New, Not Yet Diagnosed, and Slightly Concerned

Welcome Introductions
1

Hello everyone! I’m very excited to meet you all!

A little bit about myself: I have not been diagnosed with Fibromyalgia, though my Endocrinologist has referred me to see a Rheumatologist because he thinks I exhibit many of the symptoms. From what little I’ve researched FM, I would agree. The problem is, I am a huge push-through kind of girl. I have a high pain tolerance (and I’m young too, not yet 23 years old.) so sometimes I think I’m making things up and being a hypochondriac. I have good days and bad days, but I haven’t been without pain for a couple of years now.

It started as just joint pain, in my knees and hips, and then I began having chronic pain in my neck/shoulders area that will throb, and pound, and even burn, as if someone is taking a flame to the skin. Now I get a variety of pains, always in my back (upper and lower), and my legs. I also get these weird roving pains that pop up on my body and I feel like I’ve been stabbed, or electric shocked, or hit with a hammer, but they disappear in a minute or so and move to a new location. I’ll sometimes feel a topical pain, like I should have a giant bruise on my body, but I never hit it on anything and there’s never been a bruise from it. That said, the pain is very uncomfortable and can be distracting, but I’ve only had a handful of times where the pain has been so bad that I couldn’t get out of bed. Usually I just have to sit down a lot, or pace myself. I have a high pain tolerance, but it hasn’t been severe. I wonder if my pain is even bad enough to count as FM pain?

The fatigue is terrible. It’s the worst part of my symptoms right now. I never wake up feeling refreshed, and even when I’m exhausted, I have a very hard time falling asleep. I usually have to sleep at least 10 hours at night and take a nap the next day to keep going. It’s hard because I’m student teaching right now and can’t afford to be tired all day, everyday.

My muscles are stiff and I have a hard time walking after I’ve been laying or sitting down, especially if I’m in one position for a long period of time. I get frequent headaches, I have IBS, and I am super sensitive to temperatures (hot and cold). It takes me hours to warm up from a brief trip into cold weather. But, on the other hand, hot tubs, hot showers, and hot weather makes me uncomfortable in a way I can’t figure out how to verbalize.

I’m so sorry that this is long! I just needed to get all of this out here. I track my symptoms on an app, and I know I feel them, but the FM stories I hear are all very severe. I don’t have severe pain (at least, I don’t think I do) and I’m able to live a semi-normal life (most days, and with supports such as sitting down, frequent naps, etc.) so I like to tell myself it can’t be FM and I’m making it all up. Thank you to anyone who read this! I can’t wait to get to know you all!

1 Like
2

Keep the faith, Marvel-Lover. I’ve also not been diagnosed, but know I’m suffering similar ailments to many of the people here! Reading these comments, learning about others’ symptoms and treatments that work for some, gives me hope that my life can get back closer to my old life if I keep trying to figure this thing out…

3

Fibro doesn’t have to mean severe pain all the time. I am diagnosed (5 years now, but I’ve had it for nearly 15). I’m not in severe pain constantly (but I get it when things flare up). It’s simply NEVER absent. What I read here is very familiar! Don’t doubt yourself- no one who has felt these pains “makes it up”. A “push-through” mentality is very helpful when living with this condition. Best of luck in finding ways of managing that work for you. We’re on you side!

4

Many doctors at your age may not believe you, if this is the case, go someplace else. You want a physician that will treat you the way you need to be treated, that is understand you and what you are saying. I am an LPN and understand the implications of being young and understood, although I am in my 50’s I get it. I too have fibro but I am much older, that does not mean you do not have it too. Since you are young, what I would do is start charting on a daily basis your pain level 1-10, 10 being the worse ever! Also chart symptoms you are having on that day and any other information regarding this, just keep a journal of this on a DAILY basis so you will have something to show to the physicians that treat you or have issues with you being so young. I am here if you need any advice. I will help in any way, I have been fighting the disability case for several months and now am going to a hearing. Smile on your best days, on your worse, remember this too shall pass. If nothing else know that you are being heard right here! Many blessings and prayers to you.
Rose S.,
Madisonville, TN

5

Hi, it takes so long to be diagnosed with fibromyalgia. You literally have to be investigated for everything else, sent to several consultants, have a multitude of tests and be told “there’s nothing wrong with you” by same consultants for eventually one doctor to join the dots and decide, that it appears to be fibromyalgia. It’s seems off putting but really the official diagnosis doesn’t change anything and I was receiving the same treatment for “chronic pain” before I was officially diagnosed. I would take all the advice you can from other sufferers on forums like this… Fibromyalgia can feel different to lots of people. I go to a pain management group and people there with it have many different symptoms and experiences to me. I would still continue to see your doctors and get help with the pain and tiredness. Good luck!

6

Thank you everyone! I appreciate the level of support I’ve found! I’ve started charting my pain and symptoms on a chronic pain app that I found. It’s so easy and I can do it on my phone! So far, I’ve seen my PCP, who ran over 20 tests on me, before sending me to an Endo, who ran 5 or 6 tests on me. I’m not in a hurry to be diagnosed, I’m in a hurry to be told it’s not all in my head. My PCP is the worst offender of this, mostly with my stomach problems. I’ve started charting this too, and I’m going to see a different family doctor about these stomach symptoms since they’ve been interfering with my life for the past 5 years. Wish me luck! Thanks again for everything!

1 Like
7

Dear Rose I also have fibro and in my 50s. I am also a LPN and have to work night shifts in order to get through it. I don’t like twelves on nights, but my pain just won’t allow me to be able to work days. It’s been a depressing time as I have applied for disability and I couldn’t wait any .longer due to paying my bills. Thank you for your support. Any further advise from you would be greatly appreciated. God bless you. Theresa

8

What a delightful introduction to our community, Marvel-Lover! Your warm, good humoured and detailed story has really brought out the wonderful support that you can get from a community like this, don’t you think?

