Migrating pain

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Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/20/2009 11:07 AM (GMT -6)   
I'm not 100% convinced yet that I actually do have Lyme's...I have multiple auto-immune issues that I've had for years before this all started and auto-immune problems are in our family; the doctor is admittedly not a Lyme's 'expert' although she is an alternative MD that is/has been treating other Lyme's patients; I went to her thinking I had a hormonal problem because I've been tested for pretty much everything else and she said 'this and this' are off (to her, but they were well within normal range according to my 'conventional' doctor's lab results), so I never really even told her my WHOLE story - and it IS confusing when you add in my past history, on-going issues prior to this mess and then these symptoms 'new' symptoms that came on out of nowhere (4 years ago now); and last but not least, my Elisa test results were negative one month after symptoms started, negative again about 1 1/2 years ago, and this summer my Western Blot and Elisa (Igenex) were also negative - Western blot band 41+++, band 31 and 34 Indeterminate, bands 45, 58, 66+, but she said this WAS positive.  At first you are so happy to FINALLY have a diagnosis, but the more I read and think about it, the doubt really sets in - especially when it is all so costly at my own expense.  None of it makes any more sense than the symptoms that came on out of nowhere...and I have been reading a LOT, so I 'get' everything that we are told, but in the back of my mind I just keep wondering if this has been something auto-immune all along and just hasn't fully surfaced.  I know someone who has MS (and it really is MS, not Lyme's), who suddenly developed problems over 30 years ago.  She went through tons of testing and was told they didn't know what caused it and not to worry about it.  Well, over that 30 years her problems got steadily worse, but no sudden jumps and no doctor ever caught it or diagnosed her.  Well, about 5 years ago, her problems being quite pronounced by this time, she was told she's had MS all along!  She also has/had auto-immune issues in her family tree.
 
So to the title of my post...when my problems started completely out of the blue 4 years ago, I woke up one morning with a stiff elbow.  It really was worse than stiff, but I thought it was a pinched nerve - it really was useless, couldn't extend it all the way without severe pain and no strength whatsoever.  Continued to get worse, and after one month I decided to call my doctor's office because people were telling me it sounded like bursitis.  Yep, that's what they said it sounded like.  Well, the very next day, about mid-day my other elbow started to hurt, and within hours additionally both wrists, knees, ankles, fingers and toes started hurting too.  It was VERY strange to say the least.  I'd have severe pain in my knee and seconds to minutes to hours later, the extreme pain would be in a different joint.  Sometimes the extreme pain would be in multiple joints at the same time, but some of the time it would be severe in one and to a lesser degree of pain in one or more other joints.  It just moved around CONSTANTLY.  Then, I got very dizzy.  Within weeks to months other symptoms cames on out of the blue and never left!  After going from doctor to doctor and only one of the Lupus tests being slightly positive, the doctor's would tell me that they don't know what I have, but it didn't fall under their area of expertise and the symptoms appeared to be "independent of each other."  I started reading.  A lot.  All of these were symptoms of Lupus.  All of these were symptoms of Lyme's.  I have Lupus in my family history.  I know that a huge proportion of people with Lyme's don't know they've had a tick bite and never had a rash - I fall into that group.  I was, however, on vacation in an area of the midwest that is on the Lyme's map earlier that year.  I also had very peculiar, unexplained symptoms about 15 years prior to this - that in hind sight TO ME, could be related.  They lasted about 2 weeks and I went to the doctor at the tail end and was told they didn't know what it was.  It went away and nothing even similar until all this started 4 years ago.
 
After all this came on 4 years ago, it was really bad the first year, then got much, much better.  I went on with my life, except for some scares over following year where it would be severe again and then diminish after a few days.  about 2 years ago it started up again and never went away since. 
 
My main question here is about the migratory pain...was anyone else's pain pattern anything like mine?  Initially, the pain was felt in the joints and then I realized it was somewhat in the soft tissues too.  Now it's harder to distinguish where exactly the pain is coming from - bone/joint or soft tissue...it's more of a radiating ache kind of pain, rather than a sharp pain in a difinite spot.
 
Sorry this is so long, but that's my story and I'd really appreciate some input on the pain pattern.
 
Thanks!
 
