In this article, we will focus on how past patients described their recovery process and suggestions for coping. This information comes from a survey of our membership. We received a total of 91 responses, 28 of whom had adrenal tumors and 63 who had pituitary tumors. The question we asked regarding recovery and coping were “How would you describe the recovery process and what did you find helpful in coping with the recovery process?” We also asked members of our Medical Advisory Board what advice they gave their patients about the recovery process and their recommendations for coping and self-help.
Dr. Lynnette Nieman, NICHD, NIH Bethesda, MD
I advise my patients that they didn’t develop symptoms overnight, and won’t recover from the signs/symptoms quickly. It may take a year or more, but that they should improve little by little. Expect the first month or so to be the most difficult. I also tell them that the brain has shrunk and needs time to recover and that their quality of life will improve, but as a group, patients have lower quality of life scores than others of same age and gender. However, that doesn’t mean that will apply to a particular patient. Also, recovery is incredibly variable from one person to the next.
For coping and helping themselves recover, I tell them to get some exercise and make some recommendations about how to do that and how much. I recommend that they push themselves a little more every week, but to not expect big improvements quickly. Healthy food and drink intake and stress reduction techniques are also helpful. I also advise them to make sure that any other hormone deficiencies are addressed and to consider psych evaluation and intervention for the emotional issues that surface during recovery.
Dr. Mary Lee Vance, Univ. of Virginia, Charlottesville
Recovery and coping are tough questions to address; every patient is different. Over the years, I have been impressed that the rate of recovery is related to several things: (a) the duration of Cushing’s before treatment, (b) the severity of Cushing’s-related problems (amount of weight gain, muscle weakness, diabetes, hypertension, depression) – the more severe the symptoms and medical problems, the longer the recovery process, (c) age: younger patients tend recover much more quickly than older patients. My advice: patience, patience, patience. I tell my patients BEFORE surgery that they will probably feel worse after successful surgery than before the operation. I tell them to expect: fatigue, weakness (“feeling like a wet noodle”), to expect muscle and joint pains, to expect dry skin and generally feeling “crummy”. When they return for the post operative visit, they are frustrated and report these symptoms and I remind them that I warned them that this would happen (the patient doesn’t always remember, but the family member does recall what I said). So, the short answer: there is an expected difficulty during recovery after successful treatment of Cushing’s. The muscle aches and joint pains can be helped with medication (Aleve, aspirin). I also tell patients that it usually takes 6 to 12 months (and dieting to loose the weight) to recover from Cushing’s. I point out that it took a long time to develop loss of muscle mass and it takes a long time for this to improve. There is one good point: most patients have improvement in the emotional issues such as irritability, mood swings and depression long before the physical problems improve (sometimes family members are more aware of this improvement than the patient). However, if the patient has difficulty with memory this usually takes a longer time to improve.
As for coping with recovery and what they can do to help themselves, again recall that many patients had symptoms and signs of Cushing’s for a long time before diagnosis and treatment (From a UVA clinic survey, the average time from onset of symptoms to diagnosis and treatment is 3 to 5 years; sometimes much longer). Thus, “coping” is very difficult for the patient. My advice to my patients: (a) expect that recovery will be very gradual and slow; do not have “unrealistic expectations”, which result in frustration and anxiety; (b) try to increase exercise gradually, start slow and increase activity gradually; (c) do pay attention to diet and food intake, count calories; (d) know that things will improve, but improvement will be gradual; (e) if depression is a problem, continue treatment for depression; (f) again: patience, patience and patience: there is no way around this; (g) testing for growth hormone (GH) deficiency: if a patient is growth hormone deficient, GH replacement may improve the rate of recovery from Cushing’s. (I conducted a research study of GH treatment on recovery from Cushing’s and the results suggest that GH replacement helps with recovery [body composition, quality of life, exercise tolerance]).
Dr. Anne Klibanski, Massachusetts General Hosp.
I tell patients to BE PATIENT. Recovery can be difficult and takes time but, recovery will happen. Your body is accustomed to high levels of cortisol and although getting rid of these high levels is key to avoiding complications of too much cortisol such as weight gain, hypertension, diabetes and weakness, among many problems, you are withdrawing from a high cortisol level and this can cause fatigue, weakness and emotional distress. A slower taper of cortisol replacement may help with these symptoms but staying on the lowest possible amount of cortisol recommended by your doctor will enable your own hypothalamic-pituitary-adrenal axis to recover more quickly.
