Chronic low-grade fevers

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spaztick
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Date Joined Oct 2006
Total Posts : 851
   Posted 8/8/2007 11:04 AM (GMT -7)   
Hi everyone,

I'm from the fibromyalgia forum. I was dx'd w/ fibromyalgia in 2000, and now recently possible CFS.
My overall disability/functionality has decreased dramatically since last year, due to profound fatigue and chronic low-grade fevers (up to 100.9 F). The low-grade fevers have been on-going for several years, but worsened in that the fevers went from intermittent to chronic.

My illness seems to run a regular pattern of approximately 3-4 "sick days" in which I'm mostly bedridden to 3-4 "better days" in which I am able to do some essential chores or possibly get out of my apartment. In my doctor's words, I'm mostly "housebound." I believe that if I didn't have these dreaded fevers, my overall functionality would increase.

My question is:
Does anyone out there dx'd w/ CFS experience chronic low-grade fevers (ie- up to 101 F chronically)?
 ~ Carrie J
 
Fibromalgia (dx'd 2000 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/12/2007 7:31 AM (GMT -7)   
Carrie, I experience chronic low grade fevers, but at this time it's hard to tell if it's lupus related or cfs related. I do agree that the fevers can wipe you out and make you feel much worse than when your temp is normal. I know when I have a fever, I feel worse than usual. I hope your doc can help you sort this out. Does tylenol or ibuprofen bring your fever down at all? I have fond that when I have my fevers that fever reducers don't get rid of my fever, but it can be brought down a bit.
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/13/2007 5:40 PM (GMT -7)   

Hi hippimom,

Thank you so much for your response!  Unfortunately, neither Tylenol nor ibuprofen bring down the fevers.  My GP and the infectious disease specialist said that Tylenol does not bring down the fevers because they are not infection-related.  My GP believes I have an auto-immune disease.  The infectious disease specialist said it's either an auto-immune disease or cancer, but there's no point in going on a wild goose chase for cancers at this time.

Basically, the fevers have to SPIKE before the doctors are concerned.  In my case, the fevers never go over 101 F.

I'm sorry you have lupus.  I was tested for lupus a few years ago, but that was ruled out because my ANA was normal.

I'm investigating the possibility of lyme disease also (the people on the lyme disease forum have been very helpful).

Since you're the only one who has posted a reply to this question, I guess not many CFS people have chronic low-grade fevers (?).

Is it widely accepted now that CFS is an auto-immune disease?  Do your fevers ever reach over 101 F?

 


 ~ Carrie J
 
Fibromalgia (dx'd 2000 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/14/2007 7:32 AM (GMT -7)   
Carrie, I'm pretty sure that low grade fevers do happen to many people with cfs. There just isn't a lot of activitiy on this forum, so not a lot of replies are posted. I always say it's because people with cfs are too tired to post, lol.

I'm not sure if cfs is officially in the autoimmune category, but I think there is a general consensus that it is autoimmune related. Another name for cfs is Chronic Fatigue Immune Dysfunction Syndrome.

My fevers also rarely go over 101 - they are usually between 99 and 100.5. My understanding is that some of my fevers might be related to inflammation in my body and that's why fever reducers don't usually bring it back to normal.

It might not hurt for you to get a lupus panel done. It's a little frustrating that docs stop looking if the ANA is negative. There are people who have lupus who have a negative ANA and some of those people have other bloodwork for lupus turn out positive. It took me almost 3 years and 3 doctors to get a diagnosis. My ANA was not considered high enough at first, but over time I developed more and more symptoms and finally got diagnosed.

I'm glad you are looking into possible Lyme. The people on the Lyme forum will be able to tell you rhe most reliable lab to use because I guess there are a lot of false negative results.

I really hope that docs can eventually help you sort this out - hearing about cancer has to be scary. Please let me know if you have any other questions. This forum is very slow, but I try to check in daily. Also if you have questions about lupus, please feel free to pop into the lupus forum and ask any questions you have.

Take care
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/20/2007 11:44 AM (GMT -7)   
Hi hippimom,

Thanks for your reply.

I completely understand that the CFS forum might be slow because of the extreme fatigue. I have a very hard time keeping up with reading the posts, and also even trying to recall my own posts...LOL!