    

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4119
   Posted 12/20/2009 6:02 PM (GMT -6)   
"My main question here is about the migratory pain...was anyone else's pain pattern anything like mine? Initially, the pain was felt in the joints and then I realized it was somewhat in the soft tissues too. Now it's harder to distinguish where exactly the pain is coming from - bone/joint or soft tissue...it's more of a radiating ache kind of pain, rather than a sharp pain in a difinite spot."

This is a good description of the wandering leg pains I've had for over 30 years that the LL docs I've seen agree is Lyme. Also, your IGeneX results are very suggestive of Lyme and it would probably be a good idea to be checked out by a truely Lyme-Literate Physician or Naturopath.

Take care,
-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 trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/20/2009 9:27 PM (GMT -6)   
Thank you, Razzle. That does help me to know at least someone else has had a similar pain pattern, and that it was explained as Lyme's. I haven't seen that discussed here, but I haven't been on all that long. I know I should be seeing a true LLMD, but there aren't any really close to me. I did get the names of some in the neighboring state, and if I start feeling like she doesn't know what she's doing or I'm not getting better, etc., I will consider contacting one. You know how that goes, we do what we have to!

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/21/2009 7:47 PM (GMT -6)   
Hmmm...no one else with migrating pain? Maybe this is not so common with Lyme's?? Please, if you have/had migrating pain related to this, please respond. I'm really trying to determine if I'm on the right path or wasting my money on a wild goose chase...

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/21/2009 8:53 PM (GMT -6)   
Tala3 - With me, pretty much something hurts every day. Before I started treatment I had terrible body pain all over, but often it was more intense in a single area, and then later in the same day or on another day, it would be intense somewhere else. I have sciatica in both hips, but never at the same time. I have foot pain, usually in the right, but can also be in the left, and again, never in both at the same time. I have a lot of head, shoulder, and back pain, and often have pain radiating down the backs of my arms. My pain really isn't in my joints, though my joints crack a lot. It's more like nerve and muscle pain. Is that what you think of as radiating pain?

I can understand a desire to not have Lyme disease; I was asking my LLMD two months into treatment to recheck my test results because I still couldn't believe it. When you have other plausible explanations for your symptoms based on family history, it must be even more difficult to accept. If you would be more comfortable with a diagnosis of Lyme if it were made by a LLMD, then that may be a good reason to find an out-of-state LLMD. If you are like a lot of us, and have been undiagnosed and misdiagnosed for years, and have not been taken seriously, it is easy to understand a reluctance to believe what a doctor is telling you. I had a difficult time with that. Ultimately, though, I decided that I had to trust someone, and the LLMD was well respected, so although I still don't like to believe it, in order to move on and get into treatment, I decided I would trust him until I had a reason not to. At least he took my symptoms seriously and looked for an answer. Now that I'm taking meds, etc., I'm feeling much better. Waaaaaaaaaay short of "normal" but at least I'm functional again most of the time.

I hope you find an answer soon that will feel right to you.

Rose
I have Lyme; it doesn't have me.


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/22/2009 12:10 AM (GMT -6)   
Thank you, Willowrose, I appreciate your response. It's really not a matter of not accepting it (I was seriously elated when I got this diagnosis rather than the other possibility). I have other chronic life-long illnesses, and I've already accepted I've got another lifer, so I'm well past the shock and denial that this could be happening to me.