For coping or to help themselves, again, patience. Gradual, progressive increases in exercise duration and intensity will help regain muscle function, and assistance with emotional issues as needed are very important. A healthy diet, to help with weight loss along with being sure to get the recommended daily amounts of calcium and vitamin D for bone health is important. It has typically taken many months or even years for Cushing’s to be diagnosed and the process of true recovery is gradual. Take things slowly and keep your expectations realistic. Some effects such as high blood sugar or high blood pressure caused by Cushing’s may improve quickly after the tumor is gone, so these should be monitored carefully in case medications for these conditions need to be reduced, or in some cases even discontinued. Other symptoms and problems such as weight gain, muscle weakness and emotional and mood effects may take longer to improve. Get help from your health care providers, your family and patient support groups. A therapist may be useful in coping with the emotional upheaval associated with this disease. While recovery requires time, the good news it that with patience, exercise, a healthy diet, and support from others, most patients recover very well within 12-24 months after surgery.
What Patients Had to Say
Needless to say, anyone who has been through the recovery process realizes that it can be long and difficult. Almost everyone described the process as slow, difficult, very difficult, grueling and challenging. While many patients replied describing muscle aches and pains, weakness, fatigue and nausea in excruciating detail, and feelings of “being hit by a truck”, or feeling like a “limp noodle”, many described that the journey through recovery, while long and difficult, was well worth the trip. Many mentioned that being in contact with others who had been through the recovery process was valuable in that there was validation of how they were feeling and knowledge that they were not alone in experiencing a long recovery. Many reported that they were unprepared for the extended recovery time. There is not room in this newsletter to print all of the comments, so we will concentrate on encouragement and suggestions.
“After surgery, recovery of physical health was a good 6 months. I went to the gym (with a trainer) after 6 months to start to get my strength back very slowly. It was a good two years to get my strength and body back. Like I tell everyone, you have to be PATIENT! We think that we are “cured” after surgery but our bodies need months or even years to recover. You can not get frustrated. Take things day by day.”
“It took 8 months of physical therapy before I could walk without a walker. Physical therapy, using my computer, and the care and support of my wife and children were key to my recovery.”
“Recovery was very difficult at first, but gradually became easier over the course of the year. I needed at least 10 hrs. of sleep a night. I had no appetite and slight queasiness, which was hard but also helped me lose weight quickly. I credit the success to the slow tapering, and to some personal emotional work I did. I took St. John’s Wort for the depression, which seemed to help a lot. I no longer felt overwhelmed and felt more positive and hopeful. I began grad school during recovery and it was great to have something I was really interested in to devote my attention to.”
“Some things improved right away (weight dropped off) while other things took years to resolve (joint soreness, memory lapses). I used hot baths/spa tub for the joints aches, crossword puzzles for the memory (don’t laugh!), and was helped by good friends that cared and were patient.”
“When I learned about CRSF, I did not feel alone in the recovery process. It helped to know other people had gone through the process. In addition, my family and friends were very supportive.”
“There are days that are good and some that aren’t so good. When I do have the energy, going for short walks and stretching helps with the aching.”
“Cushing’s folks always want to be recovered overnight. For a couple of years I had persistent muscle weakness and some on again off again fatigue. It took me two years to adjust to my new personhood and lifestyle. I had to learn how to function without being driven by cortisol. That was hard. I had to realize that recovery is a process that takes a long time. I had to go into a new phase of my life and quit focusing so much on getting back to “normal”. I got used to living life in the slow lane. Over time I realized that I was growing into a new kind of normal. The two year recovery included much more than physical recovery. It included the psychological adjustment I made in letting go of the old ideas of how I “should” be and learning to appreciate the person I was becoming.”
“I got through it by thinking of things I wanted to do when I got well and things that I wanted to accomplish in the future. I also thanked God everyday! How lucky I was to be alive!”
