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Posted By : Swansonmjs - 6/7/2011 1:58 PM
I have been experiencing this for about 2 weeks now. My arms esp. feel so sensitive - like the nerves are going to jump out of my body.
I think the only way to describe it is it feels like if you have a sunburn and your clothing or something (wind) brushes against it.
 
Anyone have this one?
Lissaj68
Fibromyalgia, Anxiety Disorder, Sad, GAD, Degenerative disc disease
Lexapro, Nortryptiline, Melatonin, Ambium, Gabapentin (Neurontin), Tramadal,Vitamins B, CALCIUM, D, FISH OIL, MAGNESIUM, Apple Cider Vinegar, TYLENOL

http://survivingfibro.blog.com/

"I have Fibro - Fibro doesn't have me"

Posted By : Myself 09 - 6/7/2011 2:49 PM
Periodically, when I am about to flare, or have done way too much.
Fibromyalgia DX 2005. Ulcerative Colitis, arthritis, TMJ. Family History of Fibro--2 out of 3 siblings diagnosed.

There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot.

Posted By : HappyCat - 6/7/2011 3:06 PM
Absolutely, especially after overdoing things.  I call these my "bubble wrap days" (wish I were wrapped in bubble wrap to protect me from co-worker's hugs,pokes,etc.) or the latest episode of "When Clothes Attack."  I have a few outfits I hold back for days like that (very soft fabrics, loose-fitting, no pockets or rough seams).

Posted By : Moonsinger - 6/7/2011 5:55 PM
Oh my god, that has been me today. Anything touching my ribcage/back was killing me. I was calling it my "vest of pain" since it only bugging me where a vest would sit on my body.

Posted By : cognizance - 6/7/2011 10:23 PM
Wow...I can't believe we experience such similar things! I have had that very "sunburn"feeling for years. especially on the out side of my arms. Triceps are the worst. I also have it on the back of my hands at times. When this happens I let my hands "air dry" as it hurts too much to wipe them on a towel.

Thanks so much for sharing this as I often wondered it was just me!

Posted By : donnaeil - 6/7/2011 11:03 PM
I endure this. It is call Alldynia. I love the chapter "When the skin attacks.

SSRIs and pain meds help this. Cold water, the type in the so called warm pool, can help a bit. Otherwise, I just do not know what will help.

Donnaeil

Posted By : Swansonmjs - 6/7/2011 11:10 PM
Even better a name for it
Lissaj68
Fibromyalgia, Anxiety Disorder, Sad, GAD, Degenerative disc disease
Lexapro, Nortryptiline, Melatonin, Ambium, Gabapentin (Neurontin), Tramadal,Vitamins B, CALCIUM, D, FISH OIL, MAGNESIUM, Apple Cider Vinegar, TYLENOL

http://survivingfibro.blog.com/

"I have Fibro - Fibro doesn't have me"

Posted By : nana68 - 6/8/2011 5:49 AM
It happens alot now but I can remeber it happening a handful of times a few years ago when I was still trying to figure out what was wrong with me and I remember telling my boss(we are friends)that it felt like my skin was burning from the inside out.
treacheal stenosis,fibromyalgia and who knows what else

Posted By : Red_34 - 6/8/2011 5:55 AM
I get it at random times on my thighs. It doesn't hurt too bad but it's very annoying and irritating!
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis~GAD-Klonopin (.25mgs)~Rosacea-Metrogel/Elidel~IBS~Diverticulosis~Fibromyalgia

Posted By : Snue - 6/10/2011 10:32 AM
I get that burning skin feeling.  Sometimes around my knees.  But a lot of times in places that clothing may rub (pants waists, edges of clothes that have stitching, bras, etc), but sometimes it is just in a random place.
 
That is a good description, like a sunburn, but with out the redness.
 
For the skin sensitivity I have with clothing, I have just discovered that chaffing cream and find it helps prevent it a bit.
 
Crazy stuff we have to deal with. smilewinkgrin
~~Susan~~
Dx 2002 Fibromyalgia
Also have RLS, UARS (like sleep apnea), hypoglycemia and arthritis (neck and knees).
Trying to stay positive and live one day at a time.