I was already on one wild goose chase early on, and was duped into believing it was allergies causing all of these problems. Everything was explained as allergies for two years - and I was taking very costly sublingual allergy meds that of course weren't covered by insurance "because they don't believe there's enough evidence that they are effective, but we're getting closer." I later found out that they had been saying that for 10 years. I also started to notice a lot of contradiction, and every time I made an appointment to discuss my concerns, I was required to AGAIN go thru the costly allergy testing (I went through it probably 5-6 times in two years), and by the time I met with the doctor himself, he was telling me how much better I was doing and I never really had the chance to truly discuss my concerns with him - his nurse did most of the talking. He charged a mighty hefty fee for phone consults and dominated the conversation with what he wanted to talk about and so I never really got a chance to actually speak! I requested copies of my doctor reports...he actually noted in MY records the examples he gave of other people who have had this same problem - word for word. Then when I was starting to have a lot of pain again 2 years ago I made an appointment with him - it was well past the time the allergen he claimed was causing my problems would have been even possible - he then claimed it was now caused by a different allergen! Much longer story and how I came to determine this was bull, but you get the picture. I've already spent thousands of dollars out of my own pocket and got absolutely nothing out of it. And he was wrong. I'd feel sooooooo much better if the test was actually positive; to me this is just another doctor basically making guess on my dime - and if she's wrong, oh well. Yes, I could start over with a true LLMD, but those initial appointments are very expensive, not to mention the other aspects of traveling a great distance to see a doctor. I've already talked to 2 on the phone that are closer to my area, and just got a very weird and untrusting feeling from both of them - kind of like they were diagnosing me on the phone and never even heard my history, etc. I'm just trying to gather as much information as I can to make the best decision for myself.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/22/2009 2:23 AM (GMT -6)   
Tala3 - I'm sorry you are having such a difficult time getting a diagnosis that feels correct. Given your history, it's understandable. But, if you aren't comfortable with the clinical diagnosis of Lyme from the doctor that you are currently seeing, and are wary (understandably) of traveling to see an expensive LLMD out of the area, and don't trust the LLMDs who are closer to you, I can't think how you will get to a point of either writing off Lyme as a possible cause of at least some of your symptoms, or believing that it is, especially since many of the symptoms overlap with Lupus. You are not alone in having a history of unsatisfactory, expensive, useless doctor experiences. (I hope you are replacing the allergy doctor with someone else.) I feel for you; to me the worst part of being sick was not knowing what was wrong with me. That's a terrible place to be. Wishing you luck with your information gathering.


Rose
I have Lyme; it doesn't have me.


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 3797
   Posted 12/22/2009 6:07 PM (GMT -6)   
Hi Tala,
 
When I was sick I had migrating pain, I never knew where the pain was going to pop up next!  It traveled all over my body including my hips, most of my joints, and pretty much stayed in my legs for some reason which was the worse pain of all.   Back then I didn't have a clue about detoxing and I would bet that if I did know about the benefits of detoxing that would have helped reduce my pain if not eliminate it. 
 
Hope you feel better,
Denise
 
 
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/23/2009 9:47 AM (GMT -6)   
Thank you very much for your responses, ladies! This does help me a LOT. And you are right on, Willowrose, about the 'not knowing' being the worse part. I'm feeling a bit better about this diagnosis just hearing that others who know they have Lyme's have/had a similar pain pattern. My knees have been the worst for me too, Deejavu. Thank you again, everyone here is so nice and willing to help each other - truly appreciated!!!

rarual
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/10/2010 5:51 PM (GMT -6)   
I have been dealing with similar migrating pain as what you described in your post in December. A couple of years ago I was diagnosed with RA, after several years of poor diagnosis for OA and other things ... I started on Celebrex, then went to Methotrexate and Enbril and now I am on bi-monthly infusions of Remicade for RA (for about a year), but this new migrating and severe pain really took me by surprise. about a week ago, I woke up with a severe pain in my neck, followed by a low back event that I figured was related to over use, or bending over wrong. (which has happened before in huge way!) Within 2 days, I was experiencing debilitating pain in my right shoulder, down my arm into my elbow, and over on my left wrist and into the hand. By the evening I was suffering severe pain in my right knee, below the joint ... by the next day it was the left arm, left shoulder, right wrist etc. Things seems to jump all over and move around every day for the last 7-8 days. A couple of months ago I suffered the same depth of severe pain in my innner/lower knee tissue and was sent directly to the ER to be sure that my accompanying high blood pressure wasn't related to a DVT. (Deep Vein Thrombosis) After several expensive tests, doppler studies etc, it was determined that the pain was not related to any blockage of my renal veins ... frustrating to not get any answers. Since then I have experienced the same kind of deep and severe pain in my inner knees, elbows, shoulders, neck, hands, wrists, ankles etc, all in a variety of different locations each and every day -- and changing throughout the same day.

My Rheumy recommended that I do a "rescue" coarse of prednizone, and manage the residual pain with Tylenol-3 (with codine). It helps to cut about 50% of the pain for several hours, but not completely and not 24/7. At night an increased dose of the tylenol-3 helps me get a few hours of sleep, but that's about it.

