Do you have Fibromyalgia with Lyme Disease?

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CajunGrl
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   Posted 2/25/2010 1:18 PM (GMT -7)   
I am starting to think that's what I have and why I am in so much pain all the time. If you have Fibromyalgia, what do you take for the pain?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

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need some zs
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Date Joined Nov 2006
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   Posted 2/25/2010 1:39 PM (GMT -7)   
My LLMD thinks that Fibro IS Lyme. Don't give up trying to get better. I'm on narcotics for the pain -- I know some are really against it, but it helps me live some semblance of a normal life.

mother natures child
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   Posted 2/25/2010 1:52 PM (GMT -7)   
I was diagnosed with fibromyalgia and chronic fatique syndrome. In my opinion these are not diseases but symptoms of something far bigger.
 I am a Zebra


Dowa
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   Posted 2/25/2010 1:56 PM (GMT -7)   

I agree with you MNC: The clinic I detoxed at feels that fibromyalgia and other myalgias (there are many) are a symptom of toxicity.

CG: Did you not notice improvement in  symptoms after using your sauna? 


CajunGrl
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   Posted 2/25/2010 2:48 PM (GMT -7)   
I was told by my doctor that Fibro and CFS can start after a bout of Epstein Barr, which I had a few months before the pain started. She told me that most people recover from it but that some don't.

Dowa- I do feel a little better after I get out of my sauna but it never lasts. I am in pain 24/7. My muscles hurt so bad that no one can even touch my arms. My joints hurt all the time too and the pain sometimes feels like it's in the bones.

I can't take anything strong for pain right now because my liver is acting up. I just did an ultra sound on Monday to see what's up. My Alkaline Phosphatase keeps going up.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

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Dowa
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   Posted 2/25/2010 3:11 PM (GMT -7)   
I am so sorry you are in so much pain CG. Interesting about the EB as I was diagnosed with it MANY years ago, probably more than 10. I have read that most people with CFS will test positive for EB. Keep up with the sauna because after the detox I did with the sauna, my muscle pain went away after several years.

Razzle
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   Posted 2/25/2010 3:37 PM (GMT -7)   
Magnesium tablets helped a lot when I was told I had Fibro. I don't have that wide-spread muscle pain anymore, so I consider my case of Fibro caused by Magnesium deficiency...
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


CajunGrl
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   Posted 2/25/2010 3:50 PM (GMT -7)   
I am taking a supplement called C-M-K Citrate and it does seem to help a little especially when I take it with my pain medicine. It has Calcium, Magnesium and Potassium in it. I was also having bad legs cramps and the pain seems to have lessened a whole lot.

I'm not sure where the whole body pain is coming from but I do wish that it would go away. I cannot fuction lately. I just called and asked my doctor if she thought that Neurontin would help the pain. I've read that it has been working for fibro pain and has less side effects than Lyrica. I'm not sure that I can take it though because of my liver. Ugh! It's always something.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 2/25/2010 2:53:26 PM (GMT-7)


beths
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   Posted 2/25/2010 4:45 PM (GMT -7)   
My friend has been helped by LDN -read the Lyme disease solution by Dr Ken Singleton

Dowa
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   Posted 2/25/2010 5:14 PM (GMT -7)   
Elevated  alkaline phosphatase can also be from your gallbladder. Hope the ultrasound helps to solve the puzzle.  D

CajunGrl
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Date Joined Mar 2009
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   Posted 2/25/2010 5:17 PM (GMT -7)   
Dowa,

Yeah, I read that and I've also been having pain after I eat but it's not severe pain. It feels like stabbing pains. It swells in that area too. They did an ultra sound of everything in that area so I'm hoping my doctor can figure it out. If it's my gallbladder, I will feel better since it can be removed. Hopefully, I'll be able to do something to fix whatever is going on though.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 2/25/2010 4:27:56 PM (GMT-7)


nasalady
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Date Joined Sep 2009
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   Posted 2/25/2010 5:25 PM (GMT -7)   
Hi CajunGrl,

I was dx with fibro in July 2008. I have tested positive for VERY high levels of antibodies to both EBV and CMV.

As to pain meds, I've tried darvon which didn't work, morphine sulfate which does work but my doctor doesn't want to prescribe any more of them for me, and now I have been prescribed the fenanyl patch (25mcg/hr). I haven't tried it yet....my husband just went to the drugstore to pick it up.

I started a thread on the Chronic Pain forum about fentanyl patches to find out more about them:

www.healingwell.com/community/default.aspx?f=16&m=1729164

If there are better pain meds out there that don't hurt your liver please let me know! I'm worried about the patch because I'm allergic to some adhesives.

Good luck!
JoAnn
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com


CajunGrl
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   Posted 2/25/2010 5:30 PM (GMT -7)   
nasalady,

I tried Darvon too and it was like taking candy. I cannot even believe that it is a pain medicine. Vicoprofen worked really well for the pain but it messed up my stomach really bad. It has ibuprofen in it. Have you tried it yet?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


1bitten2xshy
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Date Joined Jun 2007
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   Posted 2/25/2010 5:34 PM (GMT -7)   
I believe in Fibro, but I also believe is is caused by "something". I do not personally think it is a "disease" all by itself.

I have had the extreme muscle pain as you describe. In fact, it was my very worst symptom.

Since finally treating for EBV, CMV and very high HHV6a & 7, I have almost ZERO pain.  That makes life wonderful!
 
I also take Mag Tab SR, Fish Oil and D3.


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Lyme Forum


nasalady
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   Posted 2/25/2010 5:40 PM (GMT -7)   
CajunGrl said...