Posted By : Klambert1 - 6/10/2011 1:59 PM
I have had it around my elbow on top of my arm, but I was in a flare. It usually doesn't happen, unless Im flaring bad. Feels just like a sunburn. Weird. lol Sometimes I can even lightly rub my skin for a couple of minutes and the nerves in my arm get irritated and hurt, but it's not in the same area Im rubbing in. When I stop, it stops...now that is strange. haha.

KL

Posted By : mscrowbar - 6/10/2011 3:25 PM
I have something weird that happens to me that is a bit similar. My hubby will take one finger and very lightly touch me on my back, hips, or top of arms and trace a circle - he will go round and round in a circle until I have to tell him to stop because after about the 3rd time around a very painful (sunburn type pain) will radiate out from the middle of the circle to the edges of it. Its especially bad if he is doing this on or near a tender point. (He does this to tease me not realizing how much it really does hurt.)
Denita
***************************************

Fibromyalgia. Arthritis/bursitis/meniscus tears in both knees.
Cancer survivor

Posted By : LCook - 6/10/2017 5:42 PM
I know that one. My husband does something similar. No, they don't realize how painful it is. Mine also will put his cold hands on me after being out in the wintertime, not accepting that he might as well pour acid on me.

Posted By : Kookai - 8/20/2017 8:53 AM
Since the end of January/2014 I have been experiencing a burning sensation along the bottoms of my feet. Sometimes the toes are affected as well. There is no swelling. I am NOT diabetic. The bottoms of my feet turn dark red. My shins will burn also. The burning feels like a mild sunburn. The burning can last a short time or a few hours, depending on it's mood. The odd time, I also have pins/needles. Yes, I've seen a Neurologist, who blamed everything on my degenerative disc disease. Things weren't getting any better, so I had my GP send me to yet another Neurologist who clearly said "I don't think the L5-S1 severe narrowing is causing your burning". So, he ran new MRI tests., consisting of the lumbar, cervical, & brain. This was a week ago. Results are not known at this time. He has taken things a step further & referred me to a Rheumatologist., whom I see Aug. 30. I'm told Rheumy's are like Drs on steroids..they keep digging to get to the bottom of the problem. My symptoms are progressing. The muscles along my shoulders become very sore..I can touch the sore spots..& the soreness goes up the back of my neck & into the back of my head. I get a throbbing sensation in the back of my head when I get up from a sitting position or depending on how I'm sitting. My GP thinks these are 'tension headaches'. I have the odd burning sensation here/there on my back. The back of my knees are starting to ache, as are my hips. My research tells me I very well may have Fibro, but I can't self-diagnose. Interestingly enough, Solarcaine relieves the burning sensation in my legs, but I only use it when the burning drives me to wit's end. The Neuro is very interested in this. The original Neuro prescribed Gabapentin, but it did nothing for the burning, & I was NOT willing to take high doses of the Gabapentin. Killing the pain is one thing, but in my mind, it's the CAUSE that needs to be addressed. I've had some massage therapy for my sore shoulders, but it's expensive, & I can't continue with it. Heat applied to the back of my neck does help, but as I've mentioned, having this annoying feeling since 2014 end is enough. The headaches sometimes causes me to feel light-headed, not to the point of being unbalanced, but certainly not pleasant by any stretch. I do blame the sore muscles at the back of my neck for causing the headaches, but I do read that tension headaches can be a symptom of Fibro.
We all need to stick together. Anything you might offer in the way of information would be greatly appreciated. Hang in there!!!!!!!

Posted By : Ljm2014 - 8/20/2017 2:00 PM
I get this more with a flare.

I like my acupressure mat or pillow to calm things down..

It seems opposite when you are hurting to lay on sharp spikes..but it works..

My daughter is having acupuncture right now, and its definitely helping her with some odd pains, and she saw my physical therapist and he worked on her ligaments...

