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Fibro question, yet again. I'm sorry.


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I am so tired of being in pain.   I can't take it anymore.    

 

I have a GP appt Monday.    I also start back up with my chiropractor on Tuesday as those adjustments seem to help a good bit, at least they did before December.  I stopped going to Chiro in December because Chiro didn't take covid seriously and dh got very sick from covid and frankly, I was too scared to go back to his office.   I'm vaxxed & ready to return.   At this point though, I don't know if adjustments will help as well as they did, because it's worse.    
 

I'm not on anything daily for fibro.  I tried neurontin and had a nervous breakdown that rheum said was caused by neurontin.  I guess we don't know for sure if it was, but the breakdown was horrible and I can't chance that again.   Lyrica causes weight gain and I can't gain more weight, plus it's related to gaba/neurontin.    
 

So at my appt Monday, I'm going to ask for extensive testing which is what I need help with.    Can my regular GP test me for food allergies?   I'm willing to test for any and everything just to make doubly sure this is fibro and not something else at this point.   Can she test for Lyme or do I see a different dr for that? We're in the south so I doubt it's Lyme, but Idc, just test me.   What else do I need to be tested for?   Symptoms are pain, lots and lots of pain.   Severe brain fog.   It's all gotten worse in the past 6 months probably due to extreme stress.    
 

Also what pain killer helps y'all with fibro.  Tramadol does nothing.    Xanax is used to relax me and while it helps, I really don't want to be on Xanax everyday, multiple times a day.     I've started drinking lemon ginger tea and also ginger/moringa/turmeric tea which does actually help, but I also have (managed) interstitial cystitis and I'm scared the turmeric will start screwing with that after a while.    I've done co-q-10 (400mg I think) and couldn't tell a difference.    

 

What can I ask for regarding testing?    What can I ask for regarding meds?    Is there some med I'm missing because all I see recommended are lyrica and gaba.   
 

thanks for reading this book.  If you're at a loss, that's fine, no worries.  

 

I asked something similar a while back but I think it was under my old deleted username or maybe not.  I can't think right this second to even look for it. My brain is fried from writing this.  

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I have fibro, plus young onset Parkinson’s. I don’t know where one pain ends and the other begins, so your mileage may vary. 
I am on muscle relaxers and anti inflammatory. Even with those, I have pain. 
1.) I find I feel better when I move. It is so hard. Seriously hard. I do 1-2 hours of yoga almost every day. I have tried other forms of exercise, but yoga has been the best. About half of the yoga I do is yin style, which is floor based and relaxing, meditative. It is so soothing to my soul. 
2.) Meditation. 
3.) Anything that i find relaxing, like earthing. Or walking barefoot in the backyard or laying on the grass and reading outside. Really. Anything to reduce stress. 
4.) Diet. This was so hard for me bc I have lost my sense of smell due to Parkinson’s and my taste buds have changed. I am buying as much of my food from the farmer’s market as possible. I have removed meat, reduced dairy and eggs. I think more in terms of “flooding my body with the freshest fruits and vegetables as possible.” I juice - always have a fresh green juice in fridge, plus one non-green one. Almost no sugar. 
5.) Heat. I didn’t think I could ever do hot yoga but I have found that my body loves the heat. One of the yoga studios I go to uses infrared heat, which is suppose to be better for the body than just “hot” yoga. I also go to a spa from time to time. and use their infrared sauna. 
6.) I am trying to detox my body and life as much as possible. 
 

edied to add: I have ongoing prescription for pain meds (Tylenol with codeine), but I am trying not to use them unless pain is unbearable.

Edited by GoVanGogh
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30 plus years of fibromyalgia. 
 

test for nutritional deficiencies (vitamin d especially)

test thyroid but someone else can tell you the specific tests (outlined on “stop the thyroid madness “. 

test for celiac or non celiac gluten sensitivity 

no pain relievers help me totally. What has helped some is low-dose naltrexone, co-q-10, the chiropractor and curcumin 

I can’t do hot or cold. I have a narrow band of temperature where I do ok. 
 

test for diabetes or pre diabetes. 
 

There is a website called “fmtest.com” but I don’t know if it’s good. 

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I also have a narrow band of “enough exercise but not too much”. Too little exercise and I freeze up and can’t move. Too much and I am in too much pain to move. 
 

I just did 9 months straight of physical therapy. Best thing my doctor ever prescribed for me. Hands down. 

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Ok, this is kind of weird, and YMMV, but my kid with constant, chronic pain (was diagnosed with fibro, now diagnosed with hypermobile EDS) has recently discovered that inositol helps a lot with pain. They started taking it for ADHD/anxiety type symptoms, as it is meant to help with calm focus without being sedating, but they immediately noticed that it really made a dent in their pain - both joint/muscle/ligament/tendon pain and headache pain related to craniocervical instability. We were really pleasantly surprised.

