The problem we all deal with
 

You mentioned that you're wasting away from head to toe? Does that mean that your entire body has now become incapable of doing anything or handling any kind of motion whatsoever? If so, my heart goes out to you since it appears you really can't do anything more than just sit and wait for the day to pass.

I'd like to suggest a bit different approach. How about working your tail off with whatever you still have even when it still causes you pain? Our bodies are designed to move. When we don't, they atrophy away so we don't have any muscles to use when we really need them. Part of the RSD hell is accepting that we have to move our body even when it does cause us additional pain. If we don't, then our pain actually increases over the long haul thus making the situation even worse - only we don't realize it at the time.

You do need therapy and I know that I'd be lost without it. I have gone for years and also do what I've learned at home. We must move whatever body parts we can so we don't loose anymore than we already have.

I know it's hard, but I know you'll do whatever it takes so you can create a better life. That's half the battle right there. Best of luck. Bob.

Deb and everyone else suffering here, 1st I would like to offer my understanding and support. 2nd, I have to agree that we have to push ourselves at times to move, knowing it will cause us pain. It is true, the longer we stay motionless the stiffer, weaker and more pained we become. My RSD/CRPS is in my hands and forearms, so no, I do not know what it feels like in my feet, but I do know that no matter what, I need my hands for one thing or another all day! It hurts, burns like heck, swells like water balloons and so on, but if I do not move them, there will come a day when my choice of moving them will be gone. I have had 4 blocks, doctor now requesting a tens unit for home, I go to PT 2x week, take a host of medications and am still right where the rest of you are......in pain. A few years ago (just for exercise, prior to all of this fun with my hands) I joined the Y for water walking and found it to be weightless exercise! I loved it and am looking forward to opening my pool this season to get back in the water and move...even if it moving the parts that are still good. It also tired me out and helped me sleep @ night. (not sure if it will now with insomnia and pain) but I am ready to try!

Please, hang in there and here, I have found comfort in so many postings here that were not even for me.....we must fight and push each other when needed so we do not contribute to each other wasting away.... :)

good luck!

Dear Debbie -

I am so sorry for not opening your thread earlier. I had no idea you had this Dx. Please forgive me. It sounds as though you are under a great burden. Still, I am so glad you got the referral to the endocrinologist.

And the good news, such as it is, is that what you've got (and whatever it turns out to be) seems - but only to my reading, mind you - to be readibly treatable with a surgical resection. The key point may be in doing a minimally invasive procedure so as not exacerbate your CRPS. And apparently, there are one or more such procedures, which are done laparoscopically via endoscopy. See, e.g., Minimally invasive thyroid and parathyroid operations: surgical techniques and pearls, Lang BH, Adv Surg. 2010;44:185-98.

Division of Endocrine Surgery, Department of Surgery, University of Hong Kong Medical Centre, Queen Mary Hospital, 102 Pokfulam Road, Pokfulam, Hong Kong SAR, China. blang@hkucc.hku.hk

Abstract
With advances in technology and greater demand for minimally invasive procedures, novel minimally invasive approaches to thyroid and parathyroid glands increasingly have been described and practiced worldwide. For the MIT [minimally invasive thyroidectomy] approaches, the direct/cervical approaches truly can be considered minimally invasive, as they require less surgical dissection than the conventional thyroidectomy. The indirect/extracervical approaches, however, only can be considered endoscopic, however, because they generally do require greater surgical dissection. Still, among the indirect/extracervical approaches, the axillary approach appears the preferred choice, as it requires the least amount of dissection while offering the advantage of being scarless in the neck. The addition of the robot such as the de Vinci surgical system could make some of the extracervical approaches technically less challenging and improve patient outcomes. Unlike MIT, MIP has become the standard approach for surgical management of primary hyperparathyroidism caused by localized solitary parathyroid adenoma. [Emphasis added.]

PMID: 20919522 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20919522

Moreover, it appears that these approaches work just as well as any incision through the neck. See, e.g., Minimally invasive video-assisted parathyroidectomy versus open minimally invasive parathyroidectomy for a solitary parathyroid adenoma: a prospective, randomized, blinded trial, Barczyński M, Cichoń S, Konturek A, Cichoń W, World J Surg. 2006 May;30(5):721-31.