Lj

Posted By : Sherrine - 8/20/2017 2:31 PM
Hi, Kookai, and welcome! Fibro affects the muscles, tendons, and ligaments. The doctors are now thinking it possibly could be a neurological problem too because we seem to feel pain more intensely. The criteria for diagnosing is having muscular pain in all four quadrants of the body that had lasted for several months. It sounds like you very well could have fibro. I'm so glad you will be seeing a rheumatologist. Most of us do and they are good at getting to the bottom of things. But, make sure the rheumatologist believes in Fibro and treats fibro patients. There are still some doctors out there in the Dark Ages when it comes to this illness. I always suggest a board certified rheumatologist and, if they are Diplomates, that's even better. The rheumatologist will run tests to rule out other illnesses that have many of the same symptoms as fibro...things like lupus and Lyme disease. There isn't a good test for fibro so they do need to do this for the diagnosis.

Some of us do get the burning sensation, and we can have tingling, twitches, etc. I sometimes feel like water is running down my leg. It is a weird illness.

The sore spots you are touching could possibly be Trigger points. They are muscle knots sometimes caused by the fascia overlapping. I do Trigger Point Therapy on myself and that helps me a lot. My massage therapist showed me what to do. When I feel a muscle knot (they are very tender) I press on it as hard as I can stand and then massage the area. I repeat this and then move on to the next knot. I repeat this exercise several times a day if I'm having a problem in a certain area.

I fixed my frozen shoulder that way. I use The Trigger Point Therapy Workbook that I bought on Amazon. It has diagrams of the body and shows where the Trigger points can be found for the pain you are experiencing. For my shoulder, they were found in the upper chest wall, the top of the shoulder, right over the top of the shoulder, and also along the side of my neck...the same side as the shoulder.

I used to have bad neck pain and also pain running up the back of my skull. It hurt to turn my head from side to side. I discovered two large Trigger points...the size of small marbles...at the base of my skull. I used the technique I explained above and those knots got smaller and smaller and now they don't exist and I have no neck or head pain and can turn my head freely with no pain. It really surprise me that something that simple could fix the problem!

I use the buprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin that has made a significant difference in my pain. But, what works for one with fibro doesn't necessarily work for another. It's a trial and error type thing. But you will get many ideas on this forum if you find out you have fibro for sure. I also walk daily as a gentle form of exercise, pace myself when doing things, and get a monthly gentle massage. All of the above have helped me live a full and enjoyable life in spite of Fibro.