Your fevers are in about the same range as mine; my baseline temperature used to be 98.6. My temperature is very seldom under 99.4, but never is over 100.9. I am definitely going to take your advice and get my doctor to do a lupus panel.

Thank you for your suggestive about reading/posting on the lupus forum as well. I have tried to get more lupus information by googling lupus, but the articles are so vague and numerous. As knowledge is power, I have to read up on both lyme and lupus in order to try to figure out what is going on with my declining health. It is very frustrating when the doctors drop the ball, isn't it? It's almost like if the disease process is too difficult to diagnose, they don't want to bother. But naturally I want to get to the bottom of this.

I made an appointment in September with the lyme disease doctor that I saw in March 2006. I want to get the proper testing done in California, whereas my tests were only done in B.C. And, I will suggest to my doctor to do the lupus panel testing. Do you know which particular tests are included aside from just the ANA? Perhaps I should also go back to the Rheumy who dx'd my FMS in 2002.

Thanks again for your suggestions. I really appreciate your input.

I also have to attend a Review Tribunal on Sept 18/07 for pension plan disability benefits (similar to U.S.A. SS-DI). I have to present my case in front of a lawyer, doctor, and member of the community. It should be a really great time! LOL.
 ~ Carrie J
 
Fibromalgia (dx'd 2000 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 


sandybeaches
Regular Member


Date Joined Aug 2007
Total Posts : 22
   Posted 8/21/2007 7:25 AM (GMT -7)   
Hi Carrie,
I too, have fevers when I'm about to experience a Chronic Ebstein Virus flare. Before the virus becomes Chronic, I started with mini-flares that you described.
I would ask the dr. to check for this in your blood test. It's easy to do and once you have it, you always have it.

Sandy B

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/22/2007 3:02 AM (GMT -7)   
Hi Sandy B,

Wow, you have chronic EBV? Back in 1987, I was dx'd w/ "Epstein-Barr or a similar virus." I was told by the doctor the blood test revealed that the infection had "been in my system a long time." I had UTI's, and infections like an ear infection, then a sinus infection, then an eye infection, then a throat infection, etc. I was sick on and off for about three years, but I was never absent from work for an extended period of time. But I was only 25 yrs old back then! I was healthy, with the exception of my bladder function problems and UTI's, until I started to experience symptoms of FMS: Back pain, insomnia, and worsening IBS (chronic diarrheaa).

I continued to work, but I stopped working in Feb/01. During 2000, I suffered from FOUR severe flu's (and Upper Respiratory Tract infections), and was on/off work. This was unusual for me, as I normally only get a flu only once every few years. The fevers continued into 2001, but were only intermittent low-grade. In late 2005, the fevers became chronic high-end low-grade.

I was officially dx'd with FMS in 2002 (informally in 2001 by my GP). I do not carry the official diagnosis of CFS, although I have ssen the term used in a few of my medical reports. My GP has said possible CFS, or possibly lupus, but I do not have an official diagnosis yet. I do know that FMS does not cause chronic high-end low-grade fevers. And I do know that FMS is not a progressive illness.

Oops, I foroot to mention the most important thing. I was recently (2006) tested for EBV and it was negative.

I read an excellent, long article on wikipedia about CFS/ME. I was saddened to read that some people actually get worse, and sometimes never get any improvement. I hope that one day there is a cure for FMS and CFS.

How are you managing with your flares? I hope it doesn't get you down (ie - bedridden) too often. Take good care of yourself.
 ~ Carrie J
 
Fibromalgia (dx'd 2000 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 


Sally 2
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 8/23/2007 6:22 PM (GMT -7)   

I am brand new to the forum.  Carrie..I have almost identical symptoms and run low grade fevers like you do.  I am curious...how many other illnesses have you ruled OUT..like MS, Lyme, lupus...