“My doctors had never treated a patient recovering from adrenal Cushing’s. They said their books didn’t tell them everything, so I was adding to their experience. I had lots of withdrawal symptoms and not a very good disposition, either, as my husband and daughter would gladly attest to. The things that helped were casual visits from friends who knew I was having a tough time and were content to simply sit with me. I watched a lot of TV when I could stand the noise. My ten year old daughter often got into bed with me and we would lie next to each other while she told me about her day. Listening to music without any lyrics was also soothing. I learned to go through my body, beginning at my toes, and relaxed each joint, one at a time, using slow, deep breaths, until I was as relaxed as I could be. There was also another adrenal gland survivor at CSRF who emailed me almost every day. She helped me with the tapering off process and listened to me complain about how terrible I felt. She kept me grounded and kept me looking toward the full recovery that lie ahead.”
“I had a lot of pain. I was able to keep going with the process because I knew the end result would be well worth the work I put in. Mild exercise such as walking everyday, reducing stress as much as possible and lots of quiet relaxation time helped considerably. Faith, family and people who loved and supported me through this time, healthy eating, JointFlex muscle rub, Advil and corresponding with folks from CSRF helped me through this.”
“For me, recovery was much worse than pre-surgery issues. I did MANY things to try to help myself including physical therapy so that my body wouldn’t completely atrophy, I consulted with a Relaxation Specialist, Reflexology (great) and Acupuncture (helpful). I spent an inordinate amount of time with medical-related specialists. The stories on the CSRF website made me feel better about my issues. I realized that others suffered as much, if not more, than I.”
“I joined a gym with a pool and took a lot of Arthritis classes in the pool to help my joints. They ached from the lack of cortisol in my body. The gym and the pool got me back to where I should be”
“You must be patient and positive. Think positive and remember each day you will get stronger. Have faith, this is what has gotten me through these trying times. The support of those that had gone through this before me gave me hope. I don’t think I will ever be the way I was before but that is OK. I am here to complain about it. A sense of humor is always good!”
“Get lots of rest. Don’t expect yourself to accomplish what you used to do. Try to go on walks, for exercise.”
“Prayer and the support of understanding friends and family members got me through it.”
“What I found helpful were breathing exercises, being patient with myself, venting with family members and friends, distracting myself with fun things like buying and watching seasons of Grey’s Anatomy (that got me through the post-op period), making jewelry, listening to music, and getting massages when I could afford them really helped with the aching muscles.”
“I swam when I could…in the summer. However this was not always convenient…so I tried walking to build stamina. This helped but I really had to push myself through the pain and achiness.”
“You have survived Cushing’s, and you CAN and WILL survive recovery! There are so many odd changes and no 2 people are exactly the same, and there are so many things doctors do not mention. Recovery is basically your pituitary “waking up” from many years of not function correctly. It takes time and it brings many odd, and usually temporary, symptoms. For me, once I was finished taking hydrocortisone and my pituitary was again functioning, all these problems went away on their own, and I have never needed medication for anything since then. I kept a recovery journal. I had only a couple people I knew who had had Cushing’s, so I would talk with them to see what I was experiencing was “normal,” and I was blessed to have a very understanding and caring local doctor!”
“My recovery has been very good and not nearly as bad as I had read or expected. Having my three little kids around as a distraction and going to see a Psycotherapist during this time with all the emotional changes going on has been helpful.”
“My endo gave me accurate advise as to what to expect. When my cortisol levels got low enough, they no longer masked all the everyday aches and pains a 50 year old feels. This hit me about 3 mos. post op, so I mostly just hobbled along, keeping pretty active for someone in recovery. By the end of 9 months, that was mostly gone. I thought I was all better then, but I am now almost 4 years post op and I am still noticing subtle improvements. The first year is the most visible and dramatic, but depending on how long you were sick, you will be improving for a long time. I know weight loss is a huge thing for those in recovery. I never dieted, but ate the healthy diet I had eaten all the way through my illness. I had gained about 50 pounds total. I lost 30 pounds the first year, another 10 the next year and 5 the third year and 5 this year. I think I have dropped weight more slowly as it was linked the last 3 years more to my return to full activity, due to my gradually improving stamina and strength. The first year reflects the drop in cortisol levels. A piece of information that my Endo shared that also helped was that “It will take you as long to get better as you have been sick.” Recovery is not just physical, but emotional and mental. I had dementia with the Cushing’s and had stopped reading for pleasure a full 3 years before being diagnosed. Painting was difficult (I am an artist) then and I just couldn’t figure out why it was so hard for me. Anything that required decision making or multi tasking was out. It was a full year after surgery before I read my first book and started glancing at the daily paper again. Three years until painting was really fun again. My memory has also greatly improved. It is strange to be feeling younger each year as I am getting older. I know that sometime that this will reverse. I feel like having Cushing’s gave me a sneak preview on being 90. When I would run out of steam, it was helpful to remember the comment my endo made. Be patient and keep as active as you can. Also reading about other peoples experience was helpful. One thing I have learned is that every case of Cushing’s is different, but we can also learn a lot from one another and also support one another.”