You might want to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. You just might see yourself there also.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Kookai - 8/21/2017 5:07 AM
Sherrine..thank you so much for your quick reply. I think you have 'hit the nail on the head' where my symptoms are concerned. As I previously wrote, I have been bothered with theses sensations since the end of January/2014.
The Rheumatologist I'm seeing is a specialist in that field, & also Internal Medicine. From the patient reviews I've read about her, she's very good., & some indeed have Fibro. I will put the 'bug' in her ear about Lyme, but I'll do it in a way so that it doesn't seem as though I'm trying to tell her how to do her job.
about odd sensations..I too have the odd sensation that feels like water trickling at the back of my leg. Even now, I sometime will put my hand on the spot, thinking it indeed is water, when of course it isn't. The tender spots on the chest are below the collar bone area & feel like I'm pressing on a bruise.
If I press some areas on the back of my head..there's a tender spot, but it feels as though it might be the muscle to the eyes? Does that make sense? I think the weirdest sensation is the soreness at the base of the skull, on each side. Again, if I press on the spots, it feels quite tender as though I were pressing on a bruise. If I turn my head a certain way, it's quite tender.
At times, the burning skin sensations has me at wit's end. All of this started happening just out of the blue. In Jan./2014 I was sitting quietly, then it felt like someone was running a thread across the top of my ankles. Of course, it was a ticklish feeling..& it was happening on both ankles. This went on & off for several days, then suddenly one evening, both feet felt very hot. I looked at them & saw they were very pink, then a short time later, the pink & heat went away. Things progressed from there. At the time, I was seeing the Dr. I learned to dislike intensely. His Nurse Practitioner wasn't much help either. I was told to wear compression stockings; which I did, & that caused me to wind up with badly swollen legs during a trip with my musical group. My friend pointed at my legs & said.."get those darn stockings off..NOW". I never wore them afterwards. I was bounced around left/right & center trying to find out what was going on with me. I have also spent thousands of $ hoping to find the culprit, thinking that perhaps it might be something small. Once the pins/needle sensations in my legs I knew something was going on. You're aware of the rest of my story.
As of this morning, I still don't know the results of the MRI scans. The MRI was done Aug. 13. My best friend has been a pillar of strength for me, & has said that the Neuro who has referred me to a Rheumatologist was giving me great attention rather than boosting his own ego & being in control of my situation. I wasn't sure just what tests a Rheumatologist would run, but you have mentioned this to me. The Neuro ordered the usual, ESR..CRP, WBC, RBC, etc.etc., Of course the results were normal, BUT I do believe the Rheumy will run more extensive blood testing, i.e. ANA, ENA, & other things. Actually, I'm a little surprised the Neuro didn't order that, whereas the previous Neuro did. Again as I've previously mentioned, this Neuro seems much more thorough than the one who I originally saw, & who blamed everything on what's going on in my spine. She didn't even mention a Rheumatologist!!!!!!
The headaches I get truly bother me as well. They are at the back of the skull, & make me feel lightheaded at times, along with nausea. I don't always feel nauseous, but mostly do. They can last just a few hours, or most of the day. I do blame them on the sore stiff muscles at the back of my neck (those muscles at run up into the back of your head),but from what I've been reading, this too can be all a part of Fibro.
Some articles I've read have people writing that they've seen a Podiatrist, who 'diagnosed' them with
Neuropathy. I don't know about where you live, but here in Canada, Podiatrists are NOT medical doctors.
They can write certain prescriptions, do certain types of surgeries on the feet only, but they are not recognized as medical doctors. Our medical insurance does not cover visits to Podiatrists again because they are not medical doctors. The person who wrote the article was finally seen by a Rheumatologist who in turn diagnosed them with Fibro. This took her/him down the path of finally feeling better!
Sometimes with me there is no real trigger..I can be sitting relaxing, then suddenly my feet will begin to burn. Then my shins may burn slightly too. Again, it's 'whenever the mood strikes it'.
Thank you once again for your very informative note. I shall be watching the forum for further information. Again, I do not want to self-diagnose, but this morning, I think even more so that I have Fibro. I need an answer.

Posted By : Sherrine - 8/21/2017 6:38 AM
Try pressing and then massaging those tender spots at the base of your skull. I did when watching TV. It can't hurt but it could help! Your neck stiffness and the headaches could get much better. Mine did and other members who tried this got relief also.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Kookai - 8/21/2017 12:22 PM
Yes, I have tried massaging those tender spots at the base of my skull on both sides. It does help..in fact, it really helps alleviate whatever headache I may have.
I saw my GP this morning..he has the MRI results, but of course the Neurologist has not notified me as of yet. The GP said there is arthritis in my spine, & some things going on at C4-C5. I was concerned about the brain scan part, & he said either unremarkable or remarkable. I then said "what's that?". He replied with.."its normal". The part that's bothering me is now I'm not sure if he said UNremarkable or REmarkable. Silly me, I don't want to be stewing on something I don't understand. I adore my GP & have complete faith & trust in him. I'm sure he wouldn't say 'normal' if there was a concern.

Posted By : Kookai - 8/21/2017 12:39 PM
2.39PM...further to my earlier post. I was able to contact my GP's secretary & she told me the brain imaging portion of the MRI says UNremarkable. So, I feel much more relieved!!!
Now I will wait 'til next week to see the Rheumatologist.

