Fibromyalgia grieving and opiate intolerance.

[perchance dreamer]

@Misfit Toy, I have a whopping case of fibro, too. One thing that helps me is Baclofen, every 3rd night. I wish I could take it every night, but since it works on Gaba-B (no Gaba-A involvement), I am cautious about it. Gaba-B is not supposed to cause the dependence potential of Gaba-A, but I'm ultra careful about this now because of a past bad experience with a different drug. My doctors agree that taking every 3rd night should be okay, and I've had no problems with it. It helps me with both pain and sleep.

When I'm in a bad flare, contrast bathing helps a lot. I use cold packs for 20 minutes, wait about an hour, and then get in the hot tub or use heat packs. Going from cold to hot like that helps me far more than either of those treatments alone.

I also get pain relief from lying on an acupressure mat. I started at 12 minutes and now can use it 20 or 25 minutes. You get a strong whoosh of fresh blood to the area, and I guess there's an acupressure effect, also. There are lots of brands. I have the mat only, not the pillow.

http://www.amazon.com/Heavenly-Acup...&sr=8-3&keywords=heavenly+mat+acupressure+mat

There are lots of brands of acupressure mats, which I suspect are very similar.

@Rebecca2z, I used to have sleep paralysis, but it went away. My neurologist, who is also my sleep doctor, said it's possible mine was in response to head injuries and a gas leak accident I was in as a teenager. If so, the brain sometimes heals itself, which could have been why mine went away.

SP is associated with Narcolepsy, which I also used to have, but can be idiopathic.

I just finished reading a novel called The Household Spirit, and one of the main characters has severe sleep paralysis. Thankfully, mine was mild.

It's interesting that SP has been recorded in all times and cultures, and the hallucinations that can arise from that state are similar regardless of the time or culture.

Sorry to go off topic on that tangent!

 

[Rebecca2z]

@perchance dreamer , thank you for all the great info ! This 'thing' that happens to me when I sleep is weird, I wake up because I am not breathing, I am screaming in my head to take a breath and I struggle for a period of time trying to make my brain force my lungs to breathe.

Thankfully I don't have this issue unless I take an opiate. It is so scary, if I fall back asleep it happens over and over again until the opiate wears off. I am not sure if this true SP. There is a nerve that runs from the head and down into the neck that I have often thought was the problem.

That book sounds interesting, thanks !

 

[perchance dreamer]

@Rebecca, what you are describing may not be true SP. Opiates can depress respiration, so maybe it's just a drug response rather than SP.

SP is a disorder in which you awake during REM. Normally, people are paralyzed during REM so that they don't flail or injure themselves acting out dreams. They are asleep, so have no memory of being paralyzed.

During SP, you wake during the part of REM where you are paralyzed. You can't move, and it's like you are neither awake nor asleep.

Odd hallucinations can occur. Mine was mainly the sensation of out-of-body experiences, which I actually enjoyed when I realized that I wasn't dying. Other common themes are the succubus (feeling like you are being raped by a being) and also the presence of alien beings, which may or may not seem like they are hurting you. I had both those hallucinations at times, too.

 

[Rebecca2z]

@perchance dreamer , yes I agree what I have is from opiates, that being said when I was younger I had true SP, it was exactly as you described. Haven't had that for years... thankfully !
It is an interesting phenomenon !

 

[perchance dreamer]

@Misfit Toy, I had another thought. Training the brainwaves to SMR (sensory motor rhythm), a lower frequency of Beta, is supposed to help some people with fibro pain. It may be worth a try.

I've written of this company elsewhere. They sell home brainwave entrainment products, and you can try their NeuroProgrammer 3 audio product for a couple of weeks, without having to give a credit card number.

One of the many sessions they have on NP3 is SMR. You could download NP3 and listen with headphones and your eyes closed to the SMR session. I believe it's 30 minutes.

At times, it helped me sleep, but it's been so long since I've listened to it that I don't remember if it helped fibro pain or not. Every time I listened to it, though, it was extremely relaxing, which is something, anyway, since pain is so distressing.

I don't have any affiliation with the company other than as someone who has bought a few of their products. They have good customer support, or did when I contacted them a long time ago. Here's the link:

http://www.transparentcorp.com/products/np/

 

[Misfit Toy]

I'm becoming more and more aware that FIBRO is not my real issue, but Sjogrens pain is. Dry eyes and mouth also. Autoimmune.

