Rheumatologist Questions Doctor

Years of pain and symptoms unanswered?

Hello, I have a big family history of autoimmune and thyroid disease. This list includes lupus (grandma and mother), Hashimoto's (aunt and mother), scleroderma (sister), nmo/devics/neuromyelitis optica (mother), rhenauds (mother, sister, myself), and more that I cannot remember. I have factor 5 leiden, MTHFR C677T COMT (recently discovered), occipital neuralgia, a positive ANA diagnosis, arthritis, fibromyalgia. In the last couple of years, I have had extreme fatigue, chest palpitations, heavy legs, 30lbs weight gain despite barely eating, pain and fatigue in all joints, telogen effluvium hair loss since last may (2020), skin is very thin dry, and stretchy (it has always been very unusually stretchy), my eyesight has significantly worsened, I am always cold. I also have PTSD and major depression. Thyroid levels come back normal, all panels come back basically normal except cholesterol a little elevated, hormones basically normal. I cannot move, I have been sitting for 3 years because I get out of breath and am in pain. Any ideas of what it could be? I see dr after dr, they tell me to see a shrink its prob stress, seen the shrink, they have no answers and are not willing to test outside basic panels. I feel like I'm dying and every day I secretly just wish it would happen. Most of my pain is in my legs, they are heavy and not proportionate to my body. They just send me to pain management for lidocaine infusions without trying to find a cause. Thank you for your time!

Female | 34 years old
Complaint duration: 5 years
Medications: Amitriptyline, trintellix
Conditions: Occipital neuralgia, fibromyalgia, factor 5, MTHFR COMT, arthritis

3 Answers

RheumatologistDoctor
Hi there. Sorry to hear you are having a rough time. I am wondering if you have ever tried gabapentin for the pain you are experiencing? I am also curious about your weight/BMI. If you are also struggling with weight issues you may want to try a GLP-1 agonist like wegovy etc. I am also wondering if you have ever had your Iron levels assessed? And if they are low have you been given an Iron infusion or iron supplement or injection. I am also curious about your diet? Have you considered a low FODMAP diet or something that may assist you with the inflammation in your body. Is the Amitriptyline for your depression, to assist with sleep or an attempt at pain management? When you say you have been sitting for years, do you mean at work or at home between tasks? I would strongly suggest a referral to a rheumatologist to assit with your arthritis and fibro. I would also suggest you get a sleep study if your sleep is not of a good quality. Poor sleep can be the root cause of so many physical and mental health problems. Also, if you have a history of past trauma you really need to see someone
I am sorry that you feel so poorly
I assume that you have seen your family doctor and a Rheumatologist and maybe Neurology

The tests you had likely did not give them a clear answer

Referral to Pain Management, physical therapy, Aquatherapy are all reasonable

You have a complicated case and I always tell my patients to be open to a second opinion

I wish you the best!
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Dear patient,

Sounds really tough. The leg swelling and shortness of breath may indicate cardiac disease and you may be helped by a diuretic. Follow up with cardiologist, the arthritic complaints may be helped with rheumatologist consult. That is how I would suggest starting. The thyroid disease does not seem a problem now.
Good luck!

Respectfully,

Marvin A. Leder, MD FACP FACE