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

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)

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@sundance(RB)
Hi Richard, I was scanning through this discussion and in this post and the next one (by @grandmar ) you both mention FBS. Is this a reference to fibromyalgia? When I search for FBS I come up with an illness called Fanconi-Bickel Syndrome (a new one to me and sounds pretty rare). Sorry, just trying to clarify which you are referring to.

I also have seen that you are looking to try myofascial release. I have not tried it but a lot of people on Connect (and I mean a lot) say it is very effective.There is also a discussion about it started by Jennifer Hunter. Link is here:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search
Good luck with it. Best to you, Hank

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@jesfactsmon

@sundance(RB)
Hi Richard, I was scanning through this discussion and in this post and the next one (by @grandmar ) you both mention FBS. Is this a reference to fibromyalgia? When I search for FBS I come up with an illness called Fanconi-Bickel Syndrome (a new one to me and sounds pretty rare). Sorry, just trying to clarify which you are referring to.

I also have seen that you are looking to try myofascial release. I have not tried it but a lot of people on Connect (and I mean a lot) say it is very effective.There is also a discussion about it started by Jennifer Hunter. Link is here:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search
Good luck with it. Best to you, Hank

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Hank, Yes it is Fibromyalgia! I see it refered to with those letters. I appreciate the link to the discussion. After three days of looking I have finally found someone who is farmiliar with both Lyme and Fibromyalgia in ABQ. Talked to her briefley this morning, Saturday! She knows our medical system I am on! She also asked me about possibly Mold Exposure! Which I have thought about before but never found how to get tested! She and I are going to have a conultation visit next Thursday!
Will keep you posted!
From The Land of Enchantment!
Sundance(RB)
PS, Again, You are such a helpful and considerate person to have on MayoConect!

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I have been considering myofascial release massage, but haven't due to COVID. I am pleased to see so many have found relief with this technique! I think I will call the local massage therapist and see if she does myofascial release…I think (hope) she does! Mayo Connect is such a great resource; not only in knowing there are others who suffer like I do, but to learn of treatment modalities that might help! Would you please post your findings on mold exposure? I would be really interested to learn how it might relate or impact fibromyalgia. Thanks again and I wish everyone well!

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@rossjt

I have been considering myofascial release massage, but haven't due to COVID. I am pleased to see so many have found relief with this technique! I think I will call the local massage therapist and see if she does myofascial release…I think (hope) she does! Mayo Connect is such a great resource; not only in knowing there are others who suffer like I do, but to learn of treatment modalities that might help! Would you please post your findings on mold exposure? I would be really interested to learn how it might relate or impact fibromyalgia. Thanks again and I wish everyone well!

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rossjt, I finally found someone who is trained in Myofascial Release! She is both farmiliar with not only Fibromyalgia, Lyme Disease and Mold Toxicity! Meating with here this coming Thursday! Will keep you posted!
Sundance(RB)

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@irene5

Elavil is also amitriptyline which is used for depression, neuropathy, migraines, and fibromyalgia. It is also used to lower blood pressure. I was on it for ten years, and it was awesome. I no longer have migraines. Even though I was diagnosed with fibromyalgia, I don’t think I have it. I do gave chronic pain and peripheral neuropathy – a pain med that might help you instead of hydrocodone is tramadol. I am on so many meds for a debilitating lung disease (never smoked) that I stopped the Elavil – I saw your post and thought that it might be a great choice for you. I am overly careful with pills because I am old and small. Hope you feel better soon. Quality of life is sooo important. Irene

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Elavil is no longer on the market and Amitriptyline is and since it is an old drug, it’s way cheaper. I was just prescribed this but uneasy about taking it because I have tried so many other stuff that did nothing but make me worse. Norco, not an option in Florida due to the opioid epidemic and that was the only thing that gave me a better quality of life. CBD, lyrics, cymbalta, and about 20 other anti depressants,muscle relaxer,etc did nothing. My depression and pain is at the worst now and mood shifts and triggers that cause me to become so angry that they can be explosive. Doctor said he wanted me to take these to help my pain,depression and insomnia etc. I am tired of meds and already take lunesta to sleep but pain prevents quality of what sleep I do get. Virus makes things harder because what if I have a reaction and there is no help then what. I pray for God to tell me what to do. It might be be the one that works but then again I did try it in 2017 and I felt like I had a hangover the next day and felt crappy. Then again the multiple doctors had me on so many different drugs, I don’t know if it was that or combination of the hundreds of things going wrong in my body that was dismissed and every time I saw someone I was told to take this or that drug instead of getting to the root issues. Curious if anyone with fibro, ptsd, depression, nerve damage, spinal stenosis,peripheral nerve damage etc had good results. Thx

