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Does this sound like fibromyalgia? PLEASE HELP!

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Posted 9/8/2015 1:04 AM (GMT 0)
Hi everyone. I have had numerous symptoms, some that I've had for 6 years and others that have just developed over the past few months. When I was a teenager, I had Generalized Anxiety Disorder and experienced panic attacks. I do not have anxiety anymore though and don't think the following symptoms are due to anxiety.

In 2009, I was diagnosed with GERD and eosinophilic esophagitis. In the summer of 2014, I developed severe abdominal pain so I had a CT performed. It was normal, except I had a lot of stool throughout my colon; therefore, my GI doctor diagnosed me with IBS-C. At the end of the summer in 2014, I developed daily headaches. These lasted for a few months, so I saw a neurologist and had an MRI performed. The MRI showed non-specific findings and the neurologist concluded I had migraines. After treating the migraines, I started waking up out of sleep with my heart racing and feeling like I was going to faint. These episodes started in January of 2015 and lasted for a few months, before I saw my cardiologist. My heart is structurally normal and a 30-Day event monitor only showed one brief episode of SVT and numerous episodes of regular tachycardia and PACs. Also, I have been very fatigued for the past 4 to 5 months and have experienced chronic middle back pain for the same amount of time. (I do have moderate scoliosis, which was discovered during my CT last summer). I have difficulty sleeping, but I always have. I stay up very late, but this summer has been really bad. I don't feel like I'm getting sleep and I keep waking up throughout the night. Also, I have had costochondritis for years which comes and goes. It has gotten worse this summer. I do NOT have pain in my arms and legs, except once in a while and it's usually not severe. My blood work has all been normal, except I have low vitamin D levels and am on the lower side of normal for my ferritin level. Also, my potassium levels have been lower than normal but not life-threateningly low. I've never had a CRP, ANA, or any other blood test to check for inflammatory conditions or rheumatological conditions. My sister was diagnosed with fibro 3 years ago and also has IBS, RLS, and night terrors. Apparently, my paternal grandmother had fibro and my maternal aunt had fibro. I have never mentioned this to any of my doctors, but they have never mentioned fibro. What do you think? I greatly appreciate any feedback!

*Tests I have had that have been negative or non-specific: Abdominal/ pelvic CT, head MRI, abdominal/pelvic ultrasound, numerous chest X-Rays.
Posted 9/8/2015 1:46 AM (GMT 0)
Hello there,
Doctors are best to diagnose and fibro is not genetic disorder.Try to get ANA and CRP done as they help docs diagnose you better.

Fibro is extremely common and difficult to diagnose,sounds like you might have it.
But I am not a doc or a nurse so pls try to talk to a pain specialist if you can.
Good luck ..
Posted 9/8/2015 1:51 AM (GMT 0)
Hi Cilly,

Thank you for your response. I know fibro is not a genetic disorder, but I have read that you're much more likely to have it if someone else in your family does. However, it doesn't mean I have fibro. I will be seeing my internist and GI this week, so I will bring up the CRP and ANA. I know everything has to be ruled out before being diagnosed with fibro. If you don't mind answering, but did you end up undergoing many tests before being diagnosed with fibro? Thank you.
Posted 9/8/2015 1:52 AM (GMT 0)
As people age they tend to lose the feeling of anxious fear and the nervous exhibits it's deregulation as physical symptoms.

The diagnostic charts show over 150 anxiety symptoms that are physical not mental

All of your symptoms are on the charts

Before fibro had the present name it was called anxiety tension state or stress myofacial pain syndrome

From 1829 until the early 1900's it was called Neurasthenia
Posted 9/8/2015 1:54 AM (GMT 0)
AndreM,

Thanks for your response. So, are you saying that you think fibromyalgia is just really an anxiety disorder? I know that anxiety is common in people with fibro and I do have a history of anxiety; however, I just don't FEEL anxious anymore. I know anxiety can cause physical symptoms though.
Posted 9/8/2015 1:54 AM (GMT 0)
These are some of the more common anxiety symptoms. This symptoms list is not exhaustive.

References and Resources

National Institute of Mental Health - general information

Canadian Mental Health Association - general information

American Psychiatric Association - general disorder information

I deleted this extremely long list. It was not only against forum rules, but also this is the Fibro forum...not the anxiety forum. Members can go to our anxiety forum if they need help in this area.

Sherrine

Post Edited By Moderator (Sherrine) : 9/8/2015 6:39:20 AM (GMT-6)

Posted 9/8/2015 2:31 AM (GMT 0)
That is an extremely extensive list, but yes, anxiety can manifest in many different ways. Like I said, I do have a history of anxiety. However, I truly do not believe that my symptoms are due to anxiety or if they are, they are not completely due to anxiety. I think that physical causes of these symptoms need to be ruled out first, and then psychological or idiopathic causes can be considered.
Posted 9/8/2015 3:07 AM (GMT 0)
There can definitely be a genetic link with fibromyalgia.. There are believed to be 5 to 7 origins and one of them is genetic.