 

Thanks,

Sally


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/24/2007 7:32 PM (GMT -7)   

Hi Sally,

The infectious disease specialist I saw in Oct/06 did blood work (CRP and ESR) that was negative, so apparently that ruled out lupus.  However, he still hasn't sent his report to my GP (PCP).  My GP recently stated that the auto-immune disease I have could be lupus, so I am going to ask him to test my ANA (was negative in 2001).  The neurologist I saw in 2003 regarding my right hand tremor said he didn't think I had MS (my MRI revealed nonspecific high flair areas and four T2 areas - white matter), but I forgot to mention my long-standing bladder dysfunction.  The urologist said that they always suspect MS when a person (like me) has bladder spasms. 

I'm going to see the lyme disease doctor on Sept 12/07.  I saw him last year, and he gave me the dx of "clinical lyme disease" and started me on two abx for three weeks, but on the last appointment he changed his mind and wrote "no indiction of lyme disease"; I believe because I collapsed while walking through his office door.  He told me that I should see an GI specialist and an infectious disease specialist.  I did see these specialists as per his advice.  I am going to advise him of this when I see him again, and I'm going to bring the report from the Emergency Department so he has a clearer picture of what was happening the last time I saw him, and I am going to ask him to send the new blood work to California, which I found out about from the H/W lyme forum. 

The infectious disease specialist said that "the fevers are just part of you" and "at this point there's nothing jumping out so there's no point in going on a wild goose chase for cancers."  He said that chronic fevers are caused by either infection, an auto-immune disease or cancer.  I'm not worried about cancer; however I strongly believe that it is an auto-immune disease, in addition to FMS.

Wow, my story is long and complicated.  How are you doing?  In addition to CFS, do you also have an auto-immune disease like MS, lupus, or a diagnosis of lyme disease?  Some of these conditions can take a number of years to diagnose.  Let me know how you're doing when you get a "window of energy" (I know how disabling chronic fatigue can be).


 ~ Carrie J
 
Fibromalgia (dx'd 2000 by GP; 2002 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 


twinofdar
Veteran Member


Date Joined Mar 2006
Total Posts : 1837
   Posted 8/24/2007 7:35 PM (GMT -7)   
Carrie: do you think it could be your EBV acting up again. Some Fibro/CFS Dr's think that "stealth" infections hide in our body (ie we get the "flu" or "mono" and the germ doesn't leave the body because we are immune compromised) and come out and wreak havoc on our bodies (essentially causing Fibro and/or Chronic Fatigue.

I wonder if you should get tested and treated with anti-virals? Only certain types of Dr's treat like this - the ones that really "treat" these syndromes. It's hard to find a gooo dr. that can think out of the box.

I have Lyme Disease and Chronic Fatigue - I was also found to have EBV, chlamydia pnemonia and several other "stealth" viruses and bacterial infections. I was treated with anti-viral IV's and I'm now on long term ABX. Another persotn that I know is taking Valcyte (I think?) for her viral infections.

Sally: I wonder if the same would appy to you? Of course you should continue to test and hopefully rule out the other illnesses as well

Not a Dr. but have done lots of research so these are just ideas.

I hope you both feel better soon.

Molly
Too much of anything is no good - moderation is the key.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/25/2007 8:14 AM (GMT -7)   
Carrie, I get frustrated when I hear comments like what your doc told you about the fevers - I think saying that the fevers are just a part of you is really a cop-out and the easy way out for the doc. I agree with you that you most likely have something going on in addition to FMS. It's weird that the Lyme doc changed your diagnosis. Molly had some really good thoughts as to some possibilities of what could be going on with you.

I just want to encourage you not to give up looking for answers. There will be a doc somewhere who will take the time and will have patience in trying to figure out what is going on. I think a lot of docs give up too easily if the answer isn't staring them right in the face.

Hang in there
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



Sally 2
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 8/25/2007 8:29 AM (GMT -7)   
Hello all..
Thanks for the wonderful comments.  After 4 years of my family physician...I dumped him and moved on to the University doctors...they were better but I was in a teaching setting and wasted most of my appointments giving my history to the rotating internists that I saw..(all which were nice by the way...but I wanted the same person) So I went to a local internist that said...I am too young of a doctor...you should stick to the University setting...so I went back again...and yet another new face internist...so I said NO MORE.
 
So I met with an internist that my new "more local" Rheumatologist recommended ...he gathered all my records and met with me yesterday with his decision to do more tests.
 
