pain control 1.5 years after GBS

[virginiaRN 60]

On 11/28/2018 at 2:17 PM, FluffyChix said:

Ok, so sorry you are going through this and have to live with it. The worst thing in my opinion is always being on a level of pain where you can't sleep, move, etc.

But here's where I probably won't be popular, and I can only give you my story. And everyone is SO different and lives a different pain history.

In short, I have osteoarthritis, degenerative disc disease, cervical stenosis and sacral stenosis, bone spurs on my spine, hips, joints. etc, etc, chronic bursitis in both hips, a 50% ACL tear, and neuralgia 360 around my chest extending 8 inches + neuralgia in my hands/feet from hand/foot syndrome during chemo. And in addition I'm a stage 3c BC survivor on Femara (a drug that causes even more bone and joint pain). I've been on opiod pills, neurontin, tramadol, flexeril, nsaids, tylenol, pain Patches, pain gels, cortisone shots to the joints. Oh and now I have a Parkinsonian trimmer in my head and hands from the radiation/chemo--so it causes constant muscle tension cuz I trie to keep my head/hands/shoulders from shaking deep inside my body.

I used to not be able to sleep longer than 1-2 hours at a time before waking from pain and unintentional movement. I still sleep in a recliner. And every day I woke, I'd wake in at least a 6-7 pain level. I would not medicate until it was an 8+ to 10 cuz I hated the side effects of the drugs. And now that I had surgery, most of that or a lot of that is off the table.

Here is what finally helped me.

1. Adjusting my diet to be as clean as possible. (Every time I eat beef or pork, I wake the next morning 20 years older... Every time I have carby carbs like grains--pain so bad I feel 80 years old. Every time I drink any kind of alcohol other than a little red wine--pain like cray. cheese and dairy is the same way unless it's very very small amounts of reduced fat or fat free dairy.)

2. Started doing severe calorie restriction, then IF and that reduced the pain ENORMOUSLY! Like...magically.

3. Lose weight. I think my doc gave me some number like: for every 15% of body weight you lose, you reduce your pain level by 20-30%?

4. Get PT and then do the frickin core strengthening exercises religiously. (I'm slacking on this! But I can tell when I do them and when I don't. The difference in pain level is a magnitude of 10 with v. without.)

5. Walk daily. Daily. Even when I don't feel like it. Even when it hurts. By the time I'm done, it always hurts less.

The best thing I've done is lose the weight. I can do things now without pain meds that I never thought I could or would be able to do. My goal is to get to 125-130lbs to take off as much extra stress as possible and improve my pain level as much as I can. I think the pain meds caused a continual cycle of spring-back pain (forget the name of it). So it was like a self-fulfilling prophecy. Because I medicated, I would have more pain at the end of the cycle and need to take more meds. And because I medicated, I'd built up a tolerance and needed more and more meds to help. Now if I absolutely must have one, it takes maybe 1/4 of the amount it used to take. I now wake only in a 2-3 and end of day is usually only a 4 which is entirely manageable for me.

Some meds that play well together and amplify their effects:

1. Gabapentin + Tramadol together

2. Tramadol + Tylenol together (this one is especially good)

3. Norco 10/325 + Flexoril (last resort med)

Lastly, this is the killer part. (Sorry in advance...and you can only do what you can do--and only you know how clean your diet is and if you are eating low cals.) If you are 5'5" and 178lbs and female, you still have some fluffy slush to get rid of that absolutely would help reduce the pain level. I wouldn't say that if I didn't feel the difference in myself. It was night and day relief.

I'm no longer on any pain drugs. And the only scripts I take are my Femara, thyroid, and omeprazole. I walk daily. I try to do strength training 2-3 days per week as much as I'm able. And I can actually "fast walk"/jog which I never thought possible. It's now been 1+ year since one of my cortisone shots and about 6+months since the other and I'm holding up really well.

I hope my story helps you. I'm sorry for going on about myself. But I just think, if it was possible for me, how many others would/could benefit from it. The freedom from drugs is really just a great gift of this surgery and lifestyle.

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, you are at high risk for dumping syndrome. I experience extreme dumping syndrome--bother 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!

[virginiaRN 60]

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, 2018 by virginiaRN
typo

[virginiaRN 60]

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, 2018 by virginiaRN

[JessLess 1,163]

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.