My mom and an older sister had fibro , as well as my youngest daughter. My sisters fibro presents differently than my own.

I have read that genetically you have the posibility of fibro, but something happens to activate it, as in a virus etc..

There is research now ongoing to see if a latant virus stays at the nerve level. Also there is some belief that we have neuro inflammation , rather than an inflammation that shows in the bloodwork. For me personally i cannot function without anti-inflammatory . Others with fibro do not respond to anti inflammatories, which seems like different origins to me.

The sleep issues also point towards fibro, but other things should be ruled out. I would ask for the bloodwork to rule out other inflammatory issues, if it were me.

Good luck in your journey towards better health.
Posted 9/8/2015 3:45 AM (GMT 0)
Hello, Slee, and another welcome! Sorry you've been going through all this. Did you take a look at our first thread, "Fibro 101"? It's a very helpful resource. You might just see yourself there.

My own experience is that I was diagnosed with Fibro 25 years ago....I had had many disparate symptoms, (no anxiety) and routine tests, which all came back normal. I just happened to finally find a doctor who was more interested in helping me than in telling me I was a hypochondriac.

Andre, I have to say - there's really no need to write out such a long, exhaustive list of anxiety symptoms! The links or list of websites would have sufficed. After a certain point, the list becomes meaningless and the question becomes: are there any symptoms that COULDN'T fall under the heading of anxiety?!

Debbie
Posted 9/8/2015 10:12 AM (GMT 0)
It's nice to meet you, Slee. When I think of anxiety I think of stressors to the body.

If you're not doing so, try eating healthy and see if that makes a difference. Various foods cause my symptoms to become worse.

Try gentle stretches and exercises a few times a day.

Try to avoid pollutants like outdoor pollution and indoors--cigarette smoke.

I hope your doctor visits go well.
Posted 9/8/2015 10:17 AM (GMT 0)
Ljm2014- Thank you for your input. I have heard that some research has shown that fibromyalgia may be caused by neurons that are misfiring; however, I wonder if there are several causes that are still unknown. Hopefully in the near future, the medical community will have some answers regarding fibro!
Posted 9/8/2015 10:23 AM (GMT 0)
Acheybody- Thank you for your reply! I have now looked through the Fibro101 post. Out of the 50 symptoms listed, I checked off 23. However, I know that those symptoms can occur in numerous other conditions. I do understand the feeling of being labeled or thought of as a hypochondriac; it is very frustrating. I had to switch to a new PCP after my old one of 6 years thought all my symptoms were caused by anxiety. Luckily, I have a very good gastroenterologist and I'm hoping he will be able to help me through this. My new internist seems to be good so far, as well! Lastly, I do agree that almost any symptom can fall under the label of anxiety!
Posted 9/8/2015 10:28 AM (GMT 0)
almost medfree- Thank you for your response! I have actually been eating healthier this summer, but my symptoms have gotten worse over the summer. I increased my fruit and veggie intake (I was already a vegetarian) and have tried to drink prune juice & more water everyday. Unfortunately, I haven't been able to exercise for about a year due to my symptoms. I have gained about 15 to 20 pounds during that time because of inactivity. I know it's important, but I really haven't been able to. Do you have any advice or tips on starting an exercise regimen for those who are chronically fatigued and experiencing pain? As far as pollution goes, I live in a very clean area away from large cities. I don't smoke and there's no smoking in my house. Thanks again!
Posted 9/8/2015 10:40 AM (GMT 0)
Thanks, slee17, for replying so quickly. I'm very glad you live in a clean area.

Advice for exercising, I try not to overdo, this only makes me feel worse. So I take short walks a couple times a day and try to stay active around the house. Also try to walk in nature--it makes the efforts much more pleasurable. I especially enjoy walking near the water. It's good for us in a variety of ways.

Slee, watch your juice intake. I heard we should drink only one glass of juice a day due to the sugar content. The remainder of the day I drink water-- a good amount of it.

Make sure you're eating enough fiber, that's important too.
Posted 9/8/2015 10:48 AM (GMT 0)
almost medfree- Thank you for your quick response, as well! I will try to get out of the house and start walking for 20 minutes or so and try to increase my endurance. I only drink a 5.5 oz. or 8 oz. glass of prune juice a day or every couple days. I drink it for the potassium and because I suffer from severe chronic constipation; the prune juice doesn't seem to help with that, but at least it's giving me some potassium! I notice in your description that you have scoliosis. Have you had it all of your life? I am 24y/o and just found out last summer, which I thought was strange as most people find out when they're children. I've wondered if my back pain is related, but the information I have looked at says scoliosis shouldn't cause pain.
Posted 9/8/2015 11:21 AM (GMT 0)
Hi Slee, I take a good natural supplement to get my potassium and I try to eat foods that will help give me my daily vitamins and minerals.