I took my husband with me..I was nervous...I thought...will he reject me to?  will he call me a hypochondriac? 
 
Well....he did neither ...Thank God!  But he did blow me away with the tests he wanted and the specialists he wants me to see. 
 
This is what he ordered:
Blood work...he said starting from scratch...other than the anti SSA and B that I had in June which was negative.
Here is the blood work list:
ANA
CBCwith diff
EBVG
EBVM
FERR
SPE
RF
ESR
FT4
TSH
UA
Liver Panel
Hepatitis Panel
______(these were the ones he had to hand write..must be more rare)
Anti double stranded antibody
Anti SCL 70
Anti smooth muscle, antibody
Anti Mitochondrial Antibody
 
TESTS HE ORDERED WERE:
TEE..something with cardiac to look for infection
MRI of Brain to rule out MS
CT of chest and abdomen
Pelvic Ultrasound
 
The specialists he ordered were at  a MAJOR clinic which is a three hour drive:
Internists
Infectious Agent
Rheumatologist..probably to confirm my diagnosis of sacroilitis
Neurologist
 
He said the three things that cause fever...but he doesn't think it is cancer because I have had it so long...and said to me...if I thought it might be cancer I would tell you...which is always nice to hear!  He was very upfront...didn't treat me like an idiot or child..but did give me the lecture...get used to feeling sick...because whatever you have has a good probablility of being chronic.
 
So I cried on the way home...but I guess I am glad someone is taking an interest in me and actually took the time to look at all the specialists and tests and symptoms over the last year that have been plaguing me.
 
To answer Carrie...I went to physical therapy to strengthen muscles..I have been up to this point diagnosed with spondylotarthropathy due to the sacroilitis.  I have been negligent of doing my exercises because I have been feeling tired and don't have the drive to do it ...but I do feel better when I exercise.  I invested in a hydrotherapy tub and will start that next week...I am hoping that makes a difference.  I used to work with the elderly...I feel like I have an old person's body..I have to pace myself...schedule "down time"...but I am not at the point I have to be on disability or anything so I feel fortunate. I know that I have permanent damage to my SI joints...but what is causing it?  Could it be Lyme?  or is it the mysterious "auto immune"  we don't know what causes it? Have you tried warm water as therapy? 
 
 I also take max dose of Celebrex...can't seem to lower my dose..see a big difference.  I have burning in suprapubic that coincides with flushed flash and temp...so I think that might be nerves in bladder?  I have also had symptoms with breasts burning and possible milk coming in...weird huh They also said it could be Oestitis Pubis..which is the ligament in the front where pelvic bones attach.  My bone scan was positive for that..but the Rheumatologist thinks that it is spondyloarthopathy when put it together with sacroilitis.
 
I have made contact with Lyme specialist..he is sending me info...I will make appointment then.. My neighbor had Lyme which got me to suspect this. He is not sure that he contracted in our immediate area.  But since I am a girl scout leader and go camping frequently...hmmm  My first Lyme test came back negative..but sounds like that doesn't mean anything...right?
 
My husband and I both liked the doctor and we are optomistic.  We love his bluntness...he said what he thinks.
 
For those of you who have been to an infectioius agent...do they pursue Lyme disease aggressively?   
 
I thank you all for your interest in my case...I welcome your comments.
Sally
 
Diagnosed with torn abdominal muscles in 2002...was this wrong?
Chronic pelvic and back pain...becoming worse in 2006...responded with NSAIDS
Diagnosed with oestitis pubis then seronegative spondyloarthopathy indicated by MRI sacroilitis
Persistent low grade fever...no diagnosis
Persistent burning and urinary frequency urgency...no diagnosis
Some neurological "incidents or events" with no conclusions hemifacial drooping that was transient 4 episodes..CAT scan negative in Feb.
Muscle twitching since March...no diagnosis
Currently being screened for MS..won't know for a while. Considering Neuro Lyme differential...
IBS after intestinal spasms...2007
Gerd since 1997
 
Meds:  Max dose Celebrex and Nexium...Davrocet prn and Bentyl prn
 
 
 
 

twinofdar
Veteran Member


Date Joined Mar 2006
Total Posts : 1837
   Posted 8/25/2007 10:09 AM (GMT -7)   
Hello!
 