Posted By : Sherrine - 8/21/2017 6:42 PM
thats pretty good news. The rheumatologist should be able to help the arthritis part. You are getting there!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Kookai - 8/22/2017 4:53 AM
Thanks, Sherrine!!!
I was thinking about what I'd written a day or so ago..about tender spots. I hope I haven't confused anything, but the spots I make reference to are tender..I do not have pain that shoots from them..just that the spots are tender. The burning I describe does not come from those spots either. The burning is in my feet & shins. Where the muscles on my shoulders are concerned, I do in fact have arthritis in my left shoulder, & movement in my left arm isn't as good as in the right. I have had chiropractors tell me the problem with the muscles on the tops of my shoulders is mostly caused by posture. I try my best to sit properly at the computer, but after a few minutes, I can feel my shoulders tightening up, & the muscles on the back of my neck become sore as well. I do wonder if the muscles on the back of my neck (that go straight up into the back of the head) might be so tight or inflamed that this is what's causing the headaches (thumping at the back of the head). My GP yesterday said that the degenerating discs in my neck wouldn't cause the headaches, but of course the muscles would. I've done some research on this since seeing him, & I'm finding the opposite; that indeed degenerating discs CAN cause the headaches. So I'm confused now more than ever. When speaking with my best friend, I told her that the best thing now is to just sit tight 'til I see the Rheumatologist. ESR &C-Reactive Protein levels in the blood (bloodtest June 2) were well within normal limits, which is an indication that there wasn't any inflammation..but I know things could have changed since then. I also made mention to her that now I'm a little nervous of seeing the Rheumy (although I WILL keep that appt), because I'm a bit scared of what she might find. As previously mentioned, the Neuro did not order ANA, or ENA testing when he sent me for bloodwork to be done. Do you think the Rheumy would do this? It makes sense to me, & do you think there are other things she might order that the Neuro did not?
Thanks for all your support. I means more than you know.

Posted By : Sherrine - 8/22/2017 6:39 AM
Trigger points feel like a bad bruise and you can sometimes feel a little round bump under the skin. That's a muscle knot. You don't know you have these unless you press on them. They are very tender. My massage therapist told me to press on these spots and massage it and repeat and that helps relax the muscles.

This is what I did for my frozen shoulder. I couldn't lift my arm above my shoulder, couldn't put it behind my back, and if I reached for something I would get shooting pains down my arm. That is all gone now since I used the Trigger Point press and massage technique. I can now lift my hand and arm way above my head and high behind my back!

You said you had a good rheumy so she will be Thorough. You might not require the tests you are talking about but I would ask to for Lyme and lupus tests since they have many of the same symptoms of Fibrofibro. I don't think she would be offended with that. After all, YOU hired her! She is working for you to find out what is causing your problems and you are paying her for that service. It's your body.

My rheumy is board certified and a diplomate. My first appointment with him was three hours long. He took an extensive family history then had about twenty x-rays taken in his office and lastly took eight vials of bloodwork. He also sent me for two MRI's of my spine and hips. I was barely able to walk when I first went in so my problems were different. I was diagnosed with fibro and ankylosing spondylitis along with sacroiliitis.

I sent a friend to him. She had gone to several doctors and they didn't know what her problem was so I told her to try my rheumy. Her first appointment also was three hour long. And, within a week she had a diagnosis. She has a rare illness called Still's disease. I've never heard of it but a good rheumy knows these things. She now is getting the help she needs.

Please do me a favor. Please use paragraphs. It's extremely difficult to read one long paragraph and that might be why you aren't getting more responses. People don't generally read a long paragraph. I put two spaces between paragraphs and it keeps one from losing their place when reading a post. Thanks!

Sherrine


Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Kookai - 8/22/2017 10:04 AM
Hello again,Sherrine.
Thank you for your helpful suggestion of writing in paragraphs. The idea never entered my mind. smile

Yes, what I think are 'trigger' points do feel like a bad bruise when I press on the spots, & there's a little bump under the skin, especially the sore muscles on my shoulder areas. Where the knees are concerned,
it's just a tender spot on the insides of my knees. It's the same for the insides of my elbows..just tender spots, but no round bump.

The Rheumy I'll be seeing would be my first appointment with her. From the reviews I've read about her on ratemds I think I'll be in good hands. It wasn't me who hired her, I'm being sent to see her because of a referral from my Neurologist. The MRI's were done Aug. 13 & I don't know if she'll have a copy of the results when I get to her office. Perhaps the Neuro sent copies, but I'm hoping to have the results by way of "MyChart" from the hospital where the MRI's were done so I could take a copy with me for her to see. She is a board certified Rheumatologist/Internist.