Also cucurmin (in the form of Curaphen Extra Strength) helps somewhat.

And for really bad breakthrough pain, 1/2 tablet of Norco so they can get some sleep.

ETA: and, hugs. So sorry you are going through this.

Edited by Chrysalis Academy
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Thanks to all of you! 💛💛💛   I've taken notes and am looking into everything y'all have listed!    
 

I have tried physical therapy but it didn't do a whole lot and I have bad agoraphobia and it was just too much for me, unfortunately. 😞    I'm committing to riding my exercise bike at least 2+ miles every other day, and I think it may help a bit since my pain is mostly hip and up.  At least it will keep the blood pumping, ykwim?     Dh and I went swimming in the ocean last week when we were staying at my parents' house.   I swam and floated and treaded water for at least an hour and it was magical.     It may be time for me to consider joining the Y, which will be extremely hard for me, but I need to look into it, at least.   That or buy a house with a pool and I truly adore my house now.  😞
 

I'm making an appt with a new rheumatologist today (waiting on a call-back).  I haven't seen a rheumatologist in 5+ years and it's time.  I hate going to the doctor, but I can't put it off any longer.    
 

Thanks y'all.  I know I've complained quite a bit about this, but I have no one irl who I can talk to about this who actually knows and understands.    Sometimes I just need to whine.   I am excited to see a rheumatologist, though.  Lord, please help him to help me.  🙏🏼

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14 hours ago, Chrysalis Academy said:

Ok, this is kind of weird, and YMMV, but my kid with constant, chronic pain (was diagnosed with fibro, now diagnosed with hypermobile EDS) has recently discovered that inositol helps a lot with pain. They started taking it for ADHD/anxiety type symptoms, as it is meant to help with calm focus without being sedating, but they immediately noticed that it really made a dent in their pain - both joint/muscle/ligament/tendon pain and headache pain related to craniocervical instability. We were really pleasantly surprised.

Also cucurmin (in the form of Curaphen Extra Strength) helps somewhat.

And for really bad breakthrough pain, 1/2 tablet of Norco so they can get some sleep.

ETA: and, hugs. So sorry you are going through this.

Chrys, do you have a link for the inositol?    I'm seeing two types...

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1 hour ago, WildflowerMom said:

Chrys, do you have a link for the inositol?    I'm seeing two types...

Here is the one we are using:

https://www.truehope.com/inositol

I know there are other formulations, our ND suggested the one from Xymogen (RelaxMax powder) which contains other amino acids as well. But this formulation is the one that really helped with pain, so we're sticking with it. FWIW, Truehope is a supplement company with a ton of clinical research backing up its products, particularly for mental health support. I'm not shilling for it or anything, but we've tried a lot of supplements and I'm really impressed with this company based on our own experience. So just sharing in case others find that helpful.

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54 minutes ago, Jean in Newcastle said:

When I mentioned tests I assumed that you have already been tested for RA, Lupus, Lyme etc   but perhaps that was a wrong assumption. Fibromyalgia is in some ways a diagnosis given after other things have been excluded. 

I agree to testing for all that Jean mentioned, as well as mold/mycotoxins. Although in our experience you will need an ND or Lyme-literate doctor for that. Otherwise you will just get an IgE test for mold allergy and be told it's not an issue. 

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1 hour ago, Jean in Newcastle said:

When I mentioned tests I assumed that you have already been tested for RA, Lupus, Lyme etc   but perhaps that was a wrong assumption. Fibromyalgia is in some ways a diagnosis given after other things have been excluded. 

I have been tested several times.  I think the last time was a couple years ago, but I could be wrong.  My GP is thinking my fibro is trying to morph into Lupus (runs in my family), but so far, tests are negative for that.   Hopefully this rheumatologist can give me more answers.  

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58 minutes ago, Chrysalis Academy said:

I agree to testing for all that Jean mentioned, as well as mold/mycotoxins. Although in our experience you will need an ND or Lyme-literate doctor for that. Otherwise you will just get an IgE test for mold allergy and be told it's not an issue. 

I will need an ND for mold testing?   What is an ND?  Sorry, so many questions!   This is for mold in your body?    I can smell mold when I sneeze, at least I think.    Maybe that doesn't even make sense... idk.

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18 hours ago, Jean in Newcastle said:

I can’t do hot or cold. I have a narrow band of temperature where I do ok. 

I have a very narrow band as well. Like 80-100 degrees. But no bright sunshine, as that really bothers my eyes and sets off my neuropathy. 
Same with exercise. I have to move to keep from stiffening up but too much or I am crying in intense pain. Nothing fast or bouncy. No loud, fast music. No strobe lights. (Which eliminates a lot of spin classes.) 