So happy you are getting so many tests and seeing so many specialists.  It's important to take charge of our health.
 
Some Infectous Disease Dr's treat and recognize Lyme but they are rare (in fact thier "guidelines for treatment" have brought a criminal investigation on the authors by the AG in CT.)
 
A good test for Lyme is Igenex but none are perfect.  I know many people that have had many tests that were negative only to test positive at some point.  When the Pres. of our State Lyme Assoc. finally got a copy of all of her health records she had a total of EIGHT POSITIVE tests over a few years time yet none of her Dr's told her she was positive for Lyme.  She is healthy now after long term treatment.  She could have been healthy for many years prior.

I'm also getting upset because I feel that not enough has been done for MS, either.   There is so much research that hasn't been followed up on.  It's always about the money somehow.
 
I know you will figure out what is causing your illness - I can just feel it.  I hope it is something very easy to treat!
 
Hugs
 
Molly


Too much of anything is no good - moderation is the key.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/25/2007 1:00 PM (GMT -7)   
Sally, I'm so glad you finally got a really good throrough doctor who is working hard to figure out what might be causing your symptoms. While I hope you don't have anything serious, I do hope your labs will help the doc figure things out. There's nothing worse than feeling rotten and having all your labs come back normal.

Let us know how your labs turn out when you get the results back.
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



4sons
Regular Member


Date Joined Dec 2006
Total Posts : 406
   Posted 8/30/2007 12:56 PM (GMT -7)   
Sally 2 said...


He said the three things that cause fever...

Hi ... what are those three things? I have been battling a low grade fever for months now (never over 99.5) that comes in the mid-late afternoon. SO many things have been ruled out ... but chronic fatigue and fibro keep being brought up. I tested negative for R.A, lupus, and Lyme's.

Can you share the three things that cause fever?

Thanks!
Ruth/4sons
Cheers -

Ruth/4sons

age 52/Type 2 diabetic/"controlled" by diet and exercise


Sally 2
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 8/30/2007 3:09 PM (GMT -7)   
Ruth,
infection, inflammation and mestatic cancer. That was from my doctor but I had also read that on the net too. In my case I am hoping that it is from sacroilitis inflammation. He doesn't think it is cancer because I have had it so long and I am quite plump ha ha. Have you had MRI's of spine or other major musculoskeletal area to rule out inflammation?

I have seronegative arthritis which means they didn't detect inflammation in my blood...my sed rate and Creative are normal but I have permanent damage to my spine and bone edema, neither is crippling though..so they caught it early.

I couldn't walk after about 2 PM because of chronic pelvic and back pain. I was taking 4 Aleve a day before they finally did an xray, bone scan and MRI to find my inflammation. I had two trips to ER before the MRI test and both times they treated me like I was a crazy person. Be aware that inflammation is possible even with a normal sed rate. Normal family physicians, busy ER physicians will be thrown off by that...but the Rheumy at Univeristy Hospital is used to seeing it. I thank God they found the source of my pain...

Did you see the special on Good Morning america about Lyme disease? you can have a false negative. Mystery Diagnosis has featured two people with chronic Lyme...both were told they didn't have it. A Rheumy on that show explained how borellia somehow hide in our bodies after the early stage is passed. Early stage is rash and only 30-50% have a bullseye rash. They suggested you find a Lyme literate doctor who has special training..they are few and far between. Some lab...I think in Colorado...is supposed to have the most sophisticated testing facility. My neighbor thinks he had Lyme but since we aren't in an endemic area...they treated him with antiobiotics because of low grade fever. He got better after being sick for year. He is works as an animal control type person and is outdoors alot. I am a girl scout leader and could have gotten bitten who knows where...I may have had a rash and I am going to bring it up to infectious specialist in two weeks.


Both chronic fatigue and fibro are auto immune as you probably already know and since they don't know what causes those it makes it hard for docs to give treatment advise. Have you tried aqua therapy for comfort and pain control? I think it is like a good drug for me...relaxing and helps me stay in shape.

