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New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/6/2010 1:41 AM (GMT -7)   
Hi guys

I found this Forum in my quest to find some is my story.

I am 40 years old, a Mum of 3 older children and married. I have 3 dogs...2 purebred Staffordshire Bull Terriers and 1 Staffy X.

As long as I can remember...I have been in pain...neck, head, back, jaw, shoulders etc. I remember have some sort of treatment on my back at the age of 12...some short-wave sorta treatment.

In 2004 I injured my back at work and ended up having spinal surgery in 2006. Pain increased and increased and I was diagnosed with Arachnoiditis (an incurable condition of the spinal nerves)

As it stands right pain consists of:

Severe headaches
Severe jaw and facial pain
Severe shoulder and arm pain
A "tennis elbow" that has been there for 3 years
Severe neck pain
Upper back pain - feels like muscle/tendon pain
Lower back pain
Severe hip and buttocks pain
Pain in my knees and feet

I am exhausted!!! I NEVER have a good night sleep...NEVER!

I have been constipated for over 4 years, but have developed diarrhoea in the last 4 weeks with severe bloating, cramps...pain...etc.

I am desparate for answers! I am worried about going to my Doctor and him looking at me like I am a hypercondriac. He has been there through my spinal issues and I think whenever I complain about something...he just put it down to my spinal issues :(

My arms and legs fall asleep at night and I sometimes wake up and I can't feel some of my fingers or one of my legs.

I suffer from terrible reflux/heartburn...sigh

I can't STAND loud sudden sounds. If I am lying down...trying to sleep and I hear a loud noise....I see a flash of light before my eyes and my body starts every nerve in my body is being stimulated and I can't make it stop.

In my heart...I know something is not right! Do I have Fibromyalgia....I don't know :( I have been searching all day to try and find a Doctor near Newcastle Australia...who specialises in Fibromