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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 8/29/2007 2:02 PM (GMT -7)   
My toe joints, mainly the joints that connects to the metatarsals, feel like someone has come in the night and inserted fire or an intense burning acid right into the middle of the joint. This has happened on and off for maybe 4 months, mainly in my right foot. (This is the foot that first experiences a bit of neuropathy that tells me I'm overdoing something.) As the day progresses, the joints become more and more bothersome as the pain radiates outward from the joint. (Ibuprofen does control the radiant pain.)

Just this week the 'acid gremlins' have added some of the joints of my right hand as attack sites. This is also an area that reacts w/neuropathy when lupus is acting up.)

So far I have not been able to identify anything that correlates with this pain -- not cold feet or cold weather, no particular activities, no other lupus symptoms seem to flare up....I don't know if this is some kind of Arthritis or Lupus symptom or something else altogether.

Does anyone else experiance burning deep in a toe or finger joint like this? There is no swelling, no calcium buildup, no heat or cold at the affected joint.....

If so, what diagnosis and/or treatment has helped? (See my signature for my current medication list.)

Thanks for your ideas!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 8/29/2007 2:16 PM (GMT -7)   

Hi,

Has anyone checked your Vitamin B12 levels recently?  Deficiency can cause peripheral neuropathy symptoms.

Also, I sometimes get burning feet when I eat potatoes.  Maybe a food diary would help you figure out any patterns?

I hope this helps - take care,

-Razzle


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/29/2007 2:41 PM (GMT -7)   
Lynn,

It does sound like its peripheral neuropathy. I get the tingling burning toes too and sometimes it "crawls" up into my legs but always starts in my toes. Feels like bugs crawling around and eventually starts to burn.

Razzle is correct about B12 but my levels are okay. My doc says mine is definitely caused by the Lupus due to the inflammation surrounding the nerve tissues.

I hope you can get to the bottom of it (pun not intended :-).

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 8/29/2007 3:03 PM (GMT -7)   
The (pins/needles/numbness type) neuropathy has already been proven to be part of my set of lupus symptoms...I'm certain my B12 and food are okay.

I am having burning pain in the small joints of hands and feet, while the pain radiates outward, the joint pain never changes.

Des, do your toe joints continue to "burn" when the tingling/bugs goes up your legs? Do the legs themselves start to burn? Thanks,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/29/2007 4:26 PM (GMT -7)   
For me, the burning actually comes after the tingling/bug feeling and it does continue. The toes and feet and the upper part of my legs are more affected than my calf area. I don't get the neuropathy in my fingers as bad, just more pins and needles and tingling in my hands but never had the burning.
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/29/2007 5:00 PM (GMT -7)   
Lynnwood, I also get the burning pain pretty bad and like Des, mine has been determined to be peripheral neuropathy. My doc gave me a low dose of neurontin to help with my burning pain and it does help. THe burning doesn't totally go away, but at least my affected areas (mostly feet and hands) don't feel like they are on fire. I can't take a very high dose of neurontin because I get weird side effects. Recently my rheumy and I decided to see how I would do off of the neurontin, so I could be on one less med and the burning pain came back fairly quickly and it was pretty bad. I went back on the neurontin and the burning is much more bearable now.

I have heard of both neurontin and lyrica being used for peripheral neuropathy. Hopefully your rheumy can help figure out something to help keep the "acid gremlins" away. Take care and let us know what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 8/30/2007 9:17 AM (GMT -7)   
I've not heard or thought of neuropathy inside the joints before.

If anyone has a resource that talks about this could you please direct me there?

Thanks,

Unfortunately I just found out yesterday that my (very good and well-liked) rheumy is going to be MIA for a while as he has to have a heart transplant.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/30/2007 9:37 AM (GMT -7)   

I found this... hope it helps :-)

Connective tissue disorders and chronic inflammation can cause direct and indirect nerve damage. When the multiple layers of protective tissue surrounding nerves become inflamed, the inflammation can spread directly into nerve fibers. Chronic inflammation also leads to the progressive destruction of connective tissue, making nerve fibers more vulnerable to compression injuries and infections. Joints can become inflamed and swollen and entrap nerves, causing pain.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/30/2007 9:54 AM (GMT -7)   
Lynnwood,
My mom has that, it eventually went up to her ankles. She later developed shingles. If you have not been vaccinated you may want to talk to your doc about it, once you get it you can't get vaccinated. Not that its related, but it does seem an odd coincidence so I thought I'd mention it. Diabetes and back surgery cause this and it can be very very severe, like my mom has. I'm trying to get her to switch to klonopin, which works for restless leg. She is neurontin, which is not working, and lyrica, both which she doesn't like and doesn't want to take due to psych side affects. Restless leg can feel like that, and is horrible, feels like bugs under your skin, and it happens at night. The rest of my peripheral neuropathy has gone from bad pain to numbness now, guess the damage is done. Hope you get some help and feel better soon.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/30/2007 5:55 PM (GMT -7)   
Hi Lynnwood . . . so sorry to hear that your doc is having such a huge surgery. I hope things go well for him.