I've been on plaquenil, the brand version and my pain has gone down by 50%. Even lowered prednisone.

I have joint pain, swelling, etc.

 

[zzz]

@perchance dreamer , thank you for all the great info ! This 'thing' that happens to me when I sleep is weird, I wake up because I am not breathing, I am screaming in my head to take a breath and I struggle for a period of time trying to make my brain force my lungs to breathe.

Thankfully I don't have this issue unless I take an opiate. It is so scary, if I fall back asleep it happens over and over again until the opiate wears off. I am not sure if this true SP. There is a nerve that runs from the head and down into the neck that I have often thought was the problem.

This sounds like central sleep apnea, which is much less common than obstructive sleep apnea. In central sleep apnea, the brain simply doesn't send the proper signals to the lungs to breathe. Medications can cause central sleep apnea, and it makes sense that an opiate could be causing it in your case.

 

[Rebecca2z]

Thank You @zzz for that info !

 

[xrayspex]

wow MfT--I just came on here to do a search on autoimmune treatments like Plaquenil as I have Sjogrens but haven't tried any biologics etc I can relate to so much you wrote--I just had to cut a vacaction short because I was miserable not in my own enviroment and I was swearing while in a pain attack that I would get backto the rheumatologist or my pCP and look into plaquenil or methotrexate or belimumab or somethng like that!
Also for me propoxyphene was the only thing over the years that helped with pain and fatigue--since its been gone I have not had decent pain management and too many side effects from everything I try. Even just advil or aleve or tyleonol now cause burning in my kidneys and spine--I think its partly a detox problem but also maybe an autoimmune thing where i neurologically react to chemicals my body doesn't like.

I am afraid to try plaquenil tho because my eyes are having trouble already with the SJS, just taking naproxen or mini dose of dramamine can make my eyes blurrier etc

will send you a note too

This week has been horrible for me pain wise. I have been working a lot and leaning over so maybe that is the reason. Having said that, the pain actually fuels me to work more out of a need to distract.

Or, perhaps it's the weather. The worst time of year for me is spring/summer as far as pain. Summer and winter.

A lot of people on here love opiates, or they enjoy how it helps them overall. Not just the pain, but the CFS. For me, opiates make me feel awful. I have horrible itching. I take tramadol only to be up all night due to itching and then it just makes my mind wonder. I feel drugged and with how much? 1/2 a tramadol. That's crazy! Ultram does nothing for me pain wise but brings on a million side effects.

What does help...sort of? Fentanyl, but I become drugged, like completely drugged from fentanyl. No itching though, but no sleep either. Interestingly though, Fentanyl ends up causing more pain, because it does something to the nervous system and makes me tense up. It totally messes up my brain. I become agitated and angry. I become livid on most opiates. They rev me up and make me react. Really react.

I miss DARVOCET. The #1 drug of choice for this. I had no side effects, could sleep great and go about my day. Not anymore. Does anyone know if it is available anywhere? I have looked everywhere. Online that is.

I have tried all opiates with no help. Dilaudid, morphine, make me vomit and itch. Demerol is the worst. Codeine...forget it. Benadryl doesn't even stop the itching with codeine.

I take 800 mig of ibuprofen, I am on Lidocaine patches. I take baths, used magnesium body spray from ancient minerals....nothing helps like darvocet did.

Just shoot me.

The other day I realized how much pain I have by touching my arm. just putting a finger to my arm and poking it. What pain that caused.

I didn't develop fibro until 14 years into this illness. That really bothers me. WHY? Why did it come on? I just got done with endometriosis and then....in comes fibro. JESUS. Yup. That's how I feel. God, are you up there? Give me a break. The endo just about killed me literally and now this.

I was thinking why I can't vacation well anymore. It's because of fibro. If the bed isn't right, the pillow isn't right, if I don't have my million meds and supplements, my heating pad, my fibro will destroy any kind of vacation. I need a whole other suitcase for all of my fibro stuff that I "must" have.

A vent. A much needed pain vent.

 

[xrayspex]

Mya--I agree about the Zofron, I used that about 9 mos after being given it for nausea and happily discovered side effect of helping pain
unfortunately I do have slow digestion and sjogrens and it wasn't good over time for my digestion and regularity etc
and it seemed like it slowly stopped working as well
but was big help for better part of a year

While I was trying to figure out what medicines worked for me, I found a naturopathic medicine that helped with the pain. It is called Channel Flow by Health Concerns. However, sometimes it does show up as hydromorphone in drug tests if that is a concern. I thought it might be something you could try. Sam-e, Beta Alanine, and MSM have also helped me with the Fibromyalgia pain.