Sorry to hear you have chronic constipation. I really have to watch how much fiber I eat or I get it too. If I don't drink enough water during the day, I'll have constipation too.

Scoliosis, it may contribute to my pain but I also have a few spinal injuries that cause me pain. I've seen chiropractors off and on over the years, what's helping me the most right now is a cranial fascial massage therapist. She's even helping my tightness and she also helps my overall pain.
Posted 9/8/2015 12:15 PM (GMT 0)
Hi, Slee, and welcome! You have gotten excellent advice from our members as usual. I will suggest that you start taking vitamin D3 since you are low in that. Did your doctor suggest that? Being deficient in vitamin D can cause more pain and fatigue. There is a link in Fibro 101 all about it and how it works in the body. I live in sunny Florida but still was deficient in it so I take 5,500 IU a day of vitamin D3... and this includes the D in my calcium supplements and multiple vitamin.

Yes, they are thinking there is a genetic connection for some of us. I have two cousins with Fibro also. Many members have other family members with Fibro.

I'm glad you are going to start walking. I walk at least a half and hour a day. I don't fel like heading out but once I'm walking and seeing the beauty all around me, I feel better and come home with less pain and fatigue. It is important to keep moving with Fibro and walking is an excellent gentle exercise.

I also have scoliosis but it didn't cause me pain when I was younger. In the past couple of years I discovered I have something called ankylosing spondylitis. It is kind of like arthritis of the spine. If you are having extreme back pain you should see a rheumatologist and be checked out. They also can diagnose fibromyalgia. Just make sure they treat Fibro patients. There are still some doctors out there in the Dark Ages who don't believe this is an illness. UGH!

We are all so different as to how Fibro hits us and what works for us. It is not a one size fits all illness so everything is trial and error. To be diagnosed with Fibro you need to have pain in all four quadrants of the body. We usually have fatigue and cognitive memory problems which we call Fibro fog. Since many of our symptoms are similar to other illnesses like lupus and Lyme disease, it's difficult to get a diagnosis. These other illnesses need to be ruled out first since there is no diagnostic test for Fibro.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer for my Fibro. I also walk daily, pace myself, do trigger point therapy on myself when needed, and I get gentle massages once a month. Fibro is not considered an inflammatory illness according to the National Institutes of Health but I do have a lot of inflammation due to other illnesses that I have so it makes it difficult as to knowing what is causing certain pain. That's why I really suggest you see a good board certified rheumatologist and get to the bottom of what is going on with you. Once you do that you can stop the searching, which can drive you crazy turn, and start living your life. I have a positive attitude and that has helped me immensely with this illness and I've had a full and enjoyable life in spite of Fibro. I don't limit myself as to what I do. I always try to do things and most of the time I am successful. I'm on vacation and today I'll be walking through the Museum of Natural History in Cleveland. I don't really feel like going but know I'll have a great time. This is how I approach things and have surprised myself many times as to how well my body co-operated. :-)

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 9/8/2015 12:38 PM (GMT 0)
Andre, I agree with Debbie. I deleted your extremely long list, which is against forum rules. It's obvious you copy and pasted these lists because of all the repetitions in it. Also, if a member didn't have anxiety before reading it, they would when they finished reading it. Yikes! Gas and burping is a sign of anxiety? I get that if I eat beans. turn

This is the fibromyalgia forum. We do have a wonderful anxiety forum for our members who feel they need to see if they have anxiety. Most of us can tell if we are anxious.

Thanks, in advance, for your understanding.

Sherrine
Posted 9/8/2015 6:16 PM (GMT 0)
slee.......I haven't read all the responses here, but I'm wondering.......are you of menopausal age? I had all those symptoms surface/worsen during perimenopause.
Posted 9/8/2015 9:46 PM (GMT 0)

slee17 said...
Hi Cilly,

Thank you for your response. I know fibro is not a genetic disorder, but I have read that you're much more likely to have it if someone else in your family does. However, it doesn't mean I have fibro. I will be seeing my internist and GI this week, so I will bring up the CRP and ANA. I know everything has to be ruled out before being diagnosed with fibro. If you don't mind answering, but did you end up undergoing many tests before being diagnosed with fibro? Thank you.

.

No problem at all,I was diagnosed and still being diagnosed more and more issues every year,which is frustrating for me as well as docs.