RE: MS
I have recently found out that in a little town of 4,500 people...I know 5 people with MS. One is a neighbor to my parents where I grew up..one is a high school classmate...one is father to my son's friend...one is a 2nd cousin and one is sister of my neighbor. I wonder if this is a cluster area? I researched that a bit and they considered Galion Ohio to be a cluster with I believe 9 cases. Is it anybody's job to keep track of incidence in area? What if autoimmune disese is contractible through vectors? Has anyone seen research on this topic? Can MS/CFS/Fibro be related to Lyme disease and mystery bacteria that hide in our bodies? I imagine someone has researched it at some point. Anybody out there heard about clusters? Researched this topic?

As always..please confirm any information through a doctor..I am not a doctor. As I am typing this...I am thinking..I wish I went to medical school. I hate learning everything in bits and pieces.

Sally

4sons
Regular Member


Date Joined Dec 2006
Total Posts : 406
   Posted 8/30/2007 4:15 PM (GMT -7)   
Well, I think cancer it out and my sed rate is LOW. I did test negative for Lyme's disease ... but no rash either. Just the stupid fever thing, my joints ACHES and I tingle. I see a rheumy in September. Thanks for responding, Sally. I really appreciate it!
Cheers -

Ruth/4sons

age 52/Type 2 diabetic/"controlled" by diet and exercise


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/4/2007 7:57 PM (GMT -7)   

Hey Sally, Sandy, Ruth, Molly & Everyone,

Sally,  I'm glad you're taking the bull by the horns and keeping yourself educated.  Regarding lyme disease, you should jump over to the lyme disease forum and check out their resources, and post some questions.  They are very helpful over there.  "Ticker" gave me web sites to read and other resources, and everyone is very knowledgeable on the lyme forum.  Ticker may be able to answer your question about cluster areas.  I'm seeing the lyme disease doctor on Sept 12/07.  I, too, have sacroiliitis, first dx'd after a significant motor vehicle accident.  I was also taking the maximum dose of Celebrex, but my doctor took me off Celebrex due to the "black box warning" and the fact that I have IBS and GERD.  It sure worked like a charm though, and I miss it.  Take good care, and let us know how your specialists appointments turn out.  Oh, you asked me about warm water therapy.  I don't do well in warm water (even the bath) because I get very weak.

Ruth, I'm sorry to hear that you have the "stupid fever thing" - I too have used that term.  Where do you get the tingling?  I often wake up with numbness and tons of tingles in both hands.  Good luck with your rheumy appt.

Molly, I don't think it's the EBV because I tested negative for EBV in 2006, and back almost 20 years ago, the doctor told me my blood work showed "Epstein Barr or similar" virus.  That's a very good suggestion about "stealth" infections and anti-virals.

Everyone, I'm sorry if I forgot to answer any questions -- and ask more -- today.  I saw the doctor today because I've had what seems like a bad cold -- off and on -- for the past 4 weeks, and the doctor said it's a viral infection, so it's knocked the wind out of my sails completely.  I haven't had the strength to even turn on my computer for several days.  Take good care everyone, and please let me know how you are all progressing.  We give each other more support than we get from doctors!!


 ~ Carrie J
 
Fibromalgia (dx'd 2000 by GP; 2002 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 
 


4sons
Regular Member


Date Joined Dec 2006
Total Posts : 406
   Posted 9/5/2007 3:48 PM (GMT -7)   
Carrie J said...


Ruth, I'm sorry to hear that you have the "stupid fever thing" - I too have used that term. Where do you get the tingling? I often wake up with numbness and tons of tingles in both hands. Good luck with your rheumy appt.



In May I noticed a "burning/tingling" in my right arm. By July it was in both hands and feet and I get "pings" in other places on my arms and legs as well. Sometimes my face and TONGUE even "ping." Have you ever had that? I usually wake up with tingling/numbness in my hands now.

UGH.

I'm trying to be positive. I'm so thankful I don't have the host of OTHER illnesses I've been tested for over the years and more specifically, recently. People learn to live with this, right?

I'm a single mom and take care of myself. I MUST work full time. I should be able to figure this out, right???

Do any of you use alternative therapies like massage or acupuncture?

