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Symptoms/Diagnosis Help?


#1

Hello Everyone!

May 26 (I can remember the day!) my journey with chronic pain and exhaustion started. It started off with just a throbbing pain under my right underarm. Over the next week it got worse. I started to feel the pain in my left underarm as well. Additionally, the pain began to migrate to the area of my ribs beneath my underarms and the across my collarbone, up my neck and by my jaw bone below my ears! I also started to get extremely exhausted. I also started to have breast pain and pain in my groin area, where my leg joint is. The pain is usually in very specific places that alternate in the aforementioned areas. It doesn’t really feel like typical muscle pain. I have had a feeling of swelling up my neck and across my chest and tenderness and burning across my chest as well. I have had back pain as well in the middle of my back near my spine, but having had back pain before I’m not sure if it is related.
Just last week I started to get head and facial tingling and numbness, floaters in my field of vision and a feeling of unsteadiness when I walk at times.

I have also started to suffer from anxiety and depression. I worry all of the time about my health and I have broken down in tears (even in public) at times.

By the second visit to my doctor he had decided I had fibromyalgia, but I’m not sure my symptoms fit the criteria?

I have had a chest x-ray and I am scheduled for a breast ultrasound and mammogram (I had a manual exam with no lumps found.) I had to press my doctor to give me any sort of imaging at all. He doesn’t think an MRI would be necessary, but I don’t think I agree with this. He has already sent in a referral to a pain management clinic that specializes in fibro treatment.

I was wondering if anyone could help.

  1. Do my symptoms sound like fibromyalgia to you?

  2. What sort of imaging did you have before you were diagnosed with fibro?

I think it’s possible I have fibromyalgia, I just want to exclude other possibilities to allay my fears before accepting the diagnosis.

I would really appreciate any answers or advice!

Thank you :slight_smile:


#2

I forgot to add that I’ve also had trouble breathing. It feels like I am constricted and cannot get enough oxygen no matter how deep I breathe! I have also had bouts of extreme itchiness with no rash and petechiae. All blood work (I’ve had a lot done) has come back normal.


#3

Hi, sorry you are going thru all this pain and worry. MRI’s, CT scans wont help diagnose fibro. If something else is going on then thise studies might help. Fibro is usually tested with the usual points on your body that your dr will palpate and ask if those areas hurt, Inflammation markers may be elevated.And by the symptoms you tell your dr you are having. Everyone with fibro will tell you that symptoms vary from person to person. My sister & I both have fibro and how she feels is different from how i feel. You may also feel great one day & miserable the next. I think its good that your dr is giving you that referral right away, it took me years to finally get my diagnosis & i had to ask my dr to send me to a rheumatologist. Other drs just kept insisting i was just depressed & thats why i was feeling the way i was. I researched fibro and there are so many symptoms we can have at different stages. I was treated for rheumatoid arthritis prior to my fibro diagnosis. Idk if my reply helps you but i will keep you in my prayers and i suggest read alot about fibro but remember we are all different. Good luck & God bless you on this journey…


#4

Hi Andrea,

I really appreciate you taking the time to respond. That is very sweet of you to say you will keep me in your prayers. Thank you so much :slight_smile:

Did your dr send you for any imaging to rule out other ailments before diagnosing you with fibro?

I guess my concern is that apart from a chest x ray in the ER (I had had a chronic cough for 6 weeks or more) and my upcoming breast diagnostics, he’s refusing an MRI for my head (vision issues, facial numbness) and the area of pain (neck, chest).

I guess the other thing I’m struggling with is being in pain every day for almost two months. There isn’t a day that I wake up and I’m not in pain…

It is all exhausting and awful!

Thanks again for your kind words and time,

Colleen


#5

Hi Colleen,
Yes! OMG! My PCP took so much blood and tested me for everything and so did rheum doc. I had xrays on my hands, hips and knees and it showed osteoarthritis.
All i can say is be persistent. I know it sucks. Being in pain all the time and your doc not listening to you. Have you asked him why he won’t have you get an MRI? Have you seen a ophthalmologist? Maybe the dr can suggest a MRI.
I had been in pain for a very long time and 2 family docs couldn’t diagnose me. Fibro is one of those chronic invisible illnesses that ppl find hard to understand. If you dont think your doctor is listening to you and addressing your concerns then maybe you should consider finding another doctor.
Im sorry you are going through this,
You are in the best support group site to listen, give suggestions and for when you need a shoulder. Everyone here has had their ups and downs when it comes to being diagnosed to finding a good dr for treatment. On here you can read other ppls stories and what worked & what didnt. Just dont give up we are here for you.


#6

Hi Andrea,

I have another appointment with my doctor Monday and am hoping to convince him to send me for some sort of imaging on the areas I’m feeling pain.

That is a good point. I think if he declines again I will try to find another doctor.