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@fatsfat

Elavil is no longer on the market and Amitriptyline is and since it is an old drug, it’s way cheaper. I was just prescribed this but uneasy about taking it because I have tried so many other stuff that did nothing but make me worse. Norco, not an option in Florida due to the opioid epidemic and that was the only thing that gave me a better quality of life. CBD, lyrics, cymbalta, and about 20 other anti depressants,muscle relaxer,etc did nothing. My depression and pain is at the worst now and mood shifts and triggers that cause me to become so angry that they can be explosive. Doctor said he wanted me to take these to help my pain,depression and insomnia etc. I am tired of meds and already take lunesta to sleep but pain prevents quality of what sleep I do get. Virus makes things harder because what if I have a reaction and there is no help then what. I pray for God to tell me what to do. It might be be the one that works but then again I did try it in 2017 and I felt like I had a hangover the next day and felt crappy. Then again the multiple doctors had me on so many different drugs, I don’t know if it was that or combination of the hundreds of things going wrong in my body that was dismissed and every time I saw someone I was told to take this or that drug instead of getting to the root issues. Curious if anyone with fibro, ptsd, depression, nerve damage, spinal stenosis,peripheral nerve damage etc had good results. Thx

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I have taken Amitripyline for YEARS and couldn't live or sleep without it. I have Firbro and was prescribed that. I take it about 7:30p., and go to sleep about two hours later. If I take it too late, I am a little groggy in the morning. I too have serious back pain and have Tramadol but it does absolutely nothing for pain. I just a percoset that I had left over from dental surgery and it worked for about six hours. I know no one will probably write an Rx for that. I wish pain doctors had chronic pain~~maybe things would change.

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Hello, wheelerma and fafsfat. I've been on this fibromyalgia roller-coaster for 35+ years, when it wasn't identified as a legitimate 'illness', when it was considered mental, or anxiety, or depression, or all in the head, or (females) hormonal and I was pretty much dismissed. I'm amazed at a video I saw on youtube about what is now realized as actually a very painful condition, that creates havok in our lives.
I have been through a bunch of trial and error meds. Lyrica did help me a lot, with leg cramping, RLS, neuropathy, and overall pain. Gabapantin helped also. I'm off both now. I take Robaxin for muscles, helps. My main pain relief, sleep relief, anxiety relief, depression help is medical marijuana. I take 1:1, CBD:THC every night before bed. I use the tincture drops, about an hour before bed. I sleep now, all night through, with little pain and enjoy the rest I get. It's an amazing change in my life. Nothing has helped me as much as this combination.

There are times I have more pain and issues, so I may increase the nightly dosage a bit. I also use CBD drops during the day if needed, and/or the 1:1 drops, just lesser amounts. I'm totally surprised at the good results, that I'm off most of the heavy pain, etc phara. It's lovely.

I also HIGHLY recommend heated pool therapy. I go to the therapy pool 2X weekly when physically able and spend an hour in the 94 degree water, walking and moving, getting the exercise I must have but oh, so softly and w/no pain. I am pain free…..almost….when I step into the water. Walking, of course, is also helpful.

So, now you have my story. I now understand the condition. I know it causes actual increases in pain whenever I have anything done, like dental or removal of skin lump or hit myself or falll or whatever. More pain for us is normal and legitimate. Our pain nerve/brain connections are super sensitive and make it worse for us. What a wonderful experience that was when I learned it's now scientifically supported and understood. Wow! What a joy to know what's happening, it's real and I'm not a wimp! I hurt like the dickens!

Let me know if any of this helps. It does for me. Blessings, Elizabeth

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@sundance6

rossjt, I finally found someone who is trained in Myofascial Release! She is both farmiliar with not only Fibromyalgia, Lyme Disease and Mold Toxicity! Meating with here this coming Thursday! Will keep you posted!
Sundance(RB)

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Let me know what you learn about mold toxicity. I have thought of this along with many other contaminants in our water, soil etc. I bought a home mold kit but just need to get my mind together to figure out how to do it. I have had many myofascial release sessions thru the years. Helps for a short time and then it’s back. Tens unit helps and heat. CBD and combined ratio of CBD/the made my pain worse and I tried many varieties. Apparently I am one of the lucky ones that the c1a receptors in my spine is goes haywire. I may have the receptor name wrong, but nevertheless, just another let down and very expensive

Liked by Sundance(RB)

