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My Doctor is Clueless - Please Help!
3 Replies
kelly bell - February 14

Hi,

After reading the symptoms on this forum I feel that I may have finally figured out what's wrong with me but my doctor seems to be clueless.

Last mid-September I started having really bad leg pains. It started in my knees (both at the same time) and the next day it moved to my lower back. The next day it was in my neck and shoulders. The pain was so bad that when my husband moved in the bed I would get upset at him for hurting me. After about three days the pain stayed in my thighs with the occasional sharp pain deep in my left thigh. I also had a pulled groin muscle that I don't remember hurting.

I get a lot of muscle twitching. My eyelids are terrible for this. A few years ago I had an eye twitch for 6 months straight. I also get them in my arms, nose and hands. More of an annoyance than anything.

I have a sharp pain in my lower chest, left of my sternum on my ribs. My doctor seemed convinced that it's my stomach. I'm not. My ribs feel bruised when i touch them. The pain comes and goes and I've had it for at least 10 years. When I was having the bad pain it was constant.

Right now my leg pains have subsided but the chest pain has come back. I read on here about allodynia. It sounds the same.

I get very sore patches of skin sometimes. Usually on one patch on one of my arms or legs or on my shoulder. It hurts to touch and to have clothes rub against it.

I get a very sharp pain behind my ears. Sharp enough to make me wince. I also have tinnitus and sometimes it gives me a deaf sensation in one ear and then it rings. It's in the same ear that I get constant infections and also have a perforation in (it squeaks when I blow my nose)

I have a runny nose and post-nasal drip all the time. You guys should buy stock in Kleenex because I'm driving it up!

I get TMJ symptoms every once in awhile and I am forever clenching my teeth to the point that they are loosening and wearing down. I got a bite guard from the dentist but it's too uncomfortable and I can't wear it in the daytime when I'm really clenching.

I don't sleep very well. (it's 4:30 am as I am typing this).

I had to quit my factory job because I physically couldn't take it anymore. I was having a hard time getting out of bed in the morning because I was stiff and sore.

My doctor put me in the hospital last September under the assumption that I was having stomach problems but I had a battery of tests that came up negative. I had a bone scan, xrays, ultrasounds and a million blood tests. I was tested for rheumatoid arthritis but that was on the borderline and the second test was negative.

The pain in my ribs has always been brushed off by doctors. One doctor told me that I don't have anything in that location that should hurt. I'm fed up and need answers. I keep getting depressed and don't leave the house much anymore.

I'm not in as much pain as last year but I fear that it's coming back because my rib pain isn't going away.

I'm sorry this is so freaking long but I'm desperate for some help for people who know what this is all about.

Thanks for reading and I appreciate any responses.

 

Fantod - February 24

I am so sorry to read about your discomfort which is obviously real. I can not fathom some doctors these days. Honestly, they should have sent you to someone else for another opinion. Please call your local hospital and get a referral to a rhuemotologist that treats fibromyalgia. I have a lot of the same symptoms - you are not alone. Allodynia has just started happening to me in the past six months. If I get a bruise, it is still sore months later. The hard thing with FMS is that it is subjective. No one really knows what kind of pain you are really feeling. Very easy for other people and doctors to be dismissive. As ill as you are, you have to be your own advocate for change and better care. Easier said than done when it is hard to even get out of bed. I would really encourage you to find a new doctor and a good rheumotologist in your area. Wishing you better days ahead and let us know how you are doing.

 

mtorg1 - February 28

It's real, make no mistake. I can't imagine anyone who would want to have this kind of pain if it wasn't. Stress makes it worse and pain causes stress which in turn causes more pain and the cycle continues. I had headaches as a child and my body hurt everywhere. My Mom apologized when I was diagnosed finally in 1995 at the age of 35. I have been on nortriptyline since then and it has saved my life. I thought I was dying. The ribs were huge with me too. I had to buy the perfect fit in bra to avoid the pain, but it is still there. But the stress and lack of sleep are the biggest enemies of this illness. One has to find ways to extreme destress their lives. Massage is wonderful. I strongly suggest it. Evening warm baths, for me hot, seem to relax my body to prepare for sleep. Uninterrupted sleep is essential to management. Hang in there. Due to horrible winter weather I am having a lot of pain this last year and with my one year old twins and lack of sleep it is growing worse, but as soon as we get through this it will improve. Find the right doctor. My doctor treats the whole person. I'm am very fortunate.
Mary

 

PEGGY - April 29

YOU ARE LIVING THE FIBRO LIFE. I SPENT 10 YEARS SEEING DOCTOR AFTER DOCTOR THEY WANT TO CALL IT DEPRESSION . I MADE MY OWN APPT. WITH A RHUMATOLOGIST ONE VISIT I LEFT THERE WITH A DIAGNOSIS FIBROMYALGIA. NOW I HAVE MEDS TO WARD OFF SEVERE ATTACKS. I THINK IT'S TIME TO SEEK OUT A RHUMATOLOGIST I.M SO RELIEVED TO KNOW WHY I'M LIKE I AM GOOD LUCK

 

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