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Living With Fibromyalgia - Online Support Group

Fibromyalgia pain or just plain back pain?

#1

Hi everyone! Just an introductory posting. I’ve recently been diagnosed with fibromyalgia, which has made a lot of my pain symptoms make sense. I’ve had pain for years, but no one addressed anything except my lower back pain. Physiologically, I have lower back issues, such as spinal stenosis and herniated discs. I had surgery last year and the leg and foot pain got better. I started having foot pain again last fall, so my orthopedic surgeon referred me to a foot and ankle orthopedic specialist and a rheumotologist.

I haven’t seen the orthopedic specialist yet because as soon as I saw the rheumotologist, she diagnosed me with fibromyalgia. All 18 points are active per her examination.

I’m trying to be more active by walking three times a week on the treadmill at a local gym. So far, if I get to 10 minutes without my back going into spasms, I’m doing good. I can’t push it too much because I still have to drive myself home.

I’m also being treated for PTSD, MDD, and anxiety, so I’m on a tremendous quantity of prescription drugs. I get nervous when someone recommends a supplement because I don’t know how that would interact with my drug regimen.

I’m currently reading “FibroWHYalgia” which is talking about eating better and exercising more as treatment for many of the symptoms. While her recommendations make sense, I’m really struggling with the exercise part. I just can’t do a lot without severe pain starting up. It’s mostly in my hips, lower back, and over my SI Joints.

Anyway, this is who I am and what I’m struggling with. I haven’t given the whole list of issues because that would make this post three pages long. :grin:

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#2

Hello to you, Pained One. I am so sorry you are suffering so. I hope to offer you a little help about exercise. Forty years ago I would have totally agreed with you about not being able to exercise with back and for me, hip pain. I found that the physical therapists at the time were far too rough, being used to sports injuries to athletes, not tender people like us. I also found that the person who knew best about how to help me move was me. Lots of activities that worked for others didn’t work for me. I definitely recommend tai chi, because it’s gentle and peaceful and helps calm you, but you may very well have to adapt the movements to your own capabilities. The best advice I ever got, off another FM site now sadly defunct, was to stop just inside your tolerance. move a little, see if it hurts, and if not, STOP there. Wait a couple days, or however long it takes you to flare, and if you don’t get a flare, try again. Stretch don’t push a tiny bit farther every time as long as you don’t have pain. Walking works for me, it may not for you. Certain yoga postures- highly adapted for your condition!- may help you stretch a teeny bit.
I now exercise 45 minutes daily, mildly, in 3 separate segments starting with tai chi/yoga first thing, and going on to walking, with light weight lifting every other day. I’m retired so I don’t work, but I can do most of my housework, all my errands, get together with friends and family, most important MAKE PLANS and carry them out. I believe most people can feel better if they can move, we are meant to move after all, nature made us to walk, to run, to bend to pull up roots or reach up to pick fruit. But for those of us with disabilities, we have to find our own best route to our best life. I wish for you the strength and the perseverance to find that road for yourself, with all of us on the sidelines cheering you on. Best, Molly94

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#3

Hey, it’s not fun but the exercise and food things are hugely important. What I am writing has helped me more than I can even describe in a response. It’s worth thinking about for anyone with fibromyalgia.

Please know that anything I write is without judgement. You’ll get there your own way if you take the first step - which you already have and that is thinking about it. Think about the exercise you might enjoy, the foods that maybe make you feel a little better or a little worse the next day. A year of effort will pay you back 3 years of making life easier.

You wrote, ‘I’m trying to be more active by walking three times a week on the treadmill at a local gym. So far, if I get to 10 minutes without my back going into spasms, I’m doing good. I can’t push it too much because I still have to drive myself home.’

I have no idea what it is like where you live, but perhaps, if it is plausible, walk 10 mins away from the house and 10 mins back. Leave the sitting in a car and the traffic part out of your routine. that’s usually just added stress. Could you cycle where you are? Maybe something to aim for if it’s doable. Walk to someplace you can swim :slight_smile:

As for food, lost of things affect anxiety - nothing more than tobacco and alcohol. After that, sugar - refined sugar is the worst but then the simple carb sugars come next - that includes the sugar replacements too! So try and get to a point you can be strict about sugar. If it says it has it, don’t eat it or drink it. if it’s white bread, pasta, flour or potatoes, leave them alone too, you will feel better in just a few weeks and in 2-3 months you’ll start feeling much better. You will still get pains, but they will be better.

