Hi Folks. Question that you all may or may not have run into. I had roux-en-y GBS 1.5 years ago. Lost almost 100 pounds. That is going well. I have some chronic back issues (degenerative disc dz in lumbar and cervical region) and have done all the injections, radiofrequency ablations, epidural blocks, etc., that I can manage. Pain persists, but ortho has stated it is not appropriate for surgery. To be fair, I wasn't really going around hunting down someone to operate b/c the idea of back surgery is not exactly thrilling to me, having taken care of the post-op back surgery patients in home health and with the back surgery success rate of 50%.

Prior to surgery, I was able to take NSAIDs and certainly took my share. My surgeon stated no way on the NSAIDs. After me badgering him, he allowed me to take Celebrex 100mg twice a day along with Nexium 40mg once a day. I did this for 3 weeks. I ended up with a peptic ulcer which had to be treated for a month with a multiple medication cocktail. It was not fun. The ulcer was way more painful that the neck and back pain I originally had. For a while, I managed on regular or arthritis-strength OTC tylenol. Then, my pain management doctor rx'd Vicodin, which is never a good long term solution. So, I took it, with the knowledge that I shouldn't take this long term. I've dc'd this myself and I am still in pain. Also prohibited by my GBS surgeon are oral steroids (prednisone, prednisolone, etc.)

FWIW, I have unsuccessfully taken Cymbalta, Neurontin, and a few other neuro-type drugs. I take Lexapro for moderate depression. I can't take a number of meds also because of my epilepsy history from the age of 9. Oh, and I maxed out my chiro benefit this year (20 visits.) Out of pocket, chiro is $70/visit and the chiro wants me there twice a week. I have expressed that I really loved his services but I can't afford $140/week. I used to get 90 minute deep tissue massages about every 10 days, but my therapist moved far, far away and I've struggled to find someone even half as good. Currently doing epsom salt baths, Tylenol, and heat and or cool packs. Normally, I'm good but unusual activity types usually throw me over the edge. (This weekend had a house flood which entails me and my family moving lots and lots of things from one area of the house to another.) I've even done acupuncture, but the cost was prohibitive ($900 for 3 treatments.) I even have my own TENS unit and foam rollers. I do some strengthening and stretching exercises on my own, which helps too.

I need to find a better solution for pain management. Anyone find solutions and/or good providers who have a handle on this? I will travel to see someone good. Thanks in advance!

1 minute ago, virginiaRN said:

Thanks for such a long post! You are too kind to take you time to post this.

Actually, I am familiar with many of these points. I am an RN and am graduating in 13 days with my Master's in Nursing and will sit for boards in less than a month to be a Family Nurse Practitioner. In my clinical rotations (Internal Medicine, Family Medicine, Ob/gyn, even Peds), I give my patients talks about eliminating simple sugars out of their diet.

In fact, I did my capstone project on the Medical Management of Bariatric Patients, and in addition to the inflammatory processes that simple sugars inflame, we are at high risk for dumping syndrome. I experience extreme dumping syndrome--both early and late dumping syndrome. Early--from the simple sugars (for example, if I would ever eat like a cookie or half a cupcake) and late (from high fat, like bacon or fast food.) I have had my gall bladder removed so it exacerbates the late dumping syndrome more than someone who has their gall bladder.

I'm a stage 2b breast cancer survivor and couldn't tolerate Tamoxifen for a variety of reasons. So, against my doctor's wishes, I had to d/c that med a few years ago. They wanted me to take it for 10 years. I couldn't even tolerate 18 months. I ended up on 13 other meds to ameliorate the s/e caused by the Tamoxifen. Then I had to have a salpingoopherectomy (hysterectomy but left the ovaries so I wouldn't go into premature menopause.) I am quite familiar with the troubles of Femara--my mom took for a while and was MISERABLE.

I have the same experience with wine--it causes me pain too. I don't even bother anymore. It's unfortunate but it's just the way it is.

I don't know about the actual percentages of for every x y z pounds you lose, your pain is reduced by x percent. I'd love to read the research on that. If you happen to ever get the citation, please post or msg me. That is a powerful statistic that I would love to use with my patients I see in clinic. It would motivate them to get moving on weight loss.

Nonetheless, I am continuing to work on my weight loss, having lost 100 pounds so far. Exercising is more sporadic now, especially in the last days of my MSN wherein I'm having to submit so many papers, assignments, take finals, etc. Terrible excuse, but it's my reality nonetheless. I do what I tell my patients to do and get up and march around the house for 10 mins multiple times a day, when I'm not at clinic. And/or walk outside when it's not 29 degrees here! My husband is runner who runs at 7 mins/mile (old guy now who used to run 4min/mile) so when he walks we me especially, he keeps me on a good pace.

As you probably know, weight loss and eschewing alcohol are the two major actions you can take as a breast cancer survivor to prevent a recurrence. There are numerous studies on this and I can post if you would like. (I'm in the last few days of coursework and working like a dog to submit assignments, study for finals and boards! So this moment is kinda bad, but soon!)