Your burning in the joint sounds like something I had many years ago. Mine was in the joint of the thumb and felt much like you described. It last for quite a while and the doc tried to check for gout by attempting to draw fluid from the joint to check it, but was not successful. The burning thumb and big toe eventually disappeared. I have heard of people with lupus having joint pain similar to gout . . . I hope you get some help with that . . . I have no clue how they treat it.

Keep us posted and I hope someone who can help will see your post.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator


Gagirl1
Regular Member


Date Joined Aug 2007
Total Posts : 31
   Posted 8/30/2007 6:53 PM (GMT -7)   

I get burning in one or both of my hips and shoulders and there is no pattern. I notice it if I am walking on the treadmill and for me it lets me know that I have an increase of disease activity coming. I just rest and go at it again. My feet don't burn, but in the morning I have pain on the bottom of both feet, have to walk around in my favorite bedroom shoes until my meds. kick in. I Take neurontin for neuralgia and also have neuropathy in my feet and hands.

I am new to this forum and posting things and don't know if my last post made it to you or not. We share the same Rheumatologist. He is the best and the most honorable man that I know. I have to believe in my heart that he will be up and running next year. I usually see him every 4 to 6 weeks. Every now and then I get an 8 week appointment. He has fought very hard through the years to keep me living and in the land of the living.

I saw on the forum discussion of excercise, massage, and meditation. I do Bodyflow, it is a combination of Tai Chi, Yoga and Pilate's with relaxation at the end. I love it and it is easy on the body.

I have really severe osteporosis and was prescribed Forteo injections in June. Medicare did not cover the shots. After much paperwork, I got  sample injections and I had a reaction to the drug, I usually tolerate most anything.  I asked my doctor for another try with Fosamax and very committed weight bearing excercise. I have so many meds. that the Fosamax was just hard to remember every single week. I have fractured five times. Though my diet is good and full of calcuim/D. I have been on steriods for almost 9 years averaging 20 mg each day and at times up to 40 mg. for almost a year everyday in 2000 to get my heart and disease under control. I am determined to build my bones back!

Hope your feet get better. Can you do Reflexology?

Nice to meet you all.

 

 

 

 

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 8/30/2007 7:48 PM (GMT -7)   
Thanks everyone. I think it's going to be a looonnnggggg weekend here. Kinda' in shock about my dr and also somewhat upset to think that this burning is neuralgia.

I'm a bit lost as to how to get appropriate medical treatment....I really, really trust my rheumy and can't hardly conceive of finding another, even temporarily. I'm sure as I calm down I'll get a clearer view of what to do next.

Thx Gagirl1 -- glad to know I'm not the only person who thinks our Dr is a wonderful fellow.

Cheers to all, thx again,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/30/2007 8:04 PM (GMT -7)   
(((Lynn)))
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/30/2007 8:27 PM (GMT -7)   
*sigh*

Lynwood . . . I hope your current rheumy will have someone to replace him (who has access to your records) while he is gone. Not sure that's realistic . . . but I sure do feel for you.

I'm not as sick as most of you and I'm having to replace my rheumy and my pcp . . . it really stinks!

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/31/2007 7:41 AM (GMT -7)   
I'm really sorry to hear about your rheumy - he sounds amazing. I really hope the surgery goes well for him. I'm guessing this is going to be hard on a lot of his patients. Did he leave info about who he would like his patients to see while he's gone? Usually they try to pick someone who is similar and who they think will take good care of their patients.

Hang in there and you'll be in my thoughts over the weekend.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/31/2007 8:25 AM (GMT -7)   

Hi Lynnwood, I don't know if this is what you mean but I have a chronic pain inside the joint in my toe right next to my big toe on my right foot. It's weird it feels like it's freezing hot if that makes any sense. It also feels like the outside of my toe(s) have a nylon stocking over them. The pain is there all the time. I do get the burning up my leg(s) which is from inflmation. It gets so bad the I almost swell out of my skin literally. I have had my skin split open and bleed from the swelling. Fortunately those things disapate within a couple of weeks.

I hope you get some releif

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


OneAnalogy
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/17/2016 11:07 AM (GMT -7)   
I realize this thread is very old but I actually came across it as I was searching to see if others had same description. I have tried to describe to people that it feels as if acid is burning in joints. I had a hand injury and surgeries, the nerve pain in the hand I can differentiate, the arthritic feeling, the dull aching pain from where broken/fractured, I can differentiate all these pains in the hand but the burning as if acid is eating from the inside no one has said. I have it in just about every joint now and was Dx with Lupus years after the hand. It is in elbows, finger joints, knees, feet, etc. It is usually followed my more difficulty in moving said joints and overcomes whole body taking all strength of mind make self move.
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