Or, how much pain can you work through on a daily basis?
How much would your body allow you to do with pain on the scale that’s typically 7 to 10? I’m frustrated, because I’d prefer to be active, being able to minister and do for my family like I once did…. and no one seems to “get” that.
Yesterday we pulled off the usual logistics nightmare that involved a trip into Boston. Trish Dunn took the kids, except for John, who after a very disheartening and inexplicable episode, is spending a week in Brockton with his biological sister and her husband.
Dr. Anderson, a highly-recommended rheumatologist based at Brigham and Women’s Hospital in Boston (where Isaac was born), seemed to be highly skilled, and asked excellent interview questions. He is, unless we’ve missed some, the tenth doctor Nichelle has seen in the past two years.
Primarily, we forcused on the constant, very severe pain she is experiencing. He was able to rule out bone disease, tumors, diseases involving musculare weakness, nervous system disorders, and joint diseases such as osteoarthritis and synovitis. This left him with our old enemy diagnosis: Fibromyalgia. He explained that Nichelle had already tried most of the medications (and all of the types of medications) that normally help alleviate Fibromyalgia symptoms.
He suggested and later reiterated that he believed exercise would provide the most benefit. We twice explained very clearly that the recurrence of the debilitating symptoms occurred during a period of consistent and signficant daily exercise, and that the inability to do things like walk more than a few steps without intense pain makes exercise very difficult. He spoke of the “mind-body connection,” and how things like Yoga (although he does not “believe” in it per se) or meditation and other things that have to do with the mind-body connection can, in conjunction with exercise, be of benefit, indicating that one can change “how your body talks to you.”
He asked if she’d tried any of the various restrictive or eliminating diets, but we don’t know if he was thinking about the consideration of food allergies or sensitivities, or just throwing out possibilities. We discussed other alternative therapies: chiropracty (provided only very temporary relief), therapeutic massage (provided only very temporary relief), and accupuncture, which we are willing to try (there’s an opiate receptor model for how accupuncture actually works, which may make it ideal for treating pain), but we haven’t been able to find a practitioner covered by our insurance.
One of the more interesting things he asked Nichelle was, “If you were on the Western frontier 150 or more years ago, how would you handle this?” Later I thought of a really good answer: “She’d become a judge, and hang a whole lot of doctors.”
Overall, it was a long, discouraging day, especially due to the added concern about John.
This morning Nichelle seemed determined to fight through and determine just how much she could accomplish before completely succumbing to the pain. She even drove herself to the lab (5 minutes away) to get the latest bit of blood work done.
Nichelle made appointments today with the Pain Management Clinic at Southern New Hampshire Medical Center, and with who we hope will be a good primary care physician. Both are not until the end of July or first week of August.
Dr. Hall (who ties with Dr. Rescigno for “Best Doctors We’ve Ever Had”) called back with her latest test results: Nichelle’s vitamin D level was good, and her PTH (parathyroid hormone) level was good, which means that the hyperparathyroidism was indeed caused by the vitamin D deficiency. The importance of vitamin D was largely overlooked until fairly recently, we learned from Dr. Hall, and vitamin D deficiency has turned out to be very common, especially in the Northeast.
We’ll have some other test results, such as for hemoglobin disorders and blood cortisol levels, next week.
Later today Nichelle goes in to Mass. General for two bone density tests. The illustrious Debi Costine is providing transportation (we’re bribing her with Middle Eastern food), and Cindy Lavoix and company are coming over to our house to watch the kids (or play with our game systems; I’m not sure which), which means I get to go to work.
11 Replies to “Mind-Body Connection: Rheumatologist at Brigham …”
A thought from WAY out in left field:
Does Nichelle feel better when she is away from the house for an extended period of time? Does she do a lot of work in the basement (washing cloths, etc)? The reason I ask is the during a renovation in our sons room in the basement we were shocked to discover a huge amount of MOLD (in this case a powdery-white) behind all the walls.
I shudder to think about Alex getting sick and us not knowing what he was getting sick from…
Nichelle hasn’t been away from the house for any length of time longer than a couple of hours, although we hope to have a week away this summer.
A mold allergy is interesting. We just installed a dehumidifer, and are working on de-musting Isaac and David’s room after a water leak that was incidental to some plumbing work we had done. However, Nichelle is rarely down there. Doesn’t mold tend to produce respiratory symptoms?
Wow, wow, wow. I am at a loss for words. I think not knowing has got to be the worst case scenario. You are always in my prayers, Nichelle (and Doug and family).
HEY!!!! I thought I was the only MJ!!! Anyhow, I pray for you often!! More like, always…. Praying for the right Doctors, and the right tests, and more important healing. I love you guys!!!
To both Doug and Nichelle…I luv ya both and pray that the doctors will find something that will heal this situation. will keep you in my prayers
Nichelle and doug – was home yesterday prayig for you – i am so at loss for words that you did not get any real answers – am praying for a diagnoisis and a remedy. my heart is with you all. sincerely in HIM helen
Hey Doug and Nichelle,
I just wanted you to know we continue to pray for this whole situation. Just remember, we serve a bigger God than this situation, and times like this can bring about discouragement. Stay focused on Him. I know you both know this already, but sometimes in the midst of trials, we can lose focus. We are also praying with you concerning John. Remember who loves you, we do of coarse, but there is one who loves you greater than I or anyone else has the ability to. Remeber, he has a purpose greater than we can understand, and timing that is much different than ours. All things…..All things work out for those who love the Lord. Anyone who knows the Wilcox family knows they love the Lord.
We are immensely grateful to all of you for the encoruagement and prayer on our behalf.
Any word or results from the bone desity tests??? Your entire family has been on my mind constantly….If I can helpl, please utilize me. Although the tea party will be next weekend, Naomi is welcome to come over for a visit whenever…..I’m a call or an e-mail away, as well not too far away!
Wouldn’t you love to let this guy experience some of your pain and them watch him try to do some yoga!!! AAAHHHHH!!! This kind of thing drives me crazy!!! I had an episode last fall that included fatigue, brain fog, burning/numbness in my feet and legs, and problems walking and I had a person tell me to “think more positive thoughts”- like I was a little blue or something. There IS a mind-body connection, and it can help when things are properly managed, but when things are so out of whack it is like emptying out a lake with a dixie cup. Forget this whahoo and get somebody who can start systematically seeing how you respond to various pain medications. The “how would you deal if you were a pioneer” question makes me think he is implying that you are a spoiled overly-sensitive modern American….. oh, if they could only be in your shoes for a day!!!
Beth, we ought to just start taking you to our appointments!
I made it very clear, twice, that an excellent exercise regimen did nothing to prevent or improve the symptoms—although many fibromyalgia patients find this to be the case—it just had no positive effect on Nichelle. Very quickly the pain became so significant (and the exhaustion for a while) that exercise was just out of the question.