I have considered asking the Rheumy to test for Lyme, & Lupus. I'm with the understanding the either ENA or ANA tests for Lupus, as well as Scleroderma, etc.etc. I'm not sure how to go about asking her to do this without making it sound as though I'm trying to tell her how to do her job. Perhaps I should just bite the bullet & downright ask. Example: "Could we please check for Lyme and Lupus"? How does that seem to you?

Yes, you're so right. The Rheumy is working for us (or me in this case). I'm sure if there's anything to be found, the Rheumy will find it. They're like a physican on steroids...they keep digging 'til they get an answer.

I wouldn't be surprised though, that things may be blamed on what's going on in my spine, especially the cervical. There's arthritis for sure, which is what my GP told me yesterday. Just to what extent, I don't know. And yes, the muscles on the back of my neck become tight & sore. A while back, I was a little concerned that I might have PMR, but I hardly think so now. More than one chiropractor has told me about my shoulders, & blame the soreness etc. as being postural along with what's going on.

Thanks again for all your help. If you have anything further to add, it would be most welcomed.
Enjoy the rest of the day!!!

Posted By : Sherrine - 8/22/2017 1:56 PM
You are still hiring the rheumy because you will be paying the bill..you and your insurance company. 😊

You can ask if any of the tests check for lupus and Lyme disease. You can say that you have heard of people that were diagnosed with fibro and it turned out to be Lyme or lupus. And, yes that has happened on this forum! The symptoms are so similar and it's so easy for some doctors to blame everything on fibro. But, since she is board certified and also and I ternist she most likely is very good. I've heard of a person diagnosed with Lyme disease and it turned out they really had fibro! So it goes both ways. Perhaps these two illnesses have already been ruled out too but no one has told you. It can't hurt to ask.

I have ankylosing spondylitis along with fibro. AS is a type of arthritis that affects the spine". Perhaps this is what is going on with you also. Here is a link about iT.

/www.niams.nih.gov/health_info/ankylosing_spondylitis/

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 8/22/2017 2:11:48 PM (GMT-6)


Posted By : Kookai - 8/22/2017 2:22 PM
Hey Sherinne...

The Gov't will be paying the bill. We have Provincial Health Care, whereby we present a card when we see the Dr., & there isn't any money exchanged.

For sure, I'll ask if whatever bloodtest she orders will be for Lyme and/or Lupus.

You also offer a good point in suggesting that I tell her that I have heard of people being diagnosed with Fibro when in fact they had Lyme or Lupus because the symptoms are so similar. As you said, she very likely will know what to do since she's board certified & also an Internist.

My GP did say that the MRI results mentioned arthritis in the spine, but he didn't say WHERE. I know for sure it's in an area of the cervical discs, but I won't know where or how bad 'til I get the copies of the MRI results myself. Likely, that won't happen for another week or so.

IF the Lyme and/or Lupus has been ruled out, but nobody has told me, I would find that very odd, especially if I wasn't told I was being tested for it. Surely my GP would have said something yesterday if that were the case.

lgG, lGM and lgA are all fine in the bloodwork. As mentioned previously, B12 levels are great. ESR & C-Reactive protein were fine as well. A/G Ratio, Gamma Globulin, Alpha 1 Globulin, Beta Globulin, Albumin Electrophoresis, Protein Electrophoresis, & Alpha 2 Globulin...all normal. I don't know if you understand all of this or not, but this is everything the Neurologist had tested in the bloodwork.

I will check to read about the link you send with me. Thanks for sharing!!!! smile

Posted By : Sherrine - 8/22/2017 3:16 PM
The ESR and CRP would be high if you had ankylosing spondylitis. These tests show inflammation and AS is an inflammatory illness. Fibro is not consid inflammatory.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Kookai - 8/22/2017 3:45 PM
Ok, so I'll assume I don't have ankylosing spondylitis. Thanks for the information!! smile
"DON'T DRIVE FASTER THAN YOUR GUARDIAN ANGEL CAN FLY'

Posted By : Kookai - 8/28/2017 9:19 AM
Hello Everyone....
I'm getting very close to my Rheumatologist appointment, which will be this coming Wednesday (Aug. 30).
It's certainly my plan to tell her about the tender spots I have. I must clarify though, these spots are tender..I don't have pain emitting from those areas at all..just that they're tender.
I've read in some earlier posts about burning sensations. My Neuro mentioned the possibility of Erythromalalgia, but I honestly do not think I have that. I don't have the terrible swelling associated with it, nor do I have the pain. Yes, the bottoms of my feet become quite red..crimson in fact, & they feel very very warm, but not warm or hot to the touch. As for the 'pain'., I described it as a mild sunburn which to me is not pain. I will also tell the Rheumatologist about this as well,unless it's in notes sent to her from the Neuro.