I also had CFS several years before developing Fibromyalgia. First it was CFS, then it was Hashimoto's Disease and then Fibromyalgia.

I agree with the statement about Lyrica and Gabapentin. I lost so much of my thought processes while on those medications that I no longer felt human. Savella, however, has helped both my husband and I with the pain and did not cause more brain fog. Many people get sick when they first try it (nausea and vomiting) because their doctors don't tell them to titrate the Savella for the first three weeks. It will make you sick if it is not titrated. However, it is worth trying.

If you don't have problems with slow digestion, Zofran will help with not only nausea, but also the fibromyalgia pain. It works by preventing the spinal fluid from re-uptaking too much 5-HTP. But, it will slow down digestion.

 

[IntelligentImpulse]

@Misfit Toy : Have you tried using medical marijuana? I've had a bit of luck with that so far.

 

[Misfit Toy]

@IntelligentImpulse -pot makes me paranoid now that I am sicker and older...don't know why.

 

[DeGenesis]

Opioid-phobia is a real phenomenon, and it makes me sick.

 

[GypsyGirl]

Opioid-phobia is a real phenomenon, and it makes me sick.

Would you mind elaborating?

 

[Gingergrrl]

I wish I could take it every night, but since it works on Gaba-B (no Gaba-A involvement), I am cautious about it. Gaba-B is not supposed to cause the dependence potential of Gaba-A,

@perchance dreamer, do you know if the actual supplement called "GABA" is Gaba-A or Gaba-B (or both?) I have never tried it and am still debating b/c the whole thing confuses me! I wanted to try it for a different reason (not for pain control) but no idea if it would work or how it would be.

 

[Sushi]

do you know if the actual supplement called "GABA" is Gaba-A or Gaba-B (or both?)

GABA is a neurotransmitter (and an amino acid). It binds to types of receptors called GABA A and GABA B. So the A & B aspects refer to the receptors, not to GABA itself.

 

[panckage]

Would you mind elaborating?

Many doctors won't prescribe opiods in the USA anymore when the patient's need it. There was a huge crackdown a few years ago in which many patients were suddenly taken off tramadol and we're forced to go into withdrawal. Many doctors wouldn't even help their patients taper from it. Pretty ugly situation

 

[PennyIA]

A vent. A much needed pain vent.

Sorry I can't offer much advice... but I would tell you that I used to take a lot of opioid pain killers that only helped X amount... but something was better than nothing.

Then, I started to itch.

Now, I have a full-out allergic reaction to not only opioid pain killers, but also to any pain killers that act on the opioid receptors.

I'm down to morphine (wouldn't want to take it unless I'm in surgery as yeah - it's too strong for most anything).
Or Tramadol - which has lots of issues with taking it and isn't for everyday use at all (if I follow correctly).
Which means prescription Advil, Ibuprofen, non-prescription Aleve, Advil, Ibuprofen, Tylenol and aspirin.
Advil & Aleve do NOTHING for me, not even as good as a sugar pill.

That's it... that's what I can take. There was a new NSAID that I tried the other day - and it must be a lot like Advil & aleve - as I had no response from it.

It sucks not having enough options.

 

[Misfit Toy]

Opioid-phobia is a real phenomenon, and it makes me sick.

What is opioid phobia? Never heard of it. You are fearful of opiates? I am not, but would love to be able to take them without side effects. Some I am okay with...but very few. Morphine is the devil for me.

 

[PennyIA]

Pulled over from the other thread:

FWIW - it's the same in the US. Some research was done that 'proved' that opioid use for chronic pain didn't help.
And with the 'fear' that "USE" equals "addition" -- even though it's often been discussed that "DEPENDENCY" is NOT the same as "ADDICTION" and that if it's what you need to improve quality of life - and have an identified medical condition - that 'use' is appropriate... well, there are TONS of chronic illnesses that they are now trying to get patients off of opioids.
Even worse, in my mind, is that they are doing this to people who have a fairly well understood medical conditions. Which means that ME/CFS? well, yeah - we're frequently considered to be addicts if we come in claiming pain and wanting help.

....

I'm thinking it's the DOCTORS and the bad-rap of pain-related opioid addiction that has the phobia, not the patients.