It sounds like you have been through the ringer and I appreciate your post. I'm off all pain meds. I have muscle relaxants that I can use for spasms but I don't use them that much b/c of s/e. The one muscle relaxant that doesn't cause sleepiness is Lorzone, but it's not that effective. I have never had a prednisone shot, although it's sounding mighty enticing. My concern about that is the same as with my patients. It raise blood sugar, puts you at risk for fungal infections, etc. I'm not a big advocate of prednisone injections in general.

Thanks again for your post and I will continue my Quest to continue to lose weight and very SOON be able to up my exercise even more that my paltry amount. The rebound pain is real with NSAIDs (which I cannot take anyway, as all of us with GBS) and the endorphins released by exercise (and sex, btw!) are inimitable!

Keep up all your great work!

Oh yes, and I forgot, I, too, have that horrible tight and painful feeling around my chest from my b/l mastectomy. Very little has been researched to manage this except for massage and dry needling (and stretching!) Ugh. I know the feeling though!

Edited November 30, 20187 yr by virginiaRN
typo

On 11/28/2018 at 3:40 PM, mylighthouse said:

Hello,

I'm sorry that you're dealing with chronic pain. People have responded to your post with some good information... it's always good to hear other people's experiences.... especially when you are in a position like yours. When you are dealing with long-term chronic pain, it can be depressing... you get to where you feel like NO ONE understands what you are going through. A lot of people do not understand, because they haven't had to deal with chronic pain before. Speaking from my own personal experience, it is easy after years of chronic pain to feel hopeless because you have tried so many medications, etc, etc, and nothing helps. Not to mention all of the side effects that may occur from taking these medications, drug interactions, etc etc.

My story.... I'll keep it short (haha... I'll try). Had a colon resection in 2015 that kept me in the hospital for 2 months! It was my first "open" abdominal surgery. Over the last 6 years, I have had 7 abdominal surgeries, 3 "open". I have terrible scar tissue/abdominal pain. I know my surgeon cut away some adhesions when he repaired my incisional hernia. Several months after my colon resection, my surgeon told me that I may need to stay on Tramdol the rest of my life. Here I am 4 years later and I'm still taking 300 mg of Tramadol a day.

My current med combo for pain only is Tramadol, ES Tylenol and Gabapentin. The Gabapentin worked for awhile, but one time when I was in the hospital a few months ago, they thought I had a bad reaction to it. It turned out that my sodium level had just dropped like crazy and it was causing probs. So I temporarily weaned off Gabapentin before they pinpointed low sodium being the problem. Now I am back up to 1800 mg of Gabapentin a day, and it does not help much. When I saw my surgeon yesterday, he said to talk to my GP about increasing the Gabapentin or trying something else, like Lyrica.

Ideally, I would love to be med free as far as pain meds go. I spend most of my time in bed. Exercise makes my pain worse. Fluffy had some really good insight.... I think exercise is great, but I guess in some chronic pain cases, it may actually make pain worse. I definitely think you need to give exercise a shot and see if it helps. I also can attest to the fact that carrying around extra weight can make pain worse.

I also use some salves/rubs for my scar tissue/nerve pain in my abdomen. They help ease pain temporarily. The other thing that I've been trying for 3 months now is CBD (no THC). I take a CBD tincture under my tongue twice a day. I also have a CBD vape. You see what I'm saying? When you are dealing with chronic pain, you are willing to try different things... I'm not gonna lie, sometimes I feel desperate. BUT, it can be dangerous too.... there are things out there that may be "natural" products, herbal supplements, etc, that can be harmful. I try to research things before I buy them.

I hope that you can find something that will help you get through the pain issue. In the meantime, remember that you're not alone, as you can see from the response of others here. It is nice to know that others can understand or somewhat understand what you're going through, isn't it? Afterall, we are human and knowing that others can identify in some way with us actually helps "lift" our spirits a bit. At least I know it's helped me. Good luck and keep your chin up!

You have REALLY been through it! I totally get where you are coming from about feeling desperate. I live in an adjoining state to 2 states where medical cannabis is legal. Alas, it is not where I live. Absolutely agree with you on the "herbal supplements" and danger. When I am getting a history, and medication list from my patients, typically they leave out the herbals. So I have to ask, sometimes multiple times before they tell me. Sometimes they wait until the end of the appointment. And I'm like, "ahhhh, you are taking gingko biloba. That's why your warfarin isn't working correctly! AHA! Let's talk about this."

I appreciate your post and hope you get some relief in the meantime. I'm so sorry you are feeling so bad. I really hope you find some solutions soon. I'm not your provider and wouldn't want to offer medical advice over the internet (illegal for me!) but I reallllllllyyyy hope you find some help that assist in living your life. That just really blows to be in that much pain.

Edited November 30, 20187 yr by virginiaRN

A large part of why I got sleeved was to lose weight to reduce my lower back pain. I work in an office 4 days a week and even with a stand/sit desk, my back pain is bad enough to make me dread going to work some days. I have been out of PT since my surgery and I think that has really made things worse. I'm going back next week.

I'm team PT, Salonpas Patch, walking, massage, ice/heat and Tramadol.