“What helped was when people acknowledged my difficulties and showed understanding. My doctors reassured me that my suffering was a part of the recovery process and would pass. It helped me that they understood what I was experiencing, and had seen it before. It also helped to get medical information concerning the recovery process.”
“I wish someone had told me that I wouldn’t just come out of surgery, spend some time healing and be fine – like getting your appendix out or having a broken leg. Once I understand that Cushing’s patients are always Cushing’s patients it was much easier for me to adjust to my new limitations and stop waiting to be “normal”.”
“I was so tired that I slept for 10-15 hours a day the first 6-8 weeks. I was in physical therapy for a couple of months to strengthen muscles. I lost 100 pounds in 8 months after the surgery. I have low thyroid but no other complications. It was about a year and a half before I felt like I was back to normal. My doctors had told me that it would take that long and I did not believe them until I actually went through it. Family support and a wonderful medical team that was there to answers all my questions and concerns. I relied on the internet support groups too.”
“When I was in the hospital one of the nurses told me that she was going to tell me what no doctor would. She said I would feel like I had been hit by a train, and she wasn’t wrong. It is now 5 years later, and to all those going through the recovery, realize that it is difficult but know that it will come to an end and you will be able to live a “normal” life. The only medication I still do take is my anti-depressant, which I may add I had taken for years prior to being diagnosed with Cushings. Always remember during the recovery the good days will become more and more and the bad less and less. Don’t beat yourself up.”
“An afternoon rest. Lots and lots of mental games and activities. These have helped with language skills such as word retrieval, memory, delays.”
“1. Talking to other patients. 2. Going to counseling to cope with the grief of having this disease and the affect it had/has had on my self-esteem, relationships, etc. 3. Family support has been an immense help 4. Above all finding a doctor who truly understood and believed that I still had the disease.”
“Every day is a new adventure. A “Normal” or “Regular” day is a thing of the past. I am a Christian. My faith and my immediate family and friends support get me through each day.”
“Very long walks (which helped get strength back in my legs), long hot baths, writing to friends through the Internet. 3 months post-op, I took 50+ tai chi, aqua fitness and 50+ exercise classes (I was 42 at the time). I did not go back to my teaching job until 9 months post-op but I volunteered at school to get back into things and to try and get through the anxiety.”
“Being realistic about my limitations and truly believing that there was finally light at the end of a long, long tunnel; trying to be patient. I prioritized my activities to fit my energy level. Do the most important things first. I also guarded how many obligations I took on. Microwavable wraps with the rice or beans in them helped a lot with neck pain. I am still not back to normal but am still improving slowly.”
“Recovery impacts not only every aspect of my life but also that of my entire family. I could not have made it without daily hydro-physical therapy and whirlpool massage”
“Luckily I was 21-22 years old, so I think I bounced back more quickly than most people. After a year, I was able to hike to Macchu Picchu – a 4 day trek, so obviously, I was doing pretty well even on cortisol replacement therapy.”
“Recovery was the biggest challenge of my life, but worth every minute. I am 22 months post-surgery and I have my life back!”
Author: Karen Campbell, Director, CSRF (Spring, 2009)
Editor’s Note: Previously, we reported on Tapering Glucocorticoids Following Surgery based on a survey of our membership as to how they tapered off replacement medication. That article is available in the Recovery and Steroid Replacement category of Doctor’s Articles on this website and includes a summary of the time and range for recovery.