Do I really want to join a support group?

After all, I have no diagnosis for my symptoms, except superior vena cava syndrome, and there is no support group listed for that!  Besides, the vascular surgeons say I have developed sufficient collateral veins to make up for the obstruction above my heart, so I am "fine".  Besides, nothing shows up on my blood tests, evaluations show my heart and lungs to be normal, and I seem to be in remission since my breast cancer diagnosis four years ago.  I am grateful for that, truly!  But I am neither "fine" nor "normal".  Admitting that is really, really hard.  I still have this debilitating array of symptoms that were at first written off to chemotherapy side effects and then to the superior vena cava syndrome (a blood clot as large as a hot dog formed around the chemotherapy access port in the major vein above my heart and hardened, completely and permanently blocking blood flow).  My symptoms?  During chemotherapy I started with swollen cervical lymph nodes, especially those in the back of my neck causing chronic headache and dizziness; shortness of breath, difficulty concentrating, neuropathy, extreme fatigue with or without exertion, and heat intolerance.  All pretty typical reactions to chemotherapy, right?  Well, of course, I also lost my hair and had some nausea, but that didn't bother me so much. While undergoing 9 weeks of radiation therapy at the Cancer Treatment Center of America in Tulsa, I received physical therapy in addition to acupuncture, reflexology, mind body medicine, and naturopathic care.  I felt my condition improved. Following treatment, I returned to my work as a bookkeeper and even managed to rehearse and perform a supporting role in a community theater musical.  Admittedly, I did NO housework at that time and felt very tired and drained.  Within two months of completing therapy, I developed occasional swelling of my neck, face and arms, extreme shortness of breath and exhaustion, dizziness, pounding in my head, visual disturbances, and pronounced heat intolerance.  These symptoms would wax and wane to no particular rhythm, but were always exacerbated by exertion, bending over or turning my head, and they severely limited my ability to work.  Finally, after months of visiting various doctors and undergoing multiple imaging studies, I was found to have a blood clot that formed around the implanted chemotherapy access port.  The clot hardened and has completely and permanently blocked the major vein above my heart.  The condition is called superior vena cava syndrome.  I was hospitalized several times for this and am currently maintained on Xaralto and aspirin. Some of my symptoms have improved somewhat  with treatment and since the formation of the collateral veins, but they have continued to the extent that I can no longer hold a job and can barely keep house. Some days I can feel almost normal, until I try to do something -anything that requires bending over or even minimal exertion.  That again brings on extreme fatigue, dizziness, shortness of breath, pounding headache and visual disturbances. Sometimes, I don't really feel the affects until the following day when I will be completely wiped out for one or two days!  I also still have mild neuropathy in fingers and feet, frequent muscle cramps, and I am unable to concentrate or remember things.  My primary care physician has sent me to several specialists and is now just flummoxed.  At my last appointment she mentioned that some of my symptoms seem compatible with Fibromyalgia.  I did some online research into that subject which led me to the condition of Chronic Fatigue Syndrome. Could that be it?  If so, did CFS contribute to the symptoms that were connected to chemotherapy and superior vena cava syndrome? Would it be a relief to finally have a definitive diagnosis?  Mmmm, I don't know...maybe not.  I had never heard of CFS before. But fibromyalgia?  What little I had heard about that led me to believe it was a condition claimed only by hypochondriacs or by people who were lazy and just looking for attention.  I always felt they should get a dog or try thinking of someone else for a change. Quite an uncharitable and judgmental attitude, I know and now regret.  I suspect that I am now being judged the same way.  I feel embarrassed and reluctant to pursue a diagnosis.
But, here I am.  Actually, I think putting this all down in black and white has helped somehow.  So I guess I will click on the chronic fatigue syndrome support group and see if someone can let me know what type of specialist I should see.  I believe the next specialist my PCP is considering is a neurologist. Is that the right direction?