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Does this sound like fibro to you?

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Fibromyalgia
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Posted 4/17/2017 9:46 PM (GMT 0)
I'm a 20 year old female. When I was around 11 I started suffering from pain in my knees. It was a constant aching pain that was exacerbated by a knee injury, at which point I sought physiotherapy. Around the same time I started experiencing very severe muscle tightness and pain in my back, shoulders, and neck. I went to massage therapy for over a year for this, and I remember my therapist telling me that it was very abnormal for someone so young to have so much tenderness and tightness in their their upper body. No matter how much I went the pain came back, so I eventually stopped going because it was costing my parents a lot of money with minimal results.

Over the years the pain just sort of spread. My back/neck/shoulders ache constantly and are extremely sensitive to pressure (wearing any sort of purse, or sometimes even just a heavy coat can cause a large increase in pain for days). My hips, knees, and elbows ache pretty constantly. I also have extreme sensitivity in my torso, particularly my sides and stomach, where any sort of pressure cause radiating pain as if I've been hit very hard.

I recently started looking into fibro, and I have a large amount of symptoms: depression, anxiety, fibro fog, most of the tender points, painful menstral cramps, headaches, morning stiffness, insomnia and fatigue.

However, I've never considered my pain to be dehabilitating. I have a high pain tolerance, so this might be part of it, but I've always managed to function despite the aching. I don't have stabbing or burning pain the way some people with fibro describe it, it's just a constant deep body ache. While I would say that my pain affects my lifestyle (I can't carry a purse ever, I have difficulty falling asleep due to it, I can't tolerate any touching of my sides/stomach, etc.) I don't know if it's really bad enough to get a fibro diagnosis. Additionally, the tender points are certainly tender, but not so much that I exclaim in pain when they're pressed on, and they're not tender to brush against, just when there's pressure.

So my question is really: how much pain do you have with fibromyalgia, and do you think it sounds like I have it despite it just being aching and not preventing me from working/functioning?

Post Edited (Justjulia) : 4/17/2017 4:04:24 PM (GMT-6)

Posted 4/17/2017 10:37 PM (GMT 0)
Welcome Julia! You just described my life with fibro. My pains started before I was 10 and I was diagnosed about 9 years ago. I'm 71 now. I wondered about fibro for years but thought I was not sore enough to have it. Severe flare ups became more frequent though after some lifestyle changes and I finally talked to my doctor. I had almost all pressure points positive. Don't know if they still use them to diagnose fibro now.

I always knew that as long as I stayed pretty active and stretched I felt better. For me exercise has been the best medicine.

This forum has been very helpful for me. If you haven't already be sure to read Fibro 101. I'm sure others will come along and give you their thoughts.
Posted 4/18/2017 12:40 PM (GMT 0)
Hi, Julia, and welcome! If you've had pain in all four quadrants of your body for three or more months, that is a hallmark of fibromyalgia. Then add the fibro fog and that does sound a lot like fibro. I do suggest you see a board certified rheumatologist to find out for sure. Be sure to ask if they treat fibro patients because there are some doctors out there in the Dark Ages when it comes to this illness.

The reason I stress that you see a good doctor is because many of our symptoms are symptoms of other illnesses too...illnesses like lupus and Lyme disease. These other illnesses have a different treatment than what they do for fibro. There is no good test for fibro but there are tests for these other illnesses so the doctor hopefully would rule out these other illnesses before giving a diagnosis of fibromyalgia. If a doctor slaps the fibro diagnosis on you without ruling out other illnesses, see a different doctor.

I have lived a pretty normal life in spite of Fibro. I raised three children and also worked part time for a while. We do have people that work full time. But we do pace ourselves when doing things. I didn't pace myself this past weekend and I'm paying the price for it...excess pain. I know this flare will leave soon though. I know what works for me to control the pain.

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.

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 4/18/2017 2:55 PM (GMT 0)
Thank you all of you for sharing your thoughts!

Puppylover - I really appreciate you telling me your story and what treatment works best for you. Currently I don't exercise very much at all, as I get sore and annoyed doing so, but I've been reading up on hoq aerobic exercise can be helpful and I hope to start doing that soon regardless of my diagnosis.

Rockon - Wow. It kinda hit me while reading your reply that you're right, I do just think of my pain as normal because it's my baseline. Particularly, I always downplay how much purses hurt because I know people think I'm being dramatic and I know that everyone else manages to carry them just fine, so I've always kind of thought that I'm just choosing to not wear them. When I was making this post yesterday though, I realized that it's not much of a choice, because if I wear one I'll pay for it for at least the rest of the day. Thank you for reaffirming that that type of pain is abnormal, I think I really needed to hear that.

As for EDS-h and arthritis, I will definitely look into both. I'm going to see my doctor late next week, so hopefully she'll be able to refer me to someone with more specialization who can run some tests and rule out differential diagnoses (or rule them in, I suppose).

Rockon - Thank you for the recommendation. I looked it up, but my pain is located more in my stomach and side area than anywhere on my chest, so I'm not sure, althought the description of a too tight bathing suit is accurate for describing pain higher in my ribs if someone presses or hits them. I'll ask my doctor about it smile

Sherrine - I appreciate the medical advice! I am a bit concerned that my doctor might not believe me about my pain, or recognize fibromyalgia as a real thing :/ I saw her many times about my shoulder and back pain and the only response she had was that some people just have naturally tense muscles, which discouraged me from looking into any sort of relief for years. I hope she will just refer me to a rheumatologist and that I can then look around for one who treats fibro, although like you said, I agree it would be bad if they just told me I had fibro without any other tests.

Thank you as well for the insight into your life. I believe pacing yourself is the best way to describe my life too, and I also read up on the Spoons theory for what living with lupus is like and I find it pretty applicable to how I live my life currently. I often feel like I need to be thinking several steps ahead to figure out what my body can handle that day, and if I'm not careful I wind up having no energy and so much pain that I can't do tasks that need to be done at the end of the day, like schoolwork or chores.

Again, I appreciate everyone who gave me a response, it was really helpful! Thank you smile
Posted 4/19/2017 2:50 AM (GMT 0)
Hi and welcome,

I have a genetic form of fibromyalgia and have had it in different levels since I was a child..

It was worse in my 30's and I was not being treated much for it at that time, which actually forced me to study and find many self help measures through alternative medicine.

Purses hurt me too , as well as rib pain..

Just remember, whatever is going on ..your dr can help some and you can also learn to help yourself..you can get help and feel better..

It's empowering to know you can improve..and even in a bad flare..I know I will get better, and I fight to stay as strong as I can..

However, please be very careful as you try to exercise more..you can do it , but many of us need to ease into it slowly...it's frustrating but better for the long haul.

Lj
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