Department of Endocrine Surgery, 3rd Chair of General Surgery, Jagiellonian University College of Medicine, 37 Pradnicka Street, Kraków, 31-202, Poland. marbar@mp.pl

Abstract
BACKGROUND: A variety of minimally invasive parathyroidectomy (MIP) techniques have been currently introduced to surgical management of primary hyperparathyroidism (pHPT) caused by a solitary parathyroid adenoma [noncancerous (benign) tumor of the parathyroid glands]. This study aimed at comparing the video-assisted MIP (MIVAP) and open MIP (OMIP) in a prospective, randomized, blinded trial.

MATERIALS AND METHODS: Among 84 consecutive pHPT patients referred for surgery, 60 individuals with concordant localization of parathyroid adenoma on ultrasound and subtraction Tc99m-MIBI scintigraphy were found eligible for MIP under general anesthesia and were randomized to two groups (n = 30 each): MIVAP and OMIP. An intraoperative intact parathyroid hormone (iPTH) assay was routinely used in both groups to determine the cure. Primary end-points were the success rate in achieving the cure from hyperparathyroid state and hypocalcemia rate. Secondary end-points were operating time, scar length, pain intensity assessed by the visual-analogue scale, analgesia request rate, analgesic consumption, quality of life within 7 postoperative days (SF-36), cosmetic satisfaction, duration of postoperative hospitalization, and cost-effectiveness analysis.

RESULTS: All patients were cured. In 2 patients, an intraoperative iPTH assay revealed a need for further exploration: in one MIVAP patient, subtotal parathyroidectomy for parathyroid hyperplasia was performed with the video-assisted approach, and in an OMIP patient, the approach was converted to unilateral neck exploration with the final diagnosis of double adenoma. MIVAP versus OMIP patients were characterized by similar operative time (44.2 +/- 18.9 vs. 49.7 +/- 15.9 minutes; P = 0.22), transient hypocalcemia rate (3 vs. 3 individuals; P = 1.0), lower pain intensity at 4, 8, 12, and 24 hours after surgery (24.9 +/- 6.1 vs. 32.2 +/- 4.6; 26.4 +/- 4.5 vs. 32.0 +/- 4.0; 19.6 +/- 4.9 vs. 25.4 +/- 3.8; 15.5 +/- 5.5 vs. 20.4 +/- 4.7 points, respectively; P < 0.001), lower analgesia request rate (63.3% vs. 90%; P = 0.01), lower analgesic consumption (51.6 +/- 46.4 mg vs. 121.6 +/- 50.3 mg of ketoprofen; P < 0.001), better physical functioning aspect and bodily pain aspect of the quality of life on early recovery (88.4 +/- 6.9 vs. 84.6 +/- 4.7 and 90.3 +/- 4.7 vs. 87.5 +/- 5.8; P = 0.02 and P = 0.003, respectively), shorter scar length (17.2 +/- 2.2 mm vs. 30.8 +/- 4.0 mm; P < 0.001), and higher cosmetic satisfaction rate at 1 month after surgery (85.4 +/- 12.4% vs. 77.4 +/- 9.7%; P = 0.006). Cosmetic satisfaction was increasing with time, and there were no significant differences at 6 months postoperatively. MIVAP was more expensive (US$1,150 +/- 63.4 vs. 1,015 +/- 61.8; P < 0.001) while the mean hospital stay was similar (28 +/- 10.1 vs. 31.1 +/- 9.7 hours; P = 0.22). Differences in serum calcium values and iPTH during 6 months of follow-up were nonsignificant. Transient laryngeal nerve palsy appeared in one OMIP patient (P = 0.31). There was no other morbidity or mortality.

