Fibromyalgia pain: Let's connect

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

grandmaR, Appreciate your insights and concerns! As I still work, run my own business, I have some business to take care of this morning! When I get it completed I will go into more detail to answer your qustions and concerns!
Thanks,
Sundance(RB)

Have a good day!

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!!

grendmaR, Sorry for the lateness in getting back to you from yesterday. I will give you a sumation of your insights and questions.
(PLEASE EXCUSE SOME OF MY SPELLING, STILL, CAN'T BELIEVE MAYOCONECT DOES NOT HAVE SPELLCHECK IN THE SYSTEM!)
To start with, as for the Oxycodone it was orginally perscribed to me for very bad Buresitas in my right hip. They had taken pictures and found it! I had a standing percreption of a 30 day supply for pain between steroid injections every 90 days which is the Law! Normally I would begin to hurt about 15-30 days before the next shot! During the average year I would maybe use one or two of the 30 day supply
during the year!
I was having one of these episodies about thirty days before my next injection. I had taaken one Oxy in the morning. Still had the pain early in the PM so I took another, my headache was gone for the first time in six months!
I tried the same regiment the next day. Again no headache! I went to my PCP and told him about what was going on with my headaches. He then percribed two Oxycodones per day! WHICH IS STILL MY PERCRIPTION TODAY!
My feeling about what you hear in the media is that my PCP, pharmacy, and the state have very strick rules about being able to fill it before 3 days when it is due! Much of this is do to street people and PCP's that catered to certain patients! Most of that has been stopped because of the danngers!
Yes, if I am late in taking my PM dose I get my headache back! During the six month period before I found out the Oxy helped I was taking 8-12 IBprofen or other over the counter medicine a day. Are these attributed to "addiction" to the Oxy? I don't know! My PCP and I talk about it all the time! He is comfortable with it as long as I am comfortable!
Because of my business I also don't have the Luxury of staying in bed all day!
ECERISE- I don't have the strength anymore to walk or ride my bike anymore. Plus because of the joint and muscel pain this type of excerise is very diffucult for me! I did start a year and a half ago with Silver Sneakers classes for Yoda and Flex and Balance clases twice a week. When March came that came to an end! Fortunately I have an Angel for an instructor who kept a few of us, which grows every week, for those two classes every week on a Zoom sesion! These do help!
Weight Control- My father was the same height I am, 5'11', and at one time weighed 250lbs. This was something I've always been aware of. So I keep my weight at 180lbs everyday of my life! Even during this last year I am very careful and disiplined about what and when I eat.
Aquatic Excerise- Unfortunately we have a governor who imposed the same rules of the start of the virus as people are compaling about now! Also, again the fatigue and muscel soreness makes it hard for me even if the pools were open!
Chiropractic and Teraputic Massage- I have had body work done on my for the last 50 years. Unfortunately the lady who had been doing on me for over 10 years retired a few years back. Unfortunately I have not found anyone to replace her on a regular basis. I have found someone who is good, but she is very expensive. I'm looking into a person who does both!
I also because of being somewhat Manic depresant I also take a low dose of an anti-depresant! Have been taking it for over twenty years and it does help with sleep, although when i have one of my "EPISODES" of either the Fibro. or Lyme it dosen't help and I suffer even more fatigue the next few days before i goes away!
I appreciate hearing about Your journey! Every little bit of information helps!
I hope I answered all of your concerns and your advice!
Please have a Happy and Safe New Years!
Sundance(RB)

grendmaR, Sorry for the lateness in getting back to you from yesterday. I will give you a sumation of your insights and questions.
(PLEASE EXCUSE SOME OF MY SPELLING, STILL, CAN'T BELIEVE MAYOCONECT DOES NOT HAVE SPELLCHECK IN THE SYSTEM!)
To start with, as for the Oxycodone it was orginally perscribed to me for very bad Buresitas in my right hip. They had taken pictures and found it! I had a standing percreption of a 30 day supply for pain between steroid injections every 90 days which is the Law! Normally I would begin to hurt about 15-30 days before the next shot! During the average year I would maybe use one or two of the 30 day supply
during the year!
I was having one of these episodies about thirty days before my next injection. I had taaken one Oxy in the morning. Still had the pain early in the PM so I took another, my headache was gone for the first time in six months!
I tried the same regiment the next day. Again no headache! I went to my PCP and told him about what was going on with my headaches. He then percribed two Oxycodones per day! WHICH IS STILL MY PERCRIPTION TODAY!
My feeling about what you hear in the media is that my PCP, pharmacy, and the state have very strick rules about being able to fill it before 3 days when it is due! Much of this is do to street people and PCP's that catered to certain patients! Most of that has been stopped because of the danngers!
Yes, if I am late in taking my PM dose I get my headache back! During the six month period before I found out the Oxy helped I was taking 8-12 IBprofen or other over the counter medicine a day. Are these attributed to "addiction" to the Oxy? I don't know! My PCP and I talk about it all the time! He is comfortable with it as long as I am comfortable!
Because of my business I also don't have the Luxury of staying in bed all day!
ECERISE- I don't have the strength anymore to walk or ride my bike anymore. Plus because of the joint and muscel pain this type of excerise is very diffucult for me! I did start a year and a half ago with Silver Sneakers classes for Yoda and Flex and Balance clases twice a week. When March came that came to an end! Fortunately I have an Angel for an instructor who kept a few of us, which grows every week, for those two classes every week on a Zoom sesion! These do help!
Weight Control- My father was the same height I am, 5'11', and at one time weighed 250lbs. This was something I've always been aware of. So I keep my weight at 180lbs everyday of my life! Even during this last year I am very careful and disiplined about what and when I eat.
Aquatic Excerise- Unfortunately we have a governor who imposed the same rules of the start of the virus as people are compaling about now! Also, again the fatigue and muscel soreness makes it hard for me even if the pools were open!
Chiropractic and Teraputic Massage- I have had body work done on my for the last 50 years. Unfortunately the lady who had been doing on me for over 10 years retired a few years back. Unfortunately I have not found anyone to replace her on a regular basis. I have found someone who is good, but she is very expensive. I'm looking into a person who does both!
I also because of being somewhat Manic depresant I also take a low dose of an anti-depresant! Have been taking it for over twenty years and it does help with sleep, although when i have one of my "EPISODES" of either the Fibro. or Lyme it dosen't help and I suffer even more fatigue the next few days before i goes away!
I appreciate hearing about Your journey! Every little bit of information helps!
I hope I answered all of your concerns and your advice!
Please have a Happy and Safe New Years!
Sundance(RB)