I tried Darvon too and it was like taking candy. I cannot even believe that it is a pain medicine. Vicoprofen worked really well for the pain but it messed up my stomach really bad. It has ibuprofen in it. Have you tried it yet?


Hi CajunGrl,

No I've never tried Vicoprofen.....is it like Vicoden but instead of acetominophen it has ibuprofen? I'll ask my doctor about it....I haven't been able to take Vicoden because of the acetominophen (very bad for the liver).

Thanks!
JoAnn
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 2/25/2010 4:43:57 PM (GMT-7)


CajunGrl
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   Posted 2/25/2010 5:51 PM (GMT -7)   
Hey 1bitten:)

I asked my doctor about taking something for the Epstein Barr and she said that the steroids may help. She said that some people completely recover taking steroids. I've never heard of that but I tried it anyway since I think I have adrenal fatigue too. It's actually helping the pain a little and I'm even sleeping better.

After I get all of this liver stuff fixed, i will ask to start valtrex. Was that what you were on?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
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   Posted 2/25/2010 5:52 PM (GMT -7)   
nasalady,

Yes, it has ibuprofen instead of acetominophen. I cannot take acetominophen either.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


merrygirl
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   Posted 2/25/2010 7:44 PM (GMT -7)   
sorry to hear your in pain. I have severe pain also. I can not function with this level of pain. I currently take oxycodone 15 mg 3x a day and wear a fentanyl patch 50mcg. It helps but I am not pain free. Oh yeah I also take cymbalta. I think the cymbalta is making my liver enzymes go up a little.

I just started taking tumeric 500mg 3x a day. I heard this is good for pain.

I also take magnesium and b12 by injections. I truley believe these are helping me.
I tried lyrica and neurontin and they made me suicidal. Savella made me so ill I landed in the ER!

I just started aquatherapy and the pain is flared up a bit. Do you have a picc line? Glutathione may help your liver. you can order it ready to use. email me if you want the info its really cheap.

I also did trigger point injections and they really helped my shoulder muscles. They feel really good. trying accupuncture. will let you know if that helps.

good luck, if it continues I would see a pain specialist if youre not already.

hugs,
melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


CajunGrl
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Date Joined Mar 2009
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   Posted 2/25/2010 8:36 PM (GMT -7)   
merrygirl,

Thanks for all of the information.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


merrygirl
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Date Joined Jun 2007
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   Posted 2/25/2010 8:39 PM (GMT -7)   
you are so welcome. I hope you find something that works!

melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


bucci
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Date Joined May 2006
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   Posted 2/25/2010 9:14 PM (GMT -7)   
1bitten 2x..how did you get rid of EBV and HPPv? what is CMV?

do you take magnesium?
hep c , lyme
Dad has lyme


Hockey Mom
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/25/2010 11:38 PM (GMT -7)   
I was diagnosed with Fibro in Nov 07. I started taking Lyrica and that has been a life saver for me. I do take alot - 150mg twice / day and it did take about a month before I started to feel the benefit. Now I only truly feel the pain when I Herx.

Others have mentioned Magnesium - that too has helped not only my fibro, but some of my other systems. My chest pain was horrific for a couple of months then I was given Imploded Mineral Water - which is a liquid from lava rock - filled with magnesium. Within 24 hours my pain reduced about 90%. Pain picks up substantially when I forget to take it. I wish I understood why!

Wishing you some relief!

Razzle
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Date Joined Aug 2007
Total Posts : 4151
   Posted 2/26/2010 12:18 AM (GMT -7)   
Magnesium is a natural muscle relaxer, it dilates blood vessels, participates in over 300 enzymes in the body, and is considered one of the essential electrolytes needed for proper function of the heart and nervous system. We would die without it, it is that essential. Chlorophyll contains magnesium, which means that most green colored vegetables (especially dark leafy green) will also be good sources of magnesium if one does not wish to take supplements.
 
Bucci,

CMV = CytoMegaloVirus - thought by some to be linked to Fibro and Chronic Fatigue Syndrome.

 

BTW, I test negative for all the viruses and have never had chicken pox or the vaccine for it.  I don't know if this is due to my wacky immune system or what, but the doctors are even surprised I don't test positive at least for HHV (they told me 98% of the population has been exposed to some variety of HHV).


-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

Post Edited (Razzle) : 2/25/2010 11:22:36 PM (GMT-7)


1bitten2xshy
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Date Joined Jun 2007
Total Posts : 850
   Posted 2/26/2010 6:24 AM (GMT -7)   
Yes alot of people test positive for HHV. I happen to have both HHV6A and HHV7. HHV7 is one of the toughest ones to get rid of, as well as the majority will not test positive for that one.

I have been on 3 different anti virals...however, could not handle Valtrex. Both Acyclovir and Famivir did the very best for me. I am on Famvir now as my "maintenance" abx.

I do faithfully take Magnesium. I use Mag Tab Sr, which I understand is in Dr. B's guidlines. I also take 2400MG daily of Fish Oil
 Co-Moderator
Lyme Forum


bucci
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Date Joined May 2006
Total Posts : 1489
   Posted 2/26/2010 9:39 AM (GMT -7)   
the whole magnesium thing is so confusing.
My doctor is telling me NO magnesium. and he tells me i will be on pain meds rest of life.

Is he thinking because no magnesium there will be more pain and would rather prescribe FENTYNOL instead of
magnesium????

he keeps saying lyme loves mangesium???

the magnesium really helped with constipation and now adding more pain meds and NO magnesium..I live on coffeee enemas.
hep c , lyme
Dad has lyme

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