Thanks a million!
Ruth
Cheers -

Ruth/4sons

age 52/Type 2 diabetic/"controlled" by diet and exercise


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/6/2007 5:34 PM (GMT -7)   

Hi Ruth,

I don't experience any burning sensations, but I do experience numbness and tingling in both hands which awakens me.  In my case, I think it may be due to the disc narrowing in my C-spine.  Have you mentioned your burning/tingling and "pings" to your doctor, and if so, does he/she know what the cause is???

Regarding alternative treatments, I do see a chiropractor.  I am going to see him soon and ask him about the numbness/tingling in both hands.  I'm lucky that my chiropractor is exceptional in his line of work, as not all chiropractors are. 

I also sometimes use my therapeutic massager to relieve muscle spasms.  In the past, I have tried Guafenesin therapy and MSM and tons of different vitamin/herbal supplements to improve my health.  The only supplements I now take regularly are Vit B, Vit C, and Calcium & Magnesium tablets.

Yes, people do learn to live with these dreaded conditions.  I think it's much easier to cope once you find out what you're coping with (ie- a correct diagnosis).  We do have to rely on doctors for a correct diagnosis, and some treatment options.

I'm happy to hear that you are still able to work, along with raising a family.  I had to stop working 6 1/2 years ago at 38 yrs old, but I still haven't lost hope for the future.

Take good care of yourself, Ruth!  PS - How did you do the "quote thing" in your postings???


 ~ Carrie J
 
Fibromalgia (dx'd 2000 by GP; 2002 by Rheumy)
Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis
Interstitial Cystitis (Rx Elmiron)
GERD (dx'd 2004 by Upper GI Series)
IBS
Depression
Essential Tremor (dx'd 2003 by neurologist)
 
 
 
 


4sons
Regular Member


Date Joined Dec 2006
Total Posts : 406
   Posted 9/7/2007 5:05 AM (GMT -7)   
Carrie J said...
Hi Ruth,

I don't experience any burning sensations, but I do experience numbness and tingling in both hands which awakens me. In my case, I think it may be due to the disc narrowing in my C-spine. Have you mentioned your burning/tingling and "pings" to your doctor, and if so, does he/she know what the cause is???

Regarding alternative treatments, I do see a chiropractor. I am going to see him soon and ask him about the numbness/tingling in both hands. I'm lucky that my chiropractor is exceptional in his line of work, as not all chiropractors are.

I also sometimes use my therapeutic massager to relieve muscle spasms. In the past, I have tried Guafenesin therapy and MSM and tons of different vitamin/herbal supplements to improve my health. The only supplements I now take regularly are Vit B, Vit C, and Calcium & Magnesium tablets.

Yes, people do learn to live with these dreaded conditions. I think it's much easier to cope once you find out what you're coping with (ie- a correct diagnosis). We do have to rely on doctors for a correct diagnosis, and some treatment options.

I'm happy to hear that you are still able to work, along with raising a family. I had to stop working 6 1/2 years ago at 38 yrs old, but I still haven't lost hope for the future.

Take good care of yourself, Ruth! PS - How did you do the "quote thing" in your postings???


Hi Carrie,

To do the "quote thing" look up at right hand top of whatever it is you want to quote. There are three boxes there ... one with an exclamation point, one with a thumbs down, and a yellow diamond. The first box is the quote icon. Just click on it.

The burning/numbness/"pings" were the first thing I went to the doctor with! I was told it was diabetic neuropathy (I'm Type 2). Finally I went to a neurologist who did an EMG and I DON'T have diffuse neuropathy. So it's not the diabetes. That's when I was tested for lupus and RA (both negative). My fevers continued and the tingling is MUCH worse. I got DEPRESSED. I am on medical leave right now for depression but my neurologist AND new G.P. (I fired the old one when she told me I was having a nervous breakdown!!!) both think this is an autoimmune thing. One thinks it's fibro but I don't have PAIN anywhere. The closest I come to pain is the discomfort of this weird tingling ... it's more than in my hands/feet. It's also in my arms and legs. Drives me to DISTRACTION. I certainly hope I can work ... I'm single and don't have any one but myself to rely on for support (financial or otherwise.)