It is only now, after over a week of migrating and severe pain that I've jumped on line to read medical blogs and get some more input.

My back has been adjusted a few times, by a chiro, and she suggested that I may have some nutritional and potential food-allergy related issues, perhaps related to glutens and sugars. I'm going to try a food elimination program with blood tests to rule out that angle (or rule it in ...) Back when I was diagnosed with RA, I was also tested for Lupus, Limes, and a bunch of other things, all with no diagnostically significant results.

If you have received any helpful input from doctors, or relief methods, please post them. I'm at the relative beginning of this thing -- and would greatly appreciate any information I can get my hands on!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4119
   Posted 1/10/2010 6:21 PM (GMT -6)   
rarual,

Welcome to the board! Interesting that the prednisone helps your pain - it never did a thing for mine, and may have made it worse sometimes (probably from the water retention). But then, my Lyme seems more neurological than arthritic (except my hands). I was also dx with osteo-arthritis, but it is sub-clinical and the only way they found it was when they did a full-body bone scan when they were trying to rule out bone cancer. Gee, it has sure been a long diagnostic journey for me... Anyway, it is possible that the Lyme test that you had done was not all that accurate. It is possible to also have sero-negative Lyme because of the way that the Lyme bacteria are able to hide from the body's immune system. There is some good info in the thread at the top of the forum for people new to Lyme, so you might want to check it out.

Take care,
-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 trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 1/10/2010 7:03 PM (GMT -6)   
rarual,
Boy, does your diagnosis journey sound familiar to most of us here on the Lyme's board! The only thing that greatly relieves the pain for me (that doesn't cause intolerable side effects) is Tramadol. Tylenol, Tylenol 3, ibuprofen and prescription strength ibuprofen did absolutely nothing for the pain for me.

It might be in your best interest to see an allergist or even diabetes doctor (endocrinologist) and have the specific gluten tests done, if you suspect a gluten intolerance. Gluten intolerance causes many strange symptoms and when ingested has a detrimental cumulative effect (have a family member with Celiac's, which is a gluten intolerance, and it seemed to come on out of nowhere after being completely healthy). I went to an allergist for 2 years after my problems started and was told all of my symptoms could be caused by allergies. Now I realize it was a mere coincidence that my symptoms temporarily got better on allergy treatment, and when they came back full force, the doctor claimed it was from a different allergy than the one he was telling me all along (it was past the time of year I would have exposure to the original one he told me was causing my problems). With allergies you can have different ones come and go and have some sensitivities (not true allergies), but my symptoms remained constant - all of these related to the Lyme's and my actual allergy symptoms (they didn't get better either!). I do have some slight food allergies, but when I got a second opinion, I was told that NONE of my particular allergies would cause these symptoms (they would cause only the true typical allergy symptoms).

Good luck on your journey and whatever it turns out is causing your problems, know that you are not alone in the frustration, confusion, and anger over your situation.

mickisofine
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/4/2010 10:32 PM (GMT -6)   
Hello, I am new to this but wanted to see if anyone has had any syptoms that I have had with migrating joint pain. I think its is crazy that something doesnt show up in the blood work I have done. Ok my pain will migrate from my right shoulder to my right wrist to my left shoulder to my left wrist. I am so puzzled. The pain usually comes on at night and is a 8 on a pain scale of 1-10. I will have the pain in each are for about 1-2 days then it moves. I have also had the pain in my big toes and my jaw has locked up. The wrist and shoulders are the worst though. Does anyone have any idea what is going on with me. Frustrated smhair Mickisofine

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/4/2010 11:37 PM (GMT -6)   
I didn't read your entire post - but I will tell you: migrating pain is the story of my life. It's in my bones, my joints, my muscles, and everything else...and it's somewhere different every day. Sometimes it seems to effect my smaller joints (fingers, wrists, hands, toes, feet, ankles); other days it's the bigger joints (hips, knees, chest, etc.). Some days it's my skin that hurts so bad just to blow air across it. Other days it's a migraine...

Lyme can have SO many different symptoms...it's amazing...truly amazing.
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