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Posted By : MLC0013 - 12/16/2016 1:27 AM
Hello this message may be a little long so please bare wit me. I am a 25 year old male with several worrying symptoms. My symptoms include weight loss (35 lbs), weakness/pain throughout my body, muscle spasms, popping ears, pulsatile tinnitus, headaches on the back of my head, sinus pressure, TMJ dysfunction, swollen fingertips that produce green blisters, inflammation in my small bowel, stomach ulcers, esophagus dysmotality, burning while urinating at times, very noticeable veins in my hands, cyst-like Lumps in my breast area, my spine feels bruised and I have knee pain. I have had several tests (a ton of bloodwork, MRI of head/spine, CT of chest, MR Angiogram of neck and abdomen, nerve conduction test, doppler of neck, colonoscopy/endoscopy/pillcam, and a barium swallow test). The only things they have found are the inflammation in my small bowel, stomach ulcers, elevated liver enzymes, and swollen lymph nodes in my neck. I did have esophagitis but that has gone away. A couple doctors think I may have fibromyalgia while a couple others don't think I do.

My question is, does this sound like fibro to any of you? I know fibro doesnt cause inflammation, and I do have that in my small bowel (my GI issues came right around the same time as my other symptoms). I also do not get morning stiffness, do not have trouble sleeping, do not have "fibro fog", am not sensitive to loud noises or bright lights, and I have lost weight instead of gained weight. I have not had a pressure point test done yet, but have tried it on myself. I have sore spots when pressed on but it is not terrible pain. Is it possible to have fibro even without all of the symptoms I mentioned above? Thank you for taking the time reading and I would appreciate any opinions. Best wishes

Post Edited (MLC0013) : 12/16/2016 9:49:19 AM (GMT-7)


Posted By : Ljm2014 - 12/16/2016 10:43 AM
Many of the symptoms sound familiar to what we can experience.

However, weight loss ..not so much
Nor the blisters ...green?

You could have fibro but also something else going on..many of us have multiple issues..

Work on self help while they are trying to figure it out. My dr help s me about 50 per cent..and studying and self help..about 50...

Posted By : MLC0013 - 12/16/2016 10:53 AM
Ljm2014 said...
Many of the symptoms sound familiar to what we can experience.

However, weight loss ..not so much
Nor the blisters ...green?

You could have fibro but also something else going on..many of us have multiple issues..

Work on self help while they are trying to figure it out. My dr help s me about 50 per cent..and studying and self help..about 50...


Thanks for the reply. A doctor has mentioned reynauds syndrome to justify my cold hands, blisters, and swollen fingertips. However, I do not get color changes in my fingertips when exposed to cold. And Ya I have read that fibro makes you gain weight and I have lost weight. Was wondering if it is posiible to lose this much weight with fibro. Maybe my GI issues are causing the weight loss.

Posted By : couchtater - 12/16/2016 11:11 PM
Have they considered lupus since you have Raynaud's?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Sherrine - 12/17/2016 7:39 AM
Hi, Mlcoo, and welcome! I haven't seen that fibro has all of those issues. You might want to see a board certified gastroenterologist for the bowel problems. I have Crohn's disease and that can cause inflammation and ulcers in the small intestines. You do lose weight with Crohn's most generally so you might want that ruled out.

Seeing a board certified rheumatologist might help too. A board certified rheumatologist would run tests to rule out things like lupus (like Joy mentioned) and even Lyme disease. There is no good test for Fibro. They now aren't generally using the tender point test because some doctors don't know how much pressure to use plus we have good days and bad days.

But I agree with Joy and LJM that you could have multiple issues going on. Do try to relax and not stress out over this because that just makes things worse. Be methodical in your search for what is happening to your body and don't give up! You will find your answers.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro there and you will learn a lot.

Also, here is another good link about fibromyalgia.

umm.edu/health/medical/reports/articles/fibromyalgia

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Do let us know what you find out because we do care about you too. Hope to hear more from you soon.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : MLC0013 - 12/22/2016 10:22 AM
Rockon said...
ZForgot the link for mast cell info:. /www.mypatientmatch.com/posts/reference-thread-to-share-mast-cell-info-6194
G
My effing autocorrect. I am going to proof read the long reply better, now. I see that it changed HealthRising to Heathrow Intl airport. Lol.


Thank you so much for your reply. You have taught me more in your post than any of the dozens of doctors I have seen in the last year have. I don't understand much of your terminology yet, but I will definitely look into mast cells and other terms you have used. As crazy as it sounds I pray that I have fibromyalgia. It's the not knowing that is the worst for me at least. You have explained many questions that I have had with being skeptical of a fibro diagnosis, but I am more convinced that I could have it after reading your post. I just have to figure out what I causing my bowel issues. Crohn's, Celiac, and ulcerative colitis have all been ruled put according to my two GI doctors who have scoped me. But I appreciate you taking the time to give me all of that very useful info. I hope you are doing better and wish you the best.

Posted By : MLC0013 - 12/22/2016 10:27 AM
Hi Sherrine, thank you I have seen several GI doctors (one at Stanford another at UC San Francisco) and neither of them have any idea what I causing my inflamed bowel. I have had Lupus and Lyme ruled out. The one autoimmune that I am most worried about is vasculitis. As I have the pulsatile tinnitus, patchy inflammation aND cold fingers that can accompany vasculitis. I have heard that it can sometimes not be detected in blood tests too. Thank you for the reply I will check out that forum for sure.

Posted By : Ljm2014 - 12/28/2016 6:41 AM
I can get times of weakness, almost randomly, and heaven forbid if my vit d gets low then the weakness gets really bad...

There are days when i cannot do rather simple things, that i could do the day before..

I noticed through the past very busy month that, at the end of a shopping trip..i would get weak and fumbly ? Kinda start dropping things, and overwhelmed...

With fibro, we can push for a while but our bodies will usually push back..."

I am resting more now with christmas past, but i find sitting too much is almost worse than when i am pushing, so i took a day off, but will work back up in activity level, cause these bodies are meant to move..

Posted By : Karen3477 - 2/27/2017 5:29 PM
Hi,
I am sorry for all you are going through. It sounds terrible. There are a lot of doctors out there that throw the 'Fibromyalgia' label around when they don't know what is going on with a patient. I know people who have been told they have Fibromyalgia but yet they can run 5 miles! Unbelievable! I have had Fibro since the early 90's and have had a lot of strange things but you don't sound like anything I have even heard even in the support group I lead for 2 years. In reading your post, I feel like what you are describing sounds more like poisoning. Have you considered that? Also, have you seen a rheumatologist? They are the ones to assess you for Fibromyalgia. They also monitor any inflammation in your body. If I were you, I would totally make sure that everything that enters your mouth is 100% organic, whole food and no junk food....like boneless chicken breast that has no antibiotics or hormones and organic fruit and vegetables. Also, look at any medications you take. Even talk with a pharmacist about meds or supplements you may be taking. They may surprise you at what they know. I wish you the best and pray you find the source and are well again.

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