The optometrist said everything seemed find with my eyes, so that’s good.

I really appreciate you taking the time to respond to me. I’m really glad support groups like this exist :slight_smile:


#7

Hi, I actually decided to ask my pcp for a referral to see another rheum dr. The one i have now is ok. But she talks too fast and only knows about my pain. She doesnt give me time to talk about my other symptoms. Like she doesnt know my hands spasm or the tingling i get in my feet and hands or how i can sleep 9 hrs and wake up super exhausted. She is in and out of the room in less than 10 min. And thats only bc she gets on the computer to reorder my meds. I am told the new dr is very caring & nurturing type. And that she takes her time with patients and listens to their concerns. And thats what i like and need.
Good luck on your next appointment. :blush:


#8

I was diagnosed with rheumatoid arthritis before my diagnosis of fibro and now 3 rheumatologists later they have decided I don’t have RA just carry markers for it, I wonder if this is related to the fibro?


#9

Hi, I was diagnosed with RA first too. I took a whole lot of medications plus injected myself weekly with methotrexate. And then this year my rheum tells me I dont have rheumatoid arthritis she says its fibro. So now i take a whole other medication regime. Honestly what i was taking for rheumatoid arthritis helped more with pain than what i am on now. I know fibro is hard to diagnose but i wonder if its even harder bc some providers are not hearing what patients are saying. When i got diagnosed with fibro my dr didnt tell me what to expect or tell me what symptoms to look out for or even how to treat a flare… hell she didnt even tell me what a flare was. I am grateful to everyone here on this support group and to those who post on Pinterest and other types of social media bc if it werent for yall i wouldnt know alot of what i do now. I read and read about fibro when i got diagnosed but learned about fibro more on here than anywhere else.


#10

Do you also still show markers for RA? like I do? I wonder if there is any connection between the two


#11

Hi, no my RA markers were negative. The inflammation markers & alot of other labs were very high though. I think i read somewhere that there might be a connection between fibro & lupus, RA & trigeminal neuralgia…if i find where i read that i will post it


#12

Hi Colleen,

I know it’s been a while since your original post. I hope your appointment went well.

Your symptoms, at least the migrating pain with different types and intensity in all four quadrants of your body sound just like my fibro symptoms. Each individual has additional symptoms that may not be easily categorized. I will say that if you have any doubts use your energy and passion to look into everything now. I did about 8 different doctors and had the same conclusion - fibro, but also found I had hypothyroidism and PCOS as well.

Regarding your breathing, if you are on birth control I would recommend ruling out a PE. CT with contrast should do the trick.

The facial numbness and tingling, and eye floaters are strange symptoms. May want to see an ophthalmologist (MD) just to make sure everything is okay.

A rheumatologist is a great person to order the inflammatory markers and tests and to help rule out other conditions.

Fibromyalgia is really just the diagnosis of last resort, sadly.

Good luck! Let us know how things have gone.


#13

Hi there, for a few months I have been having these spasms in my hands. They are happening more frequently now. And there is this annoying pain that goes along with it. Sorta like restless leg pain. I asked the rheum dr that works in my clinic about it and he is thinking uit’s my meds causing the abnormal movement in my hands & not the fibro. Does anyone else have this annoying symptom?


#14

Hi Meow,

Thanks for your response!

I admire your perseverance to see 8 different doctors! Was there one that stood out from the rest? Did you tell the new doctors you saw that you had previously seen other doctors? Qualities in a physician you’d recommend one look out for?

Seeing a rheumatologist is a good idea. I’ve had lupus and RA ruled out so far.

I’m not on birth control. My breathing got better for quite a while, but it’s starting to act up again, mind you where I live there is smoke from wildfires every day, so it’s hard to tell what is causing it.

I started seeing another doctor as the other one I was seeing, although a kind person, wasn’t really interested in investigating my symptoms further. I started some medication he recommended for fibro but it didn’t help. Instead, I lost my appetite and began to get quite ill in my stomach.

I went to an optometrist and they couldn’t see any reason I would have floaters, but I still have them!

The new doctor, although not nearly as friendly, has so far sent me for a thyroid ultrasound, lyme disease test and an ultrasound of some swollen lymph nodes I have.

Have you ever had any swollen lymph nodes with your fibro? Apparently, it is quite common with CFS, which the other doctor also suspected I might have in conjunction with fibro. I also know swollen lymph nodes can be a sign of more sinister things, but I’m trying not to think of it too much.

What is the longest you’ve had pain for? I’ve had pain every single day for almost three months and nothing seems to help. I’ve tried ibuprofen, meds from the doctor, CBD oil…I’m really started to feel completely ground down by it.

My pain is quite bad up my neck, across my collarbone, in my shin area and forearms now. I also get strange headaches. It’s all super draining. It’s hard to think about something (anything) else when you’re always in pain.