I’m Seenie, and I work in Moderator Support across the entire Ben’s Friends network. I don’t have fibro (although I do have a chronic disease that’s no doubt just as entertaining) and I’m not a doctor (nor do I play one on the internet), but I can tell you that this is not in your head. I remember so well going to a super-specialist in my disease, terrified, simply terrified of only one thing: being told that it was in my head. When he said that I had severe disease with a lot of damage, I burst into tears. Being told that it wasn’t in my head was an incredible relief. The disease I could deal with! The doctor, on the other hand thought I was upset about being severely ill, and he reassured me that they would help me and that I would feel better. They did, and I do! And so will you.

We do wish you luck here, Marvel-lover. Please stay in touch and and keep us in the loop!

Seenie from Moderator Support

9

Unfortunately I don’t think a normal life will ever happen again if you get diagnosed. Most of the time its not just fibro so keep researching and following the symptoms. The best you can do is stay as mobile as you can and keep pushing through. The medications only help numb things a bit. I wish you and everyone here the best. I like that we can share different remedies to at least try. It’s also good to know I am not alone and it’s not in my head. I now have people believe that it’s real and not just “in my head” which I’m sure most of us have all heard.
What app do you use to track your pain? Is be interested to see if it’s certain foods that make it worse or certain times of day or activities that make it worse.

10

Hi Kj34997!
Thank you for responding. I’ve known since about 2009 that I likely have fibromyalgia and/or chronic fatigue syndrome, but was misdiagnosed with ADHD and given many awful meds, and have gone to 4 or 5 other doctors who likely thought I’m crazy, so I’ve just been suffering through this. Fearing another incorrect diagnosis, I just didn’t pursue obtaining another diagnosis. I saw the documentary, “Unrest” recently on Netflix, and although I’m not in the serious category the movie depicted, I realized my original impression of FM or CFS was spot on; it finally clicked for me that I’m not going crazy and being lazy. This is a 180-degree turn for me because I’ve always been an extremely hardworking person. I just recently, within the past couple of weeks, finally got the determination to figure this thing out for myself! I’m thinking about just keeping a journal of my sleep, symptoms, food, stress situations, etc., unless you know of a better alternative. Thanks again, KJ.

11

Mstic37886, thank you for contacting me here on this site, this site is a wonderful place to communicate. I can tell you that at times I have wanted to go back to work, I love nursing but my body says different. I have had to take anti depression meds for all my depression. I have had that for years but now its worse. Have you tried taking Gabapentin? It helps, a nurse also told me to try taking Magnesium. She told me our muscles need that and many times we don’t get enough thru our diets. I have not tried that yet. I do believe that was the one she said to try. I am trying to hold out on going to work and it is hard paying bills, but some days I can barely walk. I hope you feel better, take it easy on your good days, I have a tendency to over do it on good days knowing the bad days are coming. Keep in touch and I will try to help you in any way I can. We all need to stick together and if nothing else have a place to talk about this. Many people don’t even understand this disease and that is hard to be able to get the support you need. I love this site for I can talk about how I feel and others truly understand. God bless you and I hope you feel better. Keep in touch! By the way, what state do you live? I am in Tennessee.

12

Dear Rose. Thank you for all your great info. I live in Iowa where it’s
very cold. We are considering moving to a warmer state and less humidity
for my joints ache with all the cold minus 45 degree days. I am off work
now but applying and interviewing again. Have you applied for social
security yet? Why does it take so long? I Love this site. It helps me too
know others have the same problems as myself. Thank you again and may God
bless you always. I hope your having a good day. Stay in touch and take
care of yourself. Theresa

13

Dear Mstic37996, I am so glad to meet you here and hope you are well today. Yesterday our weather here in TN near the smoky mountains was in the low 70’s so I went out and did a few things while I was feeling pretty good, so today I am in so much trouble with not being able to do anything, I hurt so horribly bad, my buttocks even hurt. Actually every bone, muscle in my body is screaming at me. But all in all, at least I had a good day yesterday. Best regards to you and hope all is good. Talk soon. Bye the way, moving this way will help, although we have some cold weather, I would love to meet you.

14

No prob. That’s why we are all here. There is not a lot of support out there for us, even family sometimes. Don’t give up on finding the right doc. It takes a while but once you find someone to believe in you it will change your life. After my primary care believed me she recommended an RA doc that is really good and he has been able to help a lot. If you haven’t gone that route yet, I would try it and see if it’s any better. Plus always research your docs online. Some will actually specialize in certain fields that are more likely to believe you. Good luck!

15

Thank you. I keep going back and forth on whether to or to not pursue a diagnosis! I’m tired of that blank stare doctors give you when they think you’re a nutcase (and I’m NOT a nutcase or a hypochondriac)…

16

No…you’re not. Remember that. Keep praying and focusing on positivity. I’ve tried meditation and it seems to help a little.

17

That’s a good point. I don’t meditate nearly as much as I used to. That’s a good incentive to get me back into a regular habit of meditating. I took a TM course so many years ago, that it was free; they charge you, now! I’ve used many techniques over the years. Anything in particular you’d recommend to help with aches and exhaustion?

18

I had an eastern medicine doc give me chi gong but for all my issues it hurt a bit, but I heard it helps. Other than that just normal meditation I googled online. I also listen to Christian music which gives positive messages so I know I’m not alone and follow certain people on Facebook. Jay shetty is great. Also gaur gopal das. It helps to get positive messages to keep the uplifting positive mentality.