Nice to meet you ... although under unfortunate circumstances!
Cheers -

Ruth/4sons

age 52/Type 2 diabetic/"controlled" by diet and exercise


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/7/2007 9:05 PM (GMT -7)   
Hello Carrie, I too have fibromyalgia and been on the fibro forum. I also had cronic low grade fevers for over a year or even years. Where do you live? I just learned that mine were cause by having Valley Fever. Pink Grandma

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/9/2007 7:36 PM (GMT -7)   

Hi Ruth,

It is very nice to meet you as well, and thank you so much for explaining the quote thing to me.

I am sorry that you have been off on medical leave from your work due to depression, but it is understandable under your circumstances.  I know from personal experience how frustrating it is to have an undiagnosed illness, first with my fibromyalgia and now with my undiagnosed auto-immune disease with unexplained fevers.

The fact that you do not have pain leads me to believe that you do not have fibromyalgia.  I'm wondering how long you have been experiencing the tingling problem and the unexplained fevers.  I would recommend that you jump over to the lupus forum on H/W and ask a few questions.  I have visited both the lyme disease forum and the lupus forum, and the folks have been very helpful.  I have also read the web sites that H/W has posted in both of these forums.

I'm glad that you changed doctors based on your previous GP saying that you were having a nervous breakdown.  That is such stupidity.  If you ever get another doctor mentioning depression, simply say, "Depression does not cause fevers."

I asked my doctor recently which auto-immune disease he thinks I may have, and he said, "I dunno, lupus maybe."  At the time, I didn't think much of it, but it slowly creaped back into my mind, so I am going to ask him to do lupus blood tests on me, and/or send me to the rheumy, who I haven't seen since my official diagnosis of fibromyalgia in 2002.

Also, I am wondering if you have been able to measure your temperature in order to see how high your fevers reach.  My baseline temerature is 98.6, which it almost never is anymore.  I'm doing really well if my temperature is 99.2, which doesn't happen often, and the highest reading I have got is 100.9 F.  While my GP was off in 2006, I saw a locum who dx'd me with "fever of unknown origin."  I looked it up on the interet, and realized that my readings have not been high enough for that diagnosis.  Later that year, I saw the infectious disease specialist, and I suppose he saw the paperwork that said FUO.  He told me, "You don't have fever of unknown origin." I replied, "I know, I never said that.  I have chronic high-end low-grade fevers."  And he said, "That's right."

The reason I have explained this is because it took a long time for the doctors to even investigate why I was getting fevers.  The infectious disease specialist measured my temperature on every visit, and also asked me to chart my temperature over a period of a couple of weeks.

Anyway, Ruth, I hope you are doing OK.  Keep me posted on how you are progressing.


 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/9/2007 7:40 PM (GMT -7)   

Hi Pink Grandma,

I don't believe I have ever heard of Valley Fever?  What is it?  I live in Western Canada.  May I ask you how high your fevers have reached?  Please read today's post from me to Ruth (4sons) for more info about me.  Nice to meet you, Pink Grandma. :-)


 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/10/2007 7:44 PM (GMT -7)   
Hello Carrie, The reason that I asked about where you live is that Valley Fever exists mostly in New Mexico, Arizona and the San Joaquin Valley in California. I and nobody that I have spoken to had every heard of it either. From what I read about it by googling it ..it's caused by soil getting disturbed like from farming, wind, new construction etc.. It's some kind of spore in the soil that you can breath in and when they get into your lungs they multiply and cause low grade fevers and fatigue along with some other stuff. My body temp is normally anywhere from 96.7 to 97.8. If it goes up to 98.6 (normal) I feel like do do. If it goes over 100 degrees I start hallucinating. My temp had been running 98 to 99.5 for a very long time. I was living on ibuprofen to keep it down. If you have a good immune system then you can kick it while it's still in your lungs. If your immune system in weak it could travel to other organs like your heart,liver or kidneys and it can kill you. Apparently my immune system kicked it while it was still in my lungs (thank God). It leaves calcium deposits on your lungs is how they can tell that you had it, when they take a regular chest xray. But it takes a long time to get rid of it. But since you're in Canada that is one thing you can rule out. Keep on the docs until you get a proper diagnosis. Have a good evening :-) Pink Grandma
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