Fibromyalgia pain

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the ‘tender spot test’ several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I’m alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I’ve tried them all, I think), or anything, besides hobbies and such? I’ve tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn’t help, but I’m hoping one of our members might have some knowledge that could help. I’d really appreciate it.
hugz,
Clownscrytoo

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

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@parus

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

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For sure! Stress can do LOTS of horrible things to your body!!

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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)

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@sundance6

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)

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Have a good day!

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@grandmar

Have a good day!

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Thanks! Will get back with you in a bit! Still working,WHICH IS GOOD! HASN'T BEEN MUCH OF IT LATELY!
SUNDANCE(rb) hAVE JUST HEARD BACK FROM ONE OF THE USLESS DOCTORS IN MY SYSTEM. After I shamed him into answering my questions about Medication I got a list!

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@grandmar

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!!

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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)

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@sundance6

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)

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Hello!
I see you have been through the ringer with this affliction!!!
Just one question pertaining to your headaches.
Have you had an MRI to rule out anything that might be going on with your spine?
Many spinal issues and FM mimic each other….I found that out the hard way.
For years and years I attributed all my aches and pains to FM.
When I moved to Florida (my current place of residence), the doctor took MRIs and found that my spine was a mess!
Today, my FM symptoms are minimum.
I just have to worn anyone who does my massage about the FM.
If they are any good, they know about the trigger points and not to do a deep massage.
Once, I forgot to tell someone, and within hours I was in deep pain.
I hope the New Year brings you health and a lot less pain!
Ronnie

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Ah! MRI! You bring up a very Sore Point with me! Eight years ago I had a Flaa and a Tramatic Brain Injury! They heald it with medications but it took me years to come back from it.
I went through every dept. in my hospital system!! In nuerology they gave me an MRI. I had a Nurse Practionter work with me! Even though there were some strange things she said they had no reaason for my headaches! Back then it was in my first 6 months and I did not have the strength to argue with her. She then tried Botox shots that were just starting out! Probably had the worst 3 weeks of my life! When she gave me the list of side effects none of what I was going through then was listed!
She said I was Crazy!
I laugh now because what they list in the TV now about side effects are what I went through then but were never mentioned!
I do let someone know when I get a message or Chiropractic work!
Hope it is nice and Sunny for your New Years.
Right now in ABQ it is 22 degrees! But like the Dry Heat in PHX, we have a Dry Cold! I'm getting ready to go out on base, Kirtland AFB, and work. I just have a long sleeve shirt and a long sleeve undershirt on.
Unless the wind blows it is ok.
Thanks,
Sundance(RB)

REPLY
@sundance6

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)

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@sundance6 We are not all wired the same and I enjoyed reading your comment. Sounds to me like you know what best works for you. It takes time to learn what helps the most for each of us. There is a lot of information out there. What works for one may hurt another. As for typos-I could never learn to type. I try to proofread otherwise my idioglossia appears on the screen. Neuropathy and mild dyslexia can also complicate things. This is a community where mistakes are allowed and we all have bad days.

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Parus, very correct aout this site as being non judgemental! The support on here has saved my Life! When you get so frustrated not being able to find out what is wrong with you from doctors and no one to talk to in person, Mayoconect is a life safer!
I have asked in the past about Spellcheck but they say they can't do it! Strange!
Other than some learning disabilities, I say I can't spell because I went to a Catholic school and I had caticism instead of Spelling!!
Happy Years!
From the Land of Enchantment!
Sundance(RB)

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I was quilting with a lady who suffered from fibro. She said that the CBD oils really helped her.

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@Erinmfs

I was quilting with a lady who suffered from fibro. She said that the CBD oils really helped her.

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MGMolly, Thanks for the info! I have tried taking CBD in gummy form, drop form and cream form. For some reason it has never worked for me! But as Parus said we are all wirerd differently!
Have a Happy New Years!
From The LAnd of Enchantment!
Sundance(RB)

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