Then look into CBD and cannabis if it is legal where you are. If you look for CBD, Whole plant has worked best for me. Also, might be worth discussing Amitriptyline with your doctor. Yes it is a pharma drug, but if you are careful with it and don’t have too much or stop abruptly it can help, short-term, with the fybro and the psychological problems you report and help you change more easily the diet and exercise you do…

Important note: What you can’t manage today, isn’t a problem but it’s so true that whatever you do push yourself to do (every day if possible) will pay you dividends. That goes for food and exercise. Good luck

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#4

There are some indications that exercise may not always be the right solution for fibromyalgia symptoms. Here is what I know. I benefit from light exercise and light stretching but get worse with too much exercise. The PACE trials which is what they base the current exercise recommendations on are riddled with errors and I personally know a journalist who is actively working to get the word out on that. Also, based on your symptoms, it may be that you have also been floxed. This means that your feet trouble may be due to tendinitis from flouroquinolone antibiotics like Cipro, Levaquin, etc. If you suspect this is so, please report it to the FDA and also do not let them give you any cortisone shots as these can make matters worse. I thought I had fibro for years and maybe I do, but am feeling like it is more likely that I was floxed multiple times beginning many years ago. I wish you well in any case as I know how challenging it can be. Hang in there.

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#5

Hi painedone​:revolving_hearts: I know how your feeling and I just want to share just a little with you my own experience, but you might have to experience a lot like I did, because I was hard head​:cry: I found out I had fybromayliga 6 years ago, I was desperate for a quick fix, I had a career, worked out every day, I had a life of always being on the go, so with this hitting me I tried all the medications, went to pain management classes, psychologist, a good fybromayliga doctor added injections, I mean by the end of that first year, I had to stop working because I couldn’t concentrate, I was looking like that movie, “The Living Dead” I slept all the time, I was hallucinating badly, by the time I knew it, gained over 40 ugly pounds and was depressed but after depression really hit me hard, and along with all the side horrible side effects there’s one I still have till this day is the ringing in the ears, and doctors have told me it will never go away, they say but I believe in miracles, so please, read anything you take to see if there side effects include nringing in the ears, that’s not a joke! Since I had to stop working, I started attending our Bible studies and I meant ladies that had fybromayliga, I did listen to one of the ladies story, and I so blessed that I did because I’m off all 14 medications since then, it’s been 3 1/2 years, I take all my vitamins, drink green tea, I found a park by my house that has a gigantic in door pool and attend it 6 days a week, the Aerobics Swim class has helped me so much, one hour but I stay longer to chat with all the lovely ladies, all ages that can relate to my pain and we become a very beautiful family, I love them all, some take medications, some take CBD and cannabis, I tried it, I hate it, I went back recently to Amitriptyline, for my muscle spasms, which brought the ringing louder so I got off for good and was suffering until a lady in the pool told me about Restless leggs from Walgreens, I stop right after that and pick me one up, and works wonders, I sleep better now, woo hoo!!! I gave up sugar, carbs and coffee completely and lost 31 pounds, I have some to go but I feel great, some days I over work myself with cleaning house, especially yard work which I love being outside doing, but I’m almost there, where I’m learning to listen to my body, take my short breaks, enjoying the moments, will make life a little bit better, than having a flare-up. Last year my right foot got so inflamed, they xray it and said that bone in the side is inflamed, I used a lot of ginger, sometimes my stomach gets upset, that’s good to have around, but turmeric I use a lot in almost everything, and real good for inflammation, but found out my sandals and flip-flops were irritating that bone in the side, even my tennis shoes, so they were all given away an invested in some comfy ones, it’s about being comfortable, not pretty anymore for me​:sob:read up on things, tried it once or twice and go on to the next. Your the only one that knows your body real good, and one more thing, I was always the yes person, not anymore, because alot of times I stressed out that I said I’ll do it, it I’ll be there, and that leads to STRESS, we don’t want that, that’s a big no-no, so now I say so I don’t hurt the person, “my heart says yes, but let’s see what my body says” and I’m in peace about it, that’s what are life should be about, peace, no drama and live, love life for the moments :heart:Take care and you’ll find yourself through this, eventually we all do. I have a couple of girlfriend s that say they can’t give this or that up and I see them suffering, I’m sorry I don’t want that anymoe​:smiling_face_with_three_hearts:

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#6

Thank you for your recommendations. Do you do tai chi and yoga from watching it on you computer? Can you recommend any Youtube videos? Neither class is offered at my gym. I’m in a small city so there aren’t a lot of resources.