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Just picked my kit up mid week! Will set it up tomorrow, Saturday and let you know. In reading the directions they say I need to set up one inside and one outside! will keep you posted on that!
II had my MFR a week ago Thursday and it was horrible! The person said she knew how to do it. All she kept talking about was Mold toxicity! She just Blew my off on Fibromylgia!
Had my old body therapy person a procedure call The Trager Approach! Look it up if you have a chance! Anyway I went on line and found someone who is a licecened practionare of it. Had it done this last Tuesday and made a Big Difference!
Have had one of the better weeks.
Good Luck!
Sundance(RB)

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@sundance6

Just picked my kit up mid week! Will set it up tomorrow, Saturday and let you know. In reading the directions they say I need to set up one inside and one outside! will keep you posted on that!
II had my MFR a week ago Thursday and it was horrible! The person said she knew how to do it. All she kept talking about was Mold toxicity! She just Blew my off on Fibromylgia!
Had my old body therapy person a procedure call The Trager Approach! Look it up if you have a chance! Anyway I went on line and found someone who is a licecened practionare of it. Had it done this last Tuesday and made a Big Difference!
Have had one of the better weeks.
Good Luck!
Sundance(RB)

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Go figure so many of the so called are BS. The professional that did my MFR was shocked because I wasn’t flinching at how deep and hard he was going. He said he has never worked on someone with so many knots etc, like a steel beam. It felt good to me, but felt bruised the following day day, but then again my tens unit makes areas feel bruised as well because it does the same type thing. No never heard of the Trager Approach. Have you heard of anyone with success from Ketamine infusions?
I had Myers infusion IV’s for years but never Ketamine and a friend of a friend has Lupus and Lymes disease and she says she feels almost like she is healed.
Thx and keep me posted on the mold kit

Liked by Sundance(RB)

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@fatsfat

Go figure so many of the so called are BS. The professional that did my MFR was shocked because I wasn’t flinching at how deep and hard he was going. He said he has never worked on someone with so many knots etc, like a steel beam. It felt good to me, but felt bruised the following day day, but then again my tens unit makes areas feel bruised as well because it does the same type thing. No never heard of the Trager Approach. Have you heard of anyone with success from Ketamine infusions?
I had Myers infusion IV’s for years but never Ketamine and a friend of a friend has Lupus and Lymes disease and she says she feels almost like she is healed.
Thx and keep me posted on the mold kit

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Just looked up Ketamine. Now that I remember we used to do it on our horses. Never understood it! I'm just funny about injecting anything new in my body. I have a history of bad reactions to new medications!
Google the Trager Approach! Very gentle massage approach! The thing that upset me about the person that did the MFR on me did the same as they did on you! VERY HARD!
This was after I told her not to try and dig knots out! I've had body work done on me for over 60 years! So I know my body and how it reacts!
Just starting to moving around this morning, so I will keep you posted on the Toxicity test!
Thanks,
From The Land of Enchantment!
Sundance(RB)

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@fatsfat I might be looking into Ketamine for chronic abdominal pain that keeps getting worse and so far the injections tried, tests ran, labs, scripts do nothing. It now goes down the middle 6 or so inches wide from pelvis to under xiphoid. Lost appetite now and THC works now more. Read about Ketamine for depression but also for pain. Though I think pain is a 5-6 course treatment and costs around $2-$3k, suppose to reset brain and help nerves. Now a lot of pain clinics do it and it was just on 60 minutes for bad depression. Though nervous as a serious drug but when you are in pain all of the time and end of ropes. Rob

Liked by ess77

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Has anyone having had the COVID 19 vaccine had a fibro flare-up? Just curious. I know the yearly flu shot causes a flare for me. Having the 1st round of the vaccine tomorrow.

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@parus

Has anyone having had the COVID 19 vaccine had a fibro flare-up? Just curious. I know the yearly flu shot causes a flare for me. Having the 1st round of the vaccine tomorrow.

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Hi @parus

I had my first vaccination for COVID in mid-January and will be getting my second one tomorrow. I did have fatigue and muscle/joint pain for a few days. I will be interested in hearing about your experience as well.

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@parus

Has anyone having had the COVID 19 vaccine had a fibro flare-up? Just curious. I know the yearly flu shot causes a flare for me. Having the 1st round of the vaccine tomorrow.

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@parus I never thought of it ,but yes after I had my first vaccine shot I couldnt sleep that night for the pain. But it only lasted for 1 miserable day thank goodness . My arm was sore at the injection site like when I would just get the flu shot but my back,legs arms hurt like fibro flare . And another thing if you or anyone has dry mouth you will feel 10 times drier . I was drinking water all night and next day but it to wore of eventually . So keep losengers or water handy .

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