In October 2011, I went to my md for pain in my back under my left shoulder blade. We started with an xray or my back that showed arthritis. I had negative results of an MRI of my spine, CAT scan and Ultrasound of my stomach and EMG of hands and wrists. During this testing, I started to feel flu-like body aches. So after my bloodwork came back clear, she diagnosed me with fibromyalga (fibromyalgia), but none of the meds specifically for fibro worked. Within the last few months, my pain has gotten worse with burning, achy feet/toes and hands. It has gone from 2-3 flareups per week, to one every day, some times lasting just about all day. My md has said it is anxiety that is causing the pain and has given me numberous meds for depression and anxiety. I did not feel like this was the case and requested an apt to a rheumatologist. My md complied, but only to appease me and she still shoved these meds at me. She insisted I see a certain rheumatologist, but he is not available for a month! This has ruined my relationship with my md because I feel like she is not listening to me. I cannot take this pain much longer as it is now interferring with my daily activities. Should I switch md's in the middle of this? Will they give me my chart with all my test results and meds I've tried? Should I make an apt at a different rheumatologist in order to get in to seem him quicker? Perhaps also see a Neurologist (I hear they take months to get an apt)? I need answers quick so I can get some kind of relief! What on earth could this possibly be?
I do have arthritis in my feet (they found it during an MRI when I had a cyst on the top of my foot) and in my back
I smoke 15-20 cigs per day
I am female, 37 yrs old
An EMG 4 years ago after I had numbness in my hand showed some nerve issue in my neck--went for PT.
An MRI 10 years ago showed a slight bulging disc and dengerative disc disease but the recent MRI showed NOTHING!
I had a child 2 1/2 years ago and they found I had anemia and gestational diabetes, but my recent blood work tested negative.
Since the birth of my child, I have hyperpigmentation on the upper lip and the littlest scratch (doesn't have to break the skin) leaves a dark scar on me.
I went through the same slew of tests.
I was misdiagnosed with Fibromyalgia for 12 years or so.
It took a specialist in Lymes disease to know regular labs do not show results properly for Lymes.
I have Lymes, Babesia and Mycoplasma, all from a tick bite I never found.
Lymenet.org or .com can find you a dr. In your area.
Do not go by maps of active Lymes areas. They recently found birds have been dropping them all over and these "tick diseases" which it sounds like you have, are expanding their usual territory of the NE, NW and mid West.
Cases in Canada, UK etc are on the rise too.
The first thing I suggest is to quit smoking. Smoking, as I am sure you know, causes all sorts of problems. It is not helping you and it is contributing to many of the problems you are having.
The second thing I suggest is to see a rheumatologist who specializes in fibromyalgia. FMS mimics many other diseases and conditions, so it is a RULE-OUT disorder. Check for lyme, lupus, and any other autoimmune disease.
How is your thyroid?
Anxiety can exacerbate anything that is going on in you. Get support for yourself-friends, relatives, partners, neighbors, faith community members, to take some of the tasks of raising a 2 y/o off your hands. Stress is a SIGNIFICANT influence on all the conditions that you list.
Join a group where you can express and discharge your worries, anger, fears, and sadness. Keeping that inside yourself overloads yourself.
Aspirin helps with pain in the hands and feet.
Food: keep away from fake sugars, sodas, processed foods. Stay as unprocessed as possible with foods. Try eating tomatoes (blood cleanser) once a day for a week, and see what happens.
Anti-depressants help with the moods, if not with the pain. I am taking Savella which barely touches the chronic pain in my hands, but my mood is much more stable, and so I am able to tolerate more that the day brings.
Take your time with this. It is overwhelming, and frustrating. Take each day at a time. Make few plans, and whatever does not get done is FINE! if you can accomplish one thing a day, or even every couple of days, that is an achievement.
You have legal rights to all your medical files. A request may cost between $5-$15 for copying.
Changing doctors in the middle of this is fine. Ask around to see who has had success with their doctors. Talk it up. There are tons of people out there who go through this too.
You can also find doctors through your hospital. Find the best hospital in the area, and go to their doctor referral site. This is often a good start.
Thanks for the advice. My Md has stated a lot of the same things you have; however, I know that is is:
1. Not stress. I have a very supportive husband who assumes/assists in a lot of the household chores as well as the care of our daughter. My parents live just a few houses away, so I have a great support system.
2. Not depression/anxiety. I was depressed for awhile after adjusting to motherhood. I know the feeling and am quite happy with my life. As for anxiety, the only anxiety I feel now is not knowing what is wrong with me! Besides, the pain and burning still happened even with anxiety meds. I have even taken savella for 2 months without an ounce of relief. Lyrica, Tylenol, Advil, Aleve, etc do nothing either. Tramadol worked for about 2 months and then I started having muscle jerks so I discontinued use.
3. My thyroid, sugar and vitamin levels normal, and I tested negative for Lyme and Lupas. The anemia I had was gone too, with just a slight vitamin d deficiency which I am now taking a supplement for. I have read about the Lyme tests not always being accurate, but I never had a ring or noticed any bite marks.
I will definitely take your advice in searching for another md and getting my chart. Thank you for that. Yes, it is very frustrating. It has ruined my relationship with my md who I used to have a great deal of respect for. You mentioned you are on savella. Do you have fibro? Have you also had burning/painful feet and hands?
Thank you so much for your insight!
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