CONCLUSIONS: Both MIVAP and OMIP offer a valuable approach for solitary parathyroid adenoma with a similar excellent success rate and a minimal morbidity rate. Routine use of the intraoperative iPTH assay is essential in both approaches to avoid surgical failures of overlooked multiglandular disease. The advantages of MIVAP include easier recognition of recurrent laryngeal nerve (RLN), lower pain intensity within 24 hours following surgery, lower analgesia request rate, lower analgesic consumption, shorter scar length, better physical functioning and bodily pain aspects of the quality of life on early recovery, and higher early cosmetic satisfaction rate. However, these advantages are achieved at higher costs because of endoscopic tool involvement.

PMID: 16547619 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/16547619

Bottom line: if your doctors recommend surgery, I would strongly urge you to request the most minimally invasive procedure possible, with the anesthesiology done in consultation with your pain management physician.

And with any luck this could resolve your recent issues of muscle wasting.

Good luck and much love :Heart:

Mike

TY
 

I do go swimming at the Y at least twice a week but my muscles feel worse after...which is new for me..They use to feel better. As I am swimming my neck gets stiff and back muscles get strained and left leg and knee hurt a lot..but I will keep on keeping on....
Deb

TY
 

As always thanks for your information.. My PM, Neurologist and endocronologist do not think this is contributing to my pain or muslce wasting

Dear Debbie -

Understood. I guess this article is what got my attention, without having focused on the fact that it was referring to double adenomas, while you only have a single tumor: Double parathyroid adenomas. Clinical and biochemical characteristics before and after parathyroidectomy, Tezelman S, Shen W, Shaver JK, Siperstein AE, Duh QY, Klein H, Clark OH, Ann Surg. 1993 Sep;218(3):300-7; discussion 307-9, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...00067-0102.pdf

Surgical Service, University of California at San Francisco.

Abstract
OBJECTIVE: There is considerable debate about whether double parathyroid adenomas are a discrete entity or represent hyperplasia with parathyroid glands of varying sizes. This distinction is important because it impacts on the extent of parathyroid resection and the success of the parathyroid operation.

SUMMARY BACKGROUND DATA: Double parathyroid adenomas have been reported to occur in 1.7% to 9% of patients with primary hyperparathyroidism (HPT). It is important for surgeons to differentiate between double adenoma and hyperplasia with glands of varying sizes using gross examination during the initial procedure because microscopic findings of a small biopsy specimen at frozen-section examination may not be diagnostic.

METHODS: From 1982 to 1992, 416 unselected patients (309 women and 107 men) with primary HPT without familial HPT or multiple endocrine neoplasia (MEN) were treated by one surgeon at the University of California at San Francisco. Double adenoma occurred in 49 patients, solitary adenoma in 309 patients, and hyperplasia in 58 patients. The authors analyzed the clinical manifestations, the preoperative and postoperative serum levels of calcium, phosphate, and parathyroid hormone (PTH), and the success rate and outcome after parathyroidectomy and compared their results in 49 patients with double adenomas to the results for patients with solitary adenomas or hyperplasia.

RESULTS: Ten of the patients with double adenomas (20.4%) were referred for persistent HPT after removal of one abnormal parathyroid gland. The ages of the patients with double adenoma, single adenoma, and hyperplasia were 61 +/- 14, 56 +/- 15, and 58 +/- 7 years, respectively. Fatigue, muscle weakness, and bone pain were common in patients with double adenomas, whereas nephrolithiasis occurred more frequently in patients with solitary adenoma (p = 0.0001). Serum calcium and PTH levels (per cent of upper limit of normal) fell from 11.5 +/- 1.2 mg/dL and 487% to 9.5 +/- 0.8 mg/dL and 61% for patients with double adenomas; from 11.9 +/- 0.9 mg/dL and 378% to 9.3 +/- 1.4 mg/dL and 101% for patients with single adenoma; and from 10.9 +/- 0.5 mg/dL and 418% to 9.1 +/- 0.7 mg/dL and 94% for patients with hyperplasia, respectively. There was no recurrence in the patients with double adenomas with a mean follow-up time of 5.8 years.

CONCLUSIONS: Double adenomas are a discrete entity and occur more often in older patients. Patients with double adenomas can be successfully treated by removal of the two abnormal glands. [Emphasis added.]

PMID: 8103983 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/8103983

So now, at least you'll get the matter behind you, whatever it's doing.

Mike