I also have the severe hip pain which is part of why I’m trying to walk more. I know better than to do weight lifting right now because I’m just too sore all the time. I hope to add light weight lifting to my regimen at some point.

Thanks you for your best wishes!

#7

Thank you for your response, NODJ. I live in a semi-rural area near a very busy highway. I had considered walking in the area, but it’s just not safe enough that I’m comfortable with that. Hence the gym membership. We have a pool, so I do water exercises and swim when the weather is warm and we have the pool open.

I’m trying to quit smoking and I know that will help. Cannabis isn’t legal in my state, which is a sad thing. I self-medicated for years with cannabis and it helped me more than my current drug regimen is.

Thanks again for all the recommendations.

#8

@Wendita38, thank you for your reply. I have taken any of the antibiotics you listed, but I will look into you recommendation. I’ve had multiple cortisone shots in my back, but none in my feet.

@Chicky55, thank you as well for responding. I’m on 10 prescription meds right now, but am starting to be weaned off some of them. What vitamins do you take? I’m working on relieving my stress levels as it is because it kicks off my anxiety. The PTSD and MDD create some mental issues that make it difficult to know what is being caused by the fibromyalgia (depression and anxiety) versus what is being caused by those two problems. I know it will get better, I’m just in a bad space right now.

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#9

I don’t know the state but I would think that CBD is most likely legal - if you didn’t know CBD is the non psychoactive element of cannabis that relaxes the muscles. Vaping it is a great way to give up smoking and get some health benefits. It’s legal and it works, you will likely need a high concentrate of 1500mg in 30ml - as I said, search for whole plant CBD - all the best - I envy you having that pool :slight_smile:

#10

Pained One - hang on. I’ve had fibro for 40 years. I am 75. I managed it with Cortisone (doc said choose between quality with cortisone or quantity of life without) The cortisone helped immensely, BUT it causes osteoporosis so cant take any more. I also took a narcotic, Norco, which also helped. New dr. has removed that and I am on LDN, low dose naltrexone 4.5 mg high dose of 300 mg gets people off heroin and alcohol I had some nerves cauterized in my back 2 years ago and that helped, but new dr. did it again last week and I have been almost bed ridden since then. None of my OTC drugs help. I can barely walk or dress myself and I have blurred vision. Seeing eye doc next week and cancelled the second RFA. As others have said, listen to your own body. If it hurts too much to do a certain thing, STOP.
I also have pushed myself to garden, help others, lift too much, etc. and now I just have to do very little, try to walk and stretch, try to get more sleep and eat better. Listen to your own body and good luck.

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#11

Hi again Pained One, I use David Carradine’s AM/PM Tai Chi for Beginners, I actually own the DVD but you can certainly stream it, I just checked.
Re walking, my neighbor goes to the mall in the winter and does the local community college track early in the morning, summers, because she’s not comfortable on our sidewalk-less streets. I don’t know if those are options for you.

I will not say anything about smoking except that I did it for 10 years, quit nearly 40 years ago and still suffer from asthma, chronic bronchitis, sinusitis. Consider that encouragement to stop from someone who’s been down the road. My doc at the time told me not to worry about gaining weight, a little extra weight was safer than smoking. I quit just before the injury that wrecked my hip so I was able to take up jogging instead, I know you can’t do that. But I am cheering you on! Best again from Molly94

#12

@NODJ, I believe CBD is legal here. I thought I had seen a sign for it and someone else commented that they’d seen the same sign. I’ll check with my doctors and pharmacist to make certain nothing I’m taking will be adversely affected.

@carolyn, I’m facing nerve blocks in my back and it’s scary to be honest. I’m trying to learn when to stop and to not push myself too hard.

@molly94, we don’t have a local community or enclosed mall in our small city. The one mall is a strip mall and I have walked back and forth on their sidewalks. The weather is too hot in the summer and too cold in the winter for that to be a long-term solution. I don’t mind paying for the gym.

#13

I tried CBD oil. It made me very nauseated so i got rid of it --thanks for thoughts !! :slight_smile:

#14

I also ave the same issues as you
I have start Epidural Injections 2 years ago, every 6 weeks, it will last up to 4 weeks. I can’t sit more than 1 hour.
I have attended Mindful Living Program very helpful, also have read Full Catastrophe Living
I vape and eat CBD and THC which will motivate me to do my chores
I have a feeling I will require Back Surgery
Try to stay positive and keep moving the best you can.
Regards Whitey

#15

Thanks for your recommendations, @Whitey! Best of luck to you with the back, hip, and SI joint issues. It really can drag you down.

