthritis that does not get relief from my disease. The cymbalta did nothing for me except make me sleepy. I felt no difference in pain level. Im really concerned if my disability does not get approved, not sure what the heck I will do. I will not be able to work, and I have a little girl to provide for. Seems the stress keeps building and I know that dosnt help me either. Feels good to share my issues with people who understand. Thanks everyone.
Posted 12/30/2012 5:48 PM (GMT 0)
The Cleveland Clinic is excellent and I used to use them when I lived in the Cleveland area so your doctor most likely is good.  Some doctors just don't mention  what they are thinking.  You need to go in with a good list of questions and get the answers you want to know.

 

Sherrine

Posted 12/30/2012 6:19 PM (GMT 0)
Im writing down all my symptoms along with questions. Going to ask about fibromyalgia and have him give me a straight answer. Going to read fibro 101,actually read a lot of it already. I wish fibromyalgia was something you can actually see, sometimes I wonder myself....That is if I actually have it. I know I have severe chronic pain with little relief...Counselor thinks I have ptsd and bi polar disorder. Psychiatrist has to actually give the diagnosis though...I read about fibro fog, I forget stuff all the time...I csn be driving and have to pull into a parking lot for a few minutes to remember where I'm going. Cant remember conversations and distracted easily, forget what i was talking about. I guess this symptoms of bi polar as well. Ughhhhhh so many issues.
Posted 12/30/2012 6:24 PM (GMT 0)
The memory problems can easily be fibro, too.  I take folic acid and krill oil and those have helped me with my memory issues....most of the time.

 

Sherrine

Posted 12/30/2012 10:10 PM (GMT 0)
I just read about fibromyalgia tender points, and was wondering what they feel like when pressed. My muscles are sore all over and my girlfriend asks if she can massage my muscles. I prefer she dosnt for the pain spikes when she tries. There are times when she will hit areas on the back of my head/neck/shoulders and it and i pull away. She will say, I barely touched you. I know Im sorta self diagnosing, but I need to figure out whats wrong. Is there anything i can check on my own. I know i have many of the symptoms, writing all my symptoms down. So many times, I forget to mention something when I meet with doc. They are always in a rush and I usually do a bad job at articulating everything. Mostly cause I just dont feel well and am so tired. Thanks for all the information. Ive become somewhat used to pain so, when something hurts a little more I pretty much just say it hurts. I need to articulate more. So how would I describe a tender point. Thanks again!
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