Feeling unhopeful from recent diagnosis. Suggestions?

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My story is somewhat long but I need to put it all out there to try to get some insight. I have been having the following symptoms for several years. These symptoms have drastically worsened since my knee surgery last year (MPFL Reconstruction - August 2017);

Migraines

Insomnia 

Excessive Sweating

Extreme Fatigue

Joint Pain, Swelling, Stiffness & Weakness 

Frequent Nasal Sores

Tachycardia 

Shaky Hands 

Vertigo

Bouts of Fainting 

Flexible Joints 

Bilateral Hip Bursitis 

Anxiety & Depression 

Foot Pain

Psoriasis (Scalp & Ears)

Back & Neck Pain 

Bruising

Hair Loss

Frequent Fever

Scapula Itching 

I saw a Rheumatologist about 4 years ago who tested me for RA. I have a strong family history but it was negative. I was even negative for the gene. He told me that I had “chronic inflammatory disease” and “hip bursitis”. He said the bursitis was caused from me being overweight, (I was about 180 at that time). He started giving me injections every 6 months for the bursitis and prescribed Meloxicam. The Meloxicam did not help me so I do not currently take it. As far as the bursitis goes, I started doing the Keto diet and dropped down to 155 (my current weight). It has made me feel somewhat better physically but not a huge change so I not believe that weight is the factor in that. 

Moving on, after I healed from my knee surgery last year, my health started to drastically decline. I told my PCP about everything that had been going on and he gave me a referral to a different Rheumatologist. My PCP suspected I may have Lupus but wasn’t sure because my labs were normal. In the mean time my PCP prescribed me Tramadol for the pain, Metoprolol for the tachycardia, Sertraline for the anxiety and Ambien for sleep. He said we would wait for me to see the Rheumatologist before he sends me to a Neurologist for the migraines and insomnia. 

I waited 8 long months to see the Rheumatologist and she spent no longer than 10 minutes with me before she said I have “Fibromyalgia” and EDS/Hypermobility Syndrome. She said theres not much she can do for me.. to try yoga, meditation or cognitive behavioral therapy. She said she would do some labs, x-rays that and get back with me. The nurse called me last week and said I have Hyperthyroidism (which makes sense for the sweating issue and even fatigue) but other than that, my labs and x-rays are normal. She told me to follow up with my PCP regarding medication for the thyroid issue and possible medications I can take for the Fibromyalgia. She’s also referring me to a Dermatologist for an official diagnosis of Psoriasis. She said it COULD be possible that I could be developing Psoriatic Arthritis but she’s really not sure. I see the Dermatologist on the 21st of this month and my PCP on Monday.

I hate feeling like I’m crazy! Doctors just look at you like you’re a Hypochondriac. I’m not downing Fibromyalgia but I feel like it’s is an easy diagnosis doctors throw around here and there to not have to do further testing or really look for the underlying problem. I know my body better than anyone and something more is going on. I’m 31 y/o and feel like I’m 70 most of the time. This has drastically changed my life over the past year and I just want some valid answers with some valid treatment options. I’m in debilitating pain every day. It’s hard to get out of bed because of pain, fatigue or migraines. I feel a lot of shame and guilt because of all of this. I rarely make it to work lately and my boyfriend has to pick up the slack. Coming from someone so independent, this is really hard for me. 

Any suggestions, advice or opinions would be appreciated. Thanks! smile

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4 Replies

  • Posted

    You might want to look into TMS and maybe read a book by Dr. Sarno. I have tried many things and even though I just found out about this I figure it might be worth a chance. These chronic symptoms just don’t seem to make sense to me and I feel like you always hear the story that someone had a trauma of some sort before it all began. 

    Maybe give it a try, the worst that could happen is that it doesn’t work. Keep your chin up, you aren’t alone. 

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  • Posted

    Brittbb,

    Your not crazy and I'm sorry for what your going through. Doctors can't diagnose me correctly either. I suffer from a lot of the same symptoms. I have multiple cysts, one on my thyroid, extreme fatigue. For my tachycardia I take potassium supplements. It helps me, I have chest flutters and rapid heart beat.

    Look into colitis and crohns, possibly celiac disease. Ask to be tested for those. My doctors always speculate, but never nail anything down. I have seen various doctors and they all come up with something different or think I'm crazy. For RA, there is no real definitive test and you could test negative 12 times before its positive. It took 8 years for my sister to be diagnosed with Lupus and RA. Your in the medical revolving door, and yes, they think everyone's crazy. Be strong and don't let anyone tell you they know more about your body than you do.

    Stay strong and hugs.

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  • Posted

    Thank you both so much for your replies. I will look into the TMS. I think I remember someone mentioning that to me before. I see my PCP on Monday to talk about the thyroid issue so I’ve got several things I’m going to talk to him about since the visit with the Rheumy. I’m going to get into therapy again and see if that helps with the stress as well. I’m not ever going to give up fighting! It’s helpful to be able to vent and have people who care and listen. Thanks again! ❤️ *Hugs* 
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  • Posted

    All of your symptoms sound like Chronic Inflammatory Response Syndrome, in which you would need to be taking binders to get rid of toxins, have a test for Marcons, supplements etc. I have CIRS and went through Immunology, Rheumatology etc. My PCP kept trying to tell me it was Lupus when it was not. All of your symptoms are part of CIRS, there are a few others that you can have but not everyone does. ( increased static shocks, increased urination, numbness/tingling, swelling) May be worth looking into. Best of Luck!
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