Raynaud's and connective tissue disorders?

I saw a genetics specialist after a few nurses and my primary doctor suggested I might have Marfan's (very thin, tall, slight pectus deformity). The specialist determined I did not, but said I had "flawed connective tissue." For instance, despite being 5'9" and under 110 pounds, I have a lot of cellulite and stretchmarks. I was also diagnosed with Raynaud's when I was ten or eleven, and I have suffered from lots of back pain and pain in the wrists and hands (using a cellphone, typing, etc... are quite painful). I am also extremely inflexible (can't even come close to touching toes), unlike Marfan's sufferers. However, a physical therapist noted that my limbs hyperextend and my ligaments are very "loose" (e.g., my thumb joint kind of... rolls around more than other people's).

I had been told by irritating (but probably well-meaning) doctors for years to not limit what I eat and to let them know if I have an eating disorder... But I eat whatever I want (lots of fatty fast foods, usually, if I'm being honest). Once, during an EKG, a doctor asked if I had "food problems." If anything, I overeat. I have tried to gain weight, but I weigh exactly what I did when I was thirteen years old (I'm now 20). Of course, I have gained cellulite and stretch marks.

I never used to feel self-conscious, but I really have in recent months. I always feel uncomfortable and cold, and that genetics doctor very politely told me I looked "weird" and that she was surprised that more people hadn't brought it to my attention. Now all I can see is my pectus deformity, my blue feet, and my protruding bones.

I do really want to improve my health now, but I feel stuck. The doctor mentioned adopting an anti-inflammatory diet, but fresh fruits and veggies aren't very conducive to the budget of a college student. What are some tips to eating right? Has anyone else struggled to gain weight? Tips for exercising and building muscle? Anyone taking any supplements?

I'm not sure if this is worth noting, but my family history includes scleroderma/CREST, lupus, and MS.

Sorry if this is a bit long, but I would really appreciate any input! I just discovered this community and am so happy to be here. :)

4 Replies

  • I understand where you come from but suggest you see a rheumatologist instead of a geneticist; particularly because of your family history. I would not suggest you listen to people who tell you to take anti-inflammatory medication or diet until you have seen a rheumatologist and then see a dietician. Best wishes.

  • I would agree with the above poster, see a rheumatologist, please.

    Connective tissue disorder and Marfan type could be possible. I have Ehlers-Danos Syndrome, also a connective tissue disorder which also has Raynauds as a secondary sympton. But EDS & Marfans are very similar and do need to be throughly diagnosed as some versions of them do have serious life limiting issues.

  • Agree with the above replies. I have a great Rheumatologist - she takes time to discuss things with me properly. Also, have a great GP.

    I have had Raynauds now for about 25yrs and it was manageable but in recent years its become worse. Hands are cold all the time in spite of the medication. Maybe I'm just getting old.

  • I think this is along the same lines as what my son has, we are having him tested for EDS, he has the food allergy issues and suffers from EGID, has hypermobility, heart problems which again goes hand in hand with EDS, which is probably why they are asking you about your diet, have you been genetically tested?

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