Expert: Suzan Jackson - 7/23/2008

Question
QUESTION: I don't know if I have asked my question in the right place, but would like any advice, or even who to write this to, if you cannot help me.  I have a lot of pain in my shoulder muscles and leg muscles.  I know that I have osteoarthritis and AC joint arthritis in my shoulders and also have 2 slipped discs, caused by degenerative disc disease.  I am puzzled as to why I have these muscle aches, am very tired constantly, feel like I am in labour from above the waist to my knees, like a pushing feeling in my thighs from my back.  Also have a skin rash and sometimes my skin feels very sensitive, like a burning feeling.  I am very fed up with this and would like any advice.  My doctors and consultants don't seem to listen.  I have already had 2 epidural steroids which work for about 6 months on my sciatica, but the muscle pains (arms, shoulders, thighs) don't want to go away.  I have had this for about 5 years, being diagnosed at Easter 2003.  Thank you a million times for any answer

ANSWER: Dear Joanna -

I'm sorry to hear you're suffering so much and have been unable to find effective treatments yet.

My own illness (and therefore, the area of my expertise) is Chronic Fatigue Syndrome (CFS).  It doesn't sound as if you have CFS, since you didn't mention sore throat or swollen glands, cognitive problems, or flu-like symptoms.  I will try to answer your questions as best I can, though, and hopefully find some resources that might help you.

In case you do have some additional symptoms you didn't mention and suspect CFS, you can take this online quiz to help determine if you meet the criteria for CFS (it's also known as CFIDS):

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

Since you've already been diagnosed with two forms of arthritis, your best source of information will probably be the Arthritis Foundation:

http://www.arthritis.org/

Here's their page defining various forms of arthritis and suggesting treatments:

http://www.arthritis.org/conditions-treatments.php

I know of 3 supplements that have helped several of my family members with arthritis:  MSM, Glucosamine, and Chondroitin Sulfate.  You can read about each of them here:

http://www.arthritis.org/natural-supplements.php

Although I'm not an expert, I would guess that your labor/pushing feeling comes from the two slipped discs.  Has your doctor discussed with you the possibility of surgery to fix these?  If not, you probably need to find a new orthopedic specialist who will review all of the treatment options with you, including surgery.  Maybe you can find some doctor recommendations at the Arthritis Foundation's website or on its Message Boards:

http://ww2.arthritis.org/communitiesnew/Forum/msgboard.aspx

Again, I'm no expert, but I know my mother needed surgery years ago when she had slipped discs (and she's doing great now).

Despite your arthritis and slipped disc diagnoses, a couple of other possible diagnoses come to mind (maybe in addition to those you already have).  If you have not yet been evaluated for Fibromyalgia and Lyme Disease, you should find a doctor who will check for you (a rheumatologist for Fibromyalgia and an Infectious Disease Specialist for Lyme).  Both of these illnesses can cause significant joint pain.

Fibromyalgia is diagnosed based on symptoms and by a doctor testing various pressure points on your body for pain.  Here are several information resources:

http://www.fmaware.org/site/PageServer
(National Fibromyalgia Association)

http://www.mayoclinic.com/health/fibromyalgia/DS00079/UPDATEAPP=0
(Mayo Clinic)

http://www.cdc.gov/arthritis/arthritis/fibromyalgia.htm
(U.S. Centers for Disease Control & Prevention)

If your doctor says Fibromyalgia isn't a real illness or doesn't take your request for an evaluation seriously, he or she is ridiculously out of date - find a new doctor (preferably a rheumatologist).

Lyme Disease is a very serious and debilitating illness transmitted by tick bites.  It's become so widespread all over the world that it is nearly an epidemic in some regions (including where I live) and it is very often missed or misdiagnosed by doctors.  You may not even realize you were bitten by a tick - many people don't.  A rash is sometimes present at the beginning, but many cases don't have the rash.  Its main symptoms are joint pain or inflammation, fatigue, cognitive & memory problems,and in its later stages, neurological symptoms.  Ticks can also transmit several other types of infection as well.  There are blood tests to check for Lyme and other tick-borne infections, but they are notoriously inaccurate.  Many of the tests check for antibodies that your body makes in response to the infection, and, for various reasons, these antibodies are not always present.  

At a minimum, you should request Western Blot and ELISA tests for Lyme.  If either of these is positive, then you definitely have Lyme and need antibiotics for at least a month (possibly more).  If the tests are negative, it doesn't definitely mean you don't have Lyme.  If your symptoms seem to match Lyme, then you can also go further and request a Lyme PCR test which looks for the actual Lyme bacteria.  This is still not completely accurate, as the bacteria sometimes "hide" in cells and can't be detected in your blood, but it's the next step.  Here are some resources for more information on Lyme:

http://www.lyme.org/otherdis/ld.html
(Lyme Disease Foundation)

http://www.cdc.gov/ncidod/dvbid/lyme/
(CDC - tends to be a bit conservative on Lyme diagnosis and treatment, though)

With Lyme, it is critically important to be diagnosed as fast as possible.  It is easily treated with 4 weeks of antibiotics in its early stages but becomes much more difficult to eradicate when left untreated.

One other possibility comes to mind.  You mentioned a skin rash, and I recall that is often a symptom of Lupus (as well as fatigue and pain).  Here are some resources for more information:

http://www.lupus.org/newsite/index.html

http://www.cdc.gov/arthritis/arthritis/lupus.htm

I hope that you can find some answers among some of these resources or at least narrow down the possibilities. Also, it is critically important to find a doctor (or doctors) who will take you seriously and fully investigate all diagnostic possibilities as well as all treatment options.  I know how difficult it is to find a good doctor, especially when you are so ill (it took me a year of going from doctor to doctor to find one who finally diagnosed me correctly).  It is worth the effort, though.

Good luck -

Sue Jackson





---------- FOLLOW-UP ----------

QUESTION: Thank you very much for so much information and for all your time and trouble.  I would like to add that I do not have any flu-like symptoms at all.  You also ask why the doctors don't operate.  I was told by 4 or more, that they would not operate, as it will be unsuccessful, as it will only happen again again because it is from osteoarthritis and not from an injury.  I have been interested in your links of Fibromyaglia, as I do appear to have lots of the same symptoms, although the pressure points are not all there, eg, my elbows hurt sometimes, but not where the diagram says it should hurt.  It is only occasionally that my neck hurts, not all the time.

Answer
I'm glad to hear my suggestions and resources were helpful to you.  Hopefully, you'll get some good treatment suggestions from the Arthritis Foundation, since several doctors have said that's what you have.  Try those supplements I mentioned - a couple of my family members have and said they felt better within a week!  (even though the supplements say it may take up to 6 weeks to start feeling any improvement).  You can find lots of combination products in any drugstore that combine all 3 supplements.  Try to get as close to the recommended doses as possible (see the Arthritis website link I included before).

As for Fibromyalgia, you might have that as well.  A good rheumatologist should be able to formally do the pressure point exam for you.

Best of luck - I hope you get some relief soon!

Sue