Fibromyalgia pain: Let's connect

Not sure where you live, I am not getting morphine as of about a month ago. I took 30-45mg a day for chronic pain, now taking 100mg, 3 times a day of Tramadol, along with muscle relaxers, etc, etc. Along with fibro, back problems, arthritis, bad knees and left shoulder i have nerve damage in my lower right abdomen and pelvis which shoots between my legs.
I would think you could get pain relief in some medication still. It really sucks that pharmaceutical companies, Dr's and some people took advantage of opioids to screw it up for the rest of us.

@anniebrook It sounds like daily tasks are difficult. Just because you are educated about depression etc, does not mean that you are immune to it. Everyone needs help to put changes in motion, just as you helped people in the past. You said that you were going to get out and walk more. I'm wondering if you have considered making a small goal each day? An example of this is the goal of walking 5 minutes per day. Is this an obtainable goal?

I agree that others have taken advantage of the pain relievers. I use to take just 1 pill a week to help me out but now there is none. I feel for your pain

I hear you... my pain management counselor suggested getting a heated throw. I bought this one from Amazon. Beautyrest Plush Electric Throw Blanket – Secure Comfort Technology-Oversized 60" x 70"-Ogee Pattern in White-Cozy Soft Microlight-3-Setting Heat Controller, 60x70. It is so silky soft and very light weight. On my 'hurts everywhere even my false teeth' days, I take to the recliner and spread this over me. The warmth is soothing and doesn't require constant moving like a heating pad. Bought it as a birthday gift to myself. Maybe an early Christmas present?

@torpedo Welcome to Mayo Connect. You are with a great group of people who understand the struggles of everyday living with chronic pain of all kinds.

Like you, I deal with fibromyalgia pain almost daily. Some days it is hard to differentiate between that and other side health issues! Our cat seems to know when I need her little hotbrick of a body next to me, and will curl up to offer me comfort in her own way. I also take 30 mg CBD daily to blur the edge of discomfort.

What medication did you used to take, that you no longer do? What is your go-to way to handle the pain on a daily basis now?
Ginger

@mhugs that throw sounds lovely . I too have fibromyalgia long time sufferer . I use ice first to calm the inflammation then heat . I may have to look into this on Amazon . A hot shower also helps immensely

@torpedo I want to add my welcome ,late, not on this often ., I have about the same pain as most people have but in different areas We are all pain warriors and because the powers to be cut our meds to us who really need them we have to find alternative things like Ice is a great way to get rid of edema in the tissues and is also a anti inflammatory fighter like Turmeric is I use Golden tea 2 times a day , Heat is wonderful as it being the healing to that area whether by heating pad or a hot shower . Just some tips . Find what works for you and gives you comfort . CBD during day also

Erica just added me into this discussion! I have suffered from FBS or Lyme the last two and ahalf years. A doctor in North Carolia recomended I may do research on FBS!
As for the pain, My first episode two and a half years ago was a server Headache and Neckache! Went down hill from there! As someone said there are days when I can barely get off the couch!
FAtigue, muscele ach, dizzeyness, brain fog, balance, and so on.
I have problems with my right hip. My doctor gave me a script for Oxycodone some time before, in between my steroid shots every 90 days.
Happen to have some pain towards the end of the 90 days two years ago! I took two Oxycodones one day and then the next. All of a sudden my headaches went away. My PCP is neat! He said it was ok if it helped me! So I have taken two and a half for the last two years and it helped!
I get tired of people saying you're going to be a Drug Addict! The state, the pharmacy, and my doctor watch me very close! I can't refill my percription more than three days out when it is do!
Let me know if anyone has any recomendations on readings for FBS.
Thanks,
Sundance (RB)

Hello Sundance,
I read your post and I've been trying to decide how to answer it. I am concerned on a few levels about your FBS journey.
I certainly am NOT a doctor or involved in the medical field.
What I am, is a person who has lived with FBS for DECADES.
I know there are things you do not want to hear any more, but it would be remiss of me if I did not put in my two cents.
Please take what I say as a person who is concerned for you and who has had personal experiences similar to yours.

As I mentioned above, I have lived with FBS for decades.
First, let me say that Oxycodone is a VERY addictive drug both physically and mentally.
Even after 2 spinal surgeries, my surgeon was VERY cautious about prescribing the drug and frankly I was concerned about taking too much for too long.
Just because your doctor prescribes something does not mean it is the correct.
All you need to do is turn on the TV to see how many people innocently started taking the drug and wound up overdosing or becoming dependent on it.
What happens if you try to not take it?
Have you had to increase your dosage over time as the effectiveness changes?
These are signs to be concerned about.

I am happy to know that your doctors have been waiting at least 90 days for your steroidal shots.
I have been to several pain management doctors and they ALL agree that we shouldn't get more than 3 to 4 shots a YEAR.
However, they do prefer 3.
Too many of these shots can have an impact on the strength of your bones.
I hope your doctor has taken xrays and/or MRIs to determine the exact area(s) that need the injection(s).
I also hope the shots are working.
I did find, for ME, that the shots did not work for more than a day to 1 week.
At that point, my doc and I decided it was not worth the possible adverse impact on my body for such a short return.

So here is what DID work for me...
Sadly, I did not have the luxury of staying in bed when I had a bad flare up.
I had a hubby and 2 children to raise and I was also a full time college student.
My plan had several components that helped....
1. Exercise-when I began to exercise, it was just walking. Everyday, I would walk. At the beginning, my hubby would literally have to drag me. I had so much pain and fatigue, I couldn't get my body to work. Eventually, I was able to not only do it on my own, but I was able to add other kinds of exercise, including strength building, to my workouts.
2. Weight control... I needed to lose weight to take the pressure off my body. For me, at that time, it was joining Weight Watchers. It was VERY slow, but it helped.
3. Aquatic Physical Therapy... Land therapy was too hard on my joints so I found a great place for aquatic therapy. Not only did the warm water feel good on my body, but it made exercising and stretching much easier.
4. Chiropractor... I saw a chiropractor 1 to 2 times a month (at the beginning).
5. Theraputic Massage.... This was a life-saver. I went every other week for quite a while, then every 3rd week. I still do this. I just have to remind the person doing the massage that I have FBS so that they don't inflame me.
6. Meds... This probably showed the quickest improvement. I was given a low dose anti=depressant (not an anti-depressant dosage) to help get me into a deep sleep. Deep sleep is so important. It is the time our body heals. People with FBS do not get into deep sleep. It is not only the reason we have pain, but it is one of the reasons we are always tired. We are missing that restorative sleep. Within a week of taking this medication, I could see the difference in my pain level and energy level.

As I said, this is MY journey that took me over a decade to implement. It took taking the information and suggestions of several doctors, putting it together to see what works for me.
Good luck to you!!

@sundance6 I had Lyme in 1983 and it still flares up when my immune system has been compromised. Stress is definitely toxic as well.