#16

Please tell me the operation procedure you had done, through the back or through the side? Have the sharp nerve pain gone away?
Did you the pre-op therapy?

Whitey

#17

Before the nerve block ask your doctor for some Valium, take 1 hour before the procedure. Breath in through your nose and out through the mouth, Don’t hipper ventilate.
Mindful Training Way
Whitey

#18

Hi Pained One,

I am a retired /disabled physical therapist (disabled from Major Depressive Disorder (MDD) and fibromyalgia, who also has chronic back pain. My MDD keeps me from doing much exercise, but I’ve started walking (in my safe neighborhood) and I know from my training that that will help with the back pain eventually. I used to do a warm pool gentle exercise class (there are “therapeutically warm pools” around, if interested you can google that phrase and your county or city name to see if there is one near you; they are intended for use by arthritis patients, and they are super for fibromyalgia and back pain patients, since they feel so good to be in because they are much warmer than a typical pool, and thus it is easier to move in them). I did recently stop the warm pool class due to my depression and it being pretty far away, but I may go back, and it certainly was helping the fibro pain, my back pain, and my mood.

The bigger reason I decided to reply to your post is that I am also on a lot of prescription drugs, and I do highly recommend trying a couple, and cbd capsules or oil. I personally don’t worry too much about being on prescription meds for depression and pain (and a couple of other medical conditions), as I know they help me. If I went off my antidepressant and meds for fibromyalgia, I know I’d be in big trouble. Anyway, the drugs I recommend you try are: 1. lyrica, for the fibromyalgia pain; 2. low dose naltrexone, usually prescribed at 4.5 mg for fibro and chronic pain; 3. tylenol (which is an innocuous drug for pain but really helps me); 4. cbd capsules (or oil). With the lyrica, tylenol, low dose naltrexone and cbd capsules, I was able to get off opiates for the fibro pain. I might recommend you try the naltrexone and cbd and tylenol first, as the lyrica does not work for all and takes a while to get to the therapeutic dose. The low dose naltrexone has helped me hugely, it is a relatively new med and your rheumatologist should hopefully know about it if she treats fibromyalgia. CBD is legal in every state, and I buy it off the internet now; let me know if you would like any recommendations on the brand and dose. Both the low dose naltrexone and CBD oil have helped me greatly with my depression, anxiety and sleep as well as my chronic pain; I can’t say enough about both of these meds (of course the CBD is not a prescription drug).

I wish you the best of luck! Oh, I went to pain specialists at Stanford University who said that back pain is extremely common in fibromyalgia patients (I think almost all with fibro have it, and that it is usually the worst symptom). They also told me about Cymbalta, which is an antidepressant which also helps with pain, so that I ended up switching my antidepressant from something else (I’ve tried so many) to Cymbalta. It’s hard for me to say if the Cymbalta ended up helping with the pain, since I was also using lyrica and opiates at the time, but that’s what they said. They also said that depression is very common in fibro patients. I really feel for those of us living with both MDD and fibromyalgia , since both are so difficult to experience, and of course can influence one another. Take care; I hope these ideas may help you!

Jean

#19

Too All
I can’t believe how we are all very similar with systems and meds
Has anyone had surgery on there spine? How was the outcome?
This is my of meds:
Gabapentin, Cymbalta, Cyberbenzine, CBD, Sativa, Indica, in oil & Vape, Ependrial Injections every 6 weeks 7 months
Whitey

#20

@whitey, I had an Anterior Lumbosacral Intervertebral Fusion, ALIF. They go through the front to attach some of the hardware and then through the back to attach the rest of it. It helped tremendously with the leg and foot pain I had. Unfortunately, the foot pain is back, but not nearly as bad as it was. I did have therapy pre-op, but it didn’t help any.

It looks like the nerve block is not approved by my insurance, so that will not be happening soon.

@fibrogal, another MDD sufferer here! I did take Lyrica years ago (2003) without any help for my back pain then. I haven’t taken it again to see if it would help now or not. I’m on gabapentin, baclofen, Cymbalta, quetipine, trazadone, venloflexine, Abilify, Wellbutrin, busperone, an allergy pill, and extra strength Tylenol throughout the day. The Cymbalta was for the fibromyalgia pain, but it’s in the same class as the venloflexine, so I’m moving down on one while moving up on the other. Hopefully I’ll see some pain relief soon. I haven’t been on opiates other than for my surgery, so maybe that’s part of the problem. I’ve just been is suchy pain for so long.

I see my pharmacology practitioner this week and will talk to her about the cbd oil. Thank you for all your help, Jean!