The Neuro did run blood tests, but they came back absolutely fine. I'm not sure what a Rheumy would test for, but I'm sure she would test for things that perhaps the Neuro did not. Does anyone know what sort of things the Rheumy would ask for in a blood test. I'm expecting ANA & ENA which the Neuro did not have tested.

The pins/needles I'm experiencing are still in existence. Some days are worse than others, but in all honesty, I don't feel the need for medication. I fail to understand that although things may be going on in the spine...how do they halt the spread of symptoms? Can they not shut them off to a degree. In my opinion, medications would just mask the problem,not elminate it. I worry about the spread of the nerve problems. Thank goodness for my best friend.

If any of you have anything further to add in the way of information, I'd be most grateful.
Wishing you all a wonderful day!!!!
"DON'T DRIVE FASTER THAN YOUR GUARDIAN ANGEL CAN FLY'

Posted By : Kookai - 8/29/2017 4:51 AM
Thanks so much for sharing your information with me. I'm at the point now where I'm nearly demanding they find out what's going on with me. A guessing game of over 3 years is not acceptable. '

While there may be things going on in the spine..I know for sure there's narrowing in a nerve opening in the neck, I haven't heard back from the Neuro about the MRI I had Aug. 13. No news is good news..but
has the situation worstened or what. The pins/needles & burning has to be caused by something. I am not diabetic, have not had injury, etc.etc. In his report, the Neuro stated the EMG does not test for small fibre neuropathy. The question in my mind is if a patient is suffering this long; why do they not also test for small fibre neuropathy, or do a skin biopsy?

I'm grateful to have been referred to a Rheumatologist to see if there's anything going on in the immune system. Yes, I have some tender spots..the insides of each elbow..points on the back of my neck, front of chest, the insides of both knees, BUT I do not have pain that comes from these areas at all.

My main 'beef' is the burning in my feet, along with the pins/needles that happen in my legs. Although the pins/needles are tolerable, they're very annoying to say the least, & have been going on for far too long. I know nerves can't be cured, but further damage can be prevented; just how I don't know. I fail to understand just why Drs are quick to blame things going on in the spine, but they don't seem to do anything about stopping progression, or do they in fact know how to stop progression.

I took Gabapentin a about 1 1/2 yrs ago. It did help the pins/needles to a degree, but in all honesty, I truly didn't need the Gabapentin, & it certainly didn't do a thing for the burning.

So, I'm off to see the Rheumy tomorrow. I'm expecting a requisition for bloodwork to be done. The Neuro did send bloodwork results to her (I'm sure he would have done this), but I also do think the bloodwork she might order would have some differences. After all a Neuro likely doesn't know all the features of bloodwork to do with rheumatology.

Anything any of you might offer further would not only be welcomed, but very much appreciated.

Enjoy the day to the fullest!!!!!!

Posted By : Kookai - 8/31/2017 8:56 AM
Hello everyone!!!

I saw the Rheumatologist yesterday. She performed a very thorough examination, & didn't mention anything about Fibro at all, so I'll assume that's not what I have.

She did order bloodwork, checking for ANA, Rh Factor, ESR, & C-reactive protein along with the usual in CBC. So far this morning, all the results are within normal ranges, except ANA which hasn't come back yet. If that falls into the noramal category, then I very likely don't have any autoimmune issues.

She did tell me that her rule of thumb is that "no news is good news"..I won't be hearing from her because of normal results or something very minor. Of course if there were anything way off the charts, etc...that would be different.

So, onward & upward...I have my MRI scan results, & will post in a different area of the forum.

Thanks to all of you for your valued support.

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