For me stress physical or emotional makes me flare up.
cognitive issues are immense ....and ANA and CRP tests opened my eyes as they were 50 thousand times the normal limit.
Depression,fibro,anxiety ...all I have but try to manage with diet and keeping stress at bay...which is immensely difficult.
I would love to write here if you have questions..... yeah
Posted 9/8/2015 10:38 PM (GMT 0)
Slee17,

Exercise is a sticky thing with chronic pain..if we do too much we feel worse and if we do not exercise we feel worse..

So if you have not been exercising, you may want to start slowly and gradually work up...
I do gentle stretching almost every day..just because it loosens me up and makes me feel better..i just bought an indoor bike , our winters have been so bad..i am starting out with it very slowly..just doing it in small amounts has already made me feel stronger.

Also, my d was very low last year which caused weakness, greatly increased pain , and some levels of confusion..all of these improved by getting my d back in the normal range..so just be sure they are taking care of that..in nice weather you can get approx. 15,000 to 25,000 units of vit d in 20 to 30 minutes in the sunshine, but you do not get it if you are covered in sunscreen..so its a balancing act , not to burn and yet get the sun your body needs.

This is a great forum , so many nice folks

Lj
Posted 9/8/2015 10:54 PM (GMT 0)
Hi Sherrine, thank you for your response! I appreciate all of your input and advice. I know that I really need to start taking Vitamin D supplements; my doctors have suggested that I take them. I'm really bad at taking medications and vitamins (unless I HAVE to take them), but I should really start doing so everyday. I know that vitamin D deficiency can cause fatigue, muscle pain, and numerous other symptoms. I would be surprised if all of my symptoms were due to a vitamin D deficiency, but I suppose it is possible. I will do my best to take it everyday :)

In my CT report from last summer, it said I have moderate levoscoliosis and mild spondylosis. I know that spondylosis is generally a normal finding, especially as we age; however, I'm only 24 so I thought that was a little strange. Maybe I should see a rheumatologist and talk to him/her about my back pain. Have you ever seen an orthopedist for your back problems?

As far as the fibro symptoms go, I don't seem to have pain in all four quadrants. I have back pain, headaches, and abdominal pain. I don't seem to have pain in my legs or arms, except once in a while. I'm really not sure if I have fibro, but I do seem to have numerous other symptoms of the condition. I have a fairly extensive vocabulary and sometimes I struggle to find the right word or it takes me longer to think of the correct word in a situation. Also, I seem to forget things. However, I know that this could just be due to fatigue or even vitamin D deficiency.

I never take OTC pain meds, even though sometimes I wish I could take Ibuprofen. I have GERD and stomach problems, so I'm not supposed to take it. I was prescribed Prednisone for my costochondritis this summer, but I refused to take it due to the huge side effect profile. However, my dad had to take a course of it this summer and he seemed to do fine on it. It's just so different for everyone!

It does sound like you have a good attitude. Hopefully I will be able to stay positive, even when I'm feeling really bad. It is hard sometimes though. Also, I hope you had fun at the museum today!
Posted 9/8/2015 10:59 PM (GMT 0)
CathyA- I am not of menopausal age. I'm 24 y/o. My symptoms have seemed to get much worse over the summer, but I just haven't felt right for about one year.
Posted 9/8/2015 11:02 PM (GMT 0)
cilly- I'm seeing my internist tomorrow and will definitely ask about getting a CRP, ANA, and possible an ESR. I think I may have had my ESR tested years ago, when I first started having costochondritis. I think it was elevated, but not greatly elevated. Nothing was ever pursued. Managing stress and maintaining a healthy diet is important, but I agree that it can be really hard! Thank you for your help and I will make sure to post with any news.
Posted 9/8/2015 11:08 PM (GMT 0)

Ljm2014 said...
Slee17,

Exercise is a sticky thing with chronic pain..if we do too much we feel worse and if we do not exercise we feel worse..

So if you have not been exercising, you may want to start slowly and gradually work up...
I do gentle stretching almost every day..just because it loosens me up and makes me feel better..i just bought an indoor bike , our winters have been so bad..i am starting out with it very slowly..just doing it in small amounts has already made me feel stronger.

Also, my d was very low last year which caused weakness, greatly increased pain , and some levels of confusion..all of these improved by getting my d back in the normal range..so just be sure they are taking care of that..in nice weather you can get approx. 15,000 to 25,000 units of vit d in 20 to 30 minutes in the sunshine, but you do not get it if you are covered in sunscreen..so its a balancing act , not to burn and yet get the sun your body needs.

This is a great forum , so many nice folks

Lj

It is hard for me to get vitamin D through sunshine. If I don't wear sunscreen, I will probably burn and it's always pretty bad. It's strange, I have always joked that I'm allergic to the sun because it seems like I get more of a rash than a sunburn! Anyway, I will start taking my vitamin D supplements. Also, I am going to try to slowly get back in to exercising. Thank you again for your comments!
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