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1 hour ago, Chrysalis Academy said:

Here is the one we are using:

https://www.truehope.com/inositol

I know there are other formulations, our ND suggested the one from Xymogen (RelaxMax powder) which contains other amino acids as well. But this formulation is the one that really helped with pain, so we're sticking with it. FWIW, Truehope is a supplement company with a ton of clinical research backing up its products, particularly for mental health support. I'm not shilling for it or anything, but we've tried a lot of supplements and I'm really impressed with this company based on our own experience. So just sharing in case others find that helpful.

Interesting on TH. My SIL has been on it for bipolar for many years. It has been a life saver for her, as pharmaceutical meds did not work for her. 
Like me, my SIL also has thyroid (Hashimoto’s) and chronic low vitamin D. 

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2 hours ago, WildflowerMom said:

Thanks to all of you! 💛💛💛   I've taken notes and am looking into everything y'all have listed!    
 

I have tried physical therapy but it didn't do a whole lot and I have bad agoraphobia and it was just too much for me, unfortunately. 😞    I'm committing to riding my exercise bike at least 2+ miles every other day, and I think it may help a bit since my pain is mostly hip and up.  At least it will keep the blood pumping, ykwim?     Dh and I went swimming in the ocean last week when we were staying at my parents' house.   I swam and floated and treaded water for at least an hour and it was magical.     It may be time for me to consider joining the Y, which will be extremely hard for me, but I need to look into it, at least.   That or buy a house with a pool and I truly adore my house now.  😞
 

I'm making an appt with a new rheumatologist today (waiting on a call-back).  I haven't seen a rheumatologist in 5+ years and it's time.  I hate going to the doctor, but I can't put it off any longer.    
 

Thanks y'all.  I know I've complained quite a bit about this, but I have no one irl who I can talk to about this who actually knows and understands.    Sometimes I just need to whine.   I am excited to see a rheumatologist, though.  Lord, please help him to help me.  🙏🏼

Re: Physical therapy My neurologist sent me to PT for my Parkinson’s diagnosis. I had a horrible experience with the physical therapist (he only wanted to work on keeping me where I was and not getting worse, when I wanted to work on getting better), then insurance refused to pay for any more than 8 sessions a year. I am now seeing a personal trainer and it has been a game changer for me. It is expensive but has given me my life back. 

Re: Swimming I have been begging DH to put in a pool. I feel so much better in the water! I can’t always trust that the pool at the gym will be warm enough and I have learned the hard way not to go ahead and get in the pool if it is too cool. 

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1 hour ago, WildflowerMom said:

I will need an ND for mold testing?   What is an ND?  Sorry, so many questions!   This is for mold in your body?    I can smell mold when I sneeze, at least I think.    Maybe that doesn't even make sense... idk.

Sorry, a naturopathic doctor, or at least a lyme-literate doctor who understands that mold mycotoxins can have health effects that go beyond straight-up IgE allergies. There are some MDs who do, but in our experience, none who take our insurance! 

This is a controversial topic in the "straight" medical community, so I don't want to get in the weeds here, but if it's something you want to explore I would recommend this book by Dr. Neil Nathan (MD). 

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33 minutes ago, WildflowerMom said:

This will sound stupid to other people and maybe it's because of the meds I've taken today 😀, but this thread has me crying.    Just having people who 'get it', it's invaluable really. 

It doesn't sound stupid at all. We've been struggling with inexplicable chronic illness for 5 years now. When the geneticist finally dxd my kid, I cried. Not just because we finally had an answer, but because he showed a lot of compassion, and seemed to get that what we were going through sucked.

Hugs to you. I hope you find answers.

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3 hours ago, Ellie said:

((((Wildflower Mom)))))

Some people find some relief when they eliminate certain foods; one way of knowing which ones are the problem is the Autoimmune Protocol.

 

Thank you!    Putting a book on my kindle now...  💛

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On Lyme:

If you want a Lyme test (and yes, oh my yes, Lyme is in the South!), you’ll need to do your research on which test and how to get properly tested.  It’s not a simple test your GP will just order.  I mean, she can and probably will order a test through Quest or Labcorp, but those are … notorious for false negatives.  
 

I had fibromyalgia, CFS and goodness, a whole slew of diagnoses for 5 years.  MS was the most depressing.  I was tested over and over for Lyme and it was always “negative.”  Long, crazy story but a vet finally said, “this sounds like Lyme and co-infections” … and lo and behold, we ordered better tests.  I had Lyme, Babesiosis, Bartonella, CO Tick Fever, 5 strains of salmonella, and a soup of other chronic infections.  I found a Lyme literate doctor and spent 4 years in intense treatment.  
 

Igenex has the best Lyme tests.  Draw the blood early in the week so it doesn’t sit over the weekend before testing. Expensive and worth every penny. Learn to read your Lyme WB. 


 

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