I appreciate all of this support, it makes such a difference!


#15

Hi Andrea,

I don’t get spasm in my hands, but I feel spasms in my arms and legs at times. The muscle twitches for no obvious reason. Is this similar to what is happening to you?


#16

Yes, out of no where my hands make a quick sudden movement. But i can hold my hand out and tell my husband to watch how my hand moves and it won’t move at all. Makes me feel stupid actually. I dropped a glass once bc of it so now i hold my cups in between my arm and body. Im scared to just hold anything in just my hands. For a few days the movement was happening alot more frequently so my hands started hurting. Do you think its from the fibro or meds? How often does it happen to you?


#17

I was pretty honest with each physician about my other physician visits and diagnosis from them. And why I wanted to rule out everything. I was pretty thorough in exploring a variety of MDs and alternative practices like acupuncture and chiropractor. My favorite MD I only saw a few times, but she was a holistic MD/ allergist. She diagnosed my thyroid problem. She did allergy testing and what not, but was very kind and gentle. She spent time with me, answering all my questions. The 5 minute in and out physicians that write prescriptions outside the room and depend on the staff to educate are to be avoided. One even stopped assessing me, would just look at me, ask my symptoms and walk out.

Some MDs hear fibro and write you off. Others really have a passion for diagnosing correctly. They will run tests based on your symptoms and a journal is so important.

I did have an ultrasound of my thyroid and breasts, but not for lymph nodes per say. Mine feel fine.

I have pain every day as well. I can only remember a group of 3 days where I can say I was completely pain free. Every other day is a challenge. But I like to win, so I try to persevere. :wink:


#18

Hi Andrea,
I’m not sure. I’ve not been on meds for quite a while (two months almost, I believe) and I find it still happens from time to time. It’s never so bad that I fear I would drop anything or that it impedes my movements.
I’m really sorry you’re going through that, it sounds really hard.
Have you looked up the side effects to you medications to see if muscle spasms are listed?
I wonder if it might be worth going to your doctor for?


#19

Hi Meow,

A journal is a really good idea. I find I often have so many symptoms it’s hard to keep track of what is happening. I’m going to start doing that.

Where I am most clinics are on a fairly strict 10 minute appointment schedule. I often feel rushed. Even with my family dr, she’s very quick when she speaks and examines me.

I’m being sent to an ENT to look into my neck/throat issues. It also sounds like I may have one last blood test to do, a CRP test, then the dr basically said that if all of that is clear she doesn’t know what to do.

Have you found anything that helps with the pain? I asked my dr and she said all I can do is extra strength tylenol. I tried that last night and it didn’t work at all…

You have a really positive attitude regarding the pain! I find it so debilitating at times I just start crying…and I miss life before I was ill, of course.

I’ve yet to find that dr with a passion for diagnosing. I want to find them. Like a real life House or something :wink: The one I’m currently seeing is definitely better than the other dr, mind you.

Thanks for the suggestions. I’ve made an appointment with a chiropractor and am considering one with massage therapy, as well.

It’s really nice of you to respond. None of my friends or family have ever experienced anything like I am experiencing now and it can make me feel a little alone with my issues…or at least as though no one fully understand, despite how lovely they are, if that makes sense.


#20

Aww you are more than welcome. I rely on this site to feel that I am not alone and to continue “helping patients” since I cannot be bedside anymore. I know what you mean with the 10 minute appointments, it’s the worst and I have broken down crying when my doc just walks out the door without hearing me. It sounds like your doc has looked into everything so that is reassuring although it may feel like a bullet.

I have tried some really strong opioids, and they worked but I developed a tolerance, didn’t want to go to a higher dose so I weaned myself off. Tramadol is a synthetic opioid that works when I am having a hard time sleeping due to the pain. I take it a few times a week. I also have flexeril or cyclobenazeprine, which is a muscle relaxer that helps big time with my back pain and spasms. Cymbalta worked for me as did Elavil. They are both antidepressants and just boosted my neurotransmitters to relieve the constant pain.

Regarding positivity, it was not always that way, and I still have days where I want to not live, but it is more of a passing thought that I would have no regrets if I suddenly got in a crash or something. I just don’t want to suffer, and I know many people here feel that way. I have found that being focused on anything other than my pain, for my mental well being, is super important. I found some music that was super helpful for my “meditation.” Porecelain by Helen Jane Long, and lately I have enjoyed Ludovico Einaudi. You can check them out on YouTube, but I use Amazon Music. I also love fantasy novels, and they give me a world and characters I can escape to. And therapy for a few months helped me come to grips with the harder things.

I once attempted gluten free but that didn’t last long. It’s not like a diet where you can have a cheat day. I have also tried eating more veggies but they started going bad too fast so I don’t want to waste money.

Everything is worth a try. You never know what will help your body.