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Unsure of Diagnosis
5 Replies
Marilyn - May 30

Greetings!

I am a newbie to this forum. I joined so that I could share some questions that I've had ever since I was diagnosed with Fibromyalgia 4 years ago. I guess I doubt the diagnosis since I lack one of the major symptoms that are required for the diagnosis.

I suffer severe chronic pain in my neck-shoulders-upper-mid-back. And I am never pain-free, ever, although I go through occasional periods of feeling pretty good (which gives me false hopes).

However, I do NOT have pain in my lower quadrants. Oh, I occasionally have aches in my hips, or pains in my legs (I do suspect RLS), but they're not chronic.

Do any FM sufferers in this forum have more localized chronic pain rather than the text-book over-all pains?

I do:
Suffer from fatigue (pain makes me very tired).
Have IBS, GERD.
Brain fog.
Headaches becoming more frequent.
Depression (though not all the time).
Muscular chest pain.
Have trouble maintaining yoga or exercise program; sometimes they seem to make things worse.
Use chiropractic care when I can. Massages also help; however, sometimes my body "rubberbands" quickly.
Sitting worsens the problems; I do best when I stand (less compression in my problems areas).

Thank you for your assistance.

 

tnichel - May 30

Keep in mind every fms patient will experience different symptoms. I like you did not have a lot of leg pain when I was diagnosed. However, I had terrible leg/foot pain as a kid/teen which was always attributed to growing pains. Most of my pain is in my neck, shoulders and back too. It makes my arms hurt.

All of your listed symptoms are fibro-related but could be symtomatic of something else. The majority of sufferers often have a immune condition. On average it takes 7 years to get diagnosed. Have you been tested for any other conidtions?

You'll have to ease up on exercising...nothing strenuous. Yoga is probably hard sometimes b/c you're in a flare but you can still do yoga. Water exercises are the best though. You don't really want to work out in a flare but exercise is important. Have you ever had an mri of your neck? You may benefit from physical or pain therapy. Use moist heat on your neck to ease some of the pain. You can buy an all over massage pillow to break up the knots in your neck and shoulders. I have a massage chair as well. Cheap patches from the dollar store helps me alot when I'm in a flare. Alot of your mentioned symptoms are talked about in this site. Take a good look at the info. You may have already known a lot of this but I hope it helps.

 

kentucky girl - May 31

Welcome Marilyn. I am also fairly new to the forum. I have found this site to be very helpful with good information provided on this site, as well as the advice of the members.

Everyone seems to suffer differently. You mentioned in your post that you doubt your diagnosis because you lack one of the symptoms. That's not uncommon. I, like a lot of fibromites have pain all over, while others experience pain in only a few of the trigger points. In addition to the all over pain, I have IBS, muscle spasms not only in my back and legs, but spasms of the esophagus, which my doctor links to the IBS. I also suffer from fatigue in varying degrees from mild to profound while I'm in a flare.

The most important thing is to educate yourself on fibromyalgia and the related conditions associated with it. The second most important thing is to find a doctor with whom you are comfortable and with whom you have a good repoir. There is not a "one size fits all" solution. That is something that you and your doctor will have to develop, most times through trial and error. I find that massage helps me, and I get a massage at least once a month. Make sure you take a good vitamin supplement and keep a check on your vitamin D levels.

You didn't mention whether you have sleep problems. It is very important to address any sleep problems as this will contribute to your overall symptoms, (pain and fatigue) which can trigger the depression.

Just remember, fibromyalgia is a chronic pain condition. There is no cure, so you need to find what works best for you.

Good luck and remember that we here on the forum can't cure you, but we can support you.

Kentucky girl

 

Marilyn - May 31

Thank you for your responses.

My condition (symptoms) started to raise its ugly head shortly after cardiac bypass at age 43! I'm 58 now. I've read before that the trauma can trigger FM. Plus, my gut-doctor believes that the surgery damaged my stomach valve; thus, the GERD.

Quite frankly, sometimes I can't tell if some flare-ups are triggered by the muscles or the GERD. They seem to go hand-in-hand. The worst thing to cause flare-ups for me, is stress.

IBS, I've always blamed on too many meds.

I did have an mri of my neck several years ago and it showed "early signs" of arthritis. But I think most people in their 50's have "early signs" of that, anyway, so I didn't put a lot of stock into finding. But I would like one done of my back.

My favorite relief is so soak in a hot bath and read. Hot water is my best bud. Unfortunately, I can't stay immersed in water all day.

I do own a massage chair. It doesn't do much for my neck but it's great otherwise.

Sleeping. I sleep hard but not necessarily well. Menopause is the culprit. I stir awake once or twice a night but roll right back to sleep. And it doesn't matter how much sleep I get, it almost takes a crane to yank me out of the bed. Sometimes I arise feeling better; other times worse.

I do think some of my ills are occupational, though. I've been a receptionist for 23 years, and sitting literally makes the neck pain worse (compression). But there's not much I can do for it. I'm not many years from retirement.

Well, okay, then. Sounds like I may very well have been diagnosed properly (although my doc was quite hasty with that conclusion). I shall spend a lot of time perusing more info on this site.

FM ain't for sissies, that's for sure.

Thanks again.

 

kentucky girl - May 31

Marilyn:

The more you know about fibromyalgia, the more you realize all those other pains can all be associated with the fibro. Educate yourself!!
I'm not a complainer, especially to non fibromites as they dont have a clue about what kind of pain you're in.

And you're right. Fibro ain't for sissies!!
Kentucky girl

 

lucky13 - June 4

If you doubt your diagnosis, then may I ask what type of Dr diagnosised you and did they do the tender points test with at least 11 or the 18 points causing you pain or discomfort?
In most cases the most qualified Dr to diagnosis Fibro is a rheumatologist, they have the extra training in Fibro and other problems like arthritis that could be mistaken for Fibro.
Before I was diagnosised my rheumatologist did blood work and x-rays to rule out any other possible problems like RA, lupus or other things, then he performed the tender points test and I had problems in more then 11 of the 18 points, so with that, my symptoms and the elimanation of the other possible illnesses I was diagnosised with Fibro.
As far as the wide spread pain, it doesn't have to be equal to the other areas, just present. My upper half gives me more problems then my lower half, but I do still have pain in my legs.

I would suggest you just continue to do your research and learn everything you can on fibro, it could help you learn to cope with it or verify your diagnosis so you have peace of mind, if it is an incorrect diagnosises then your researech could help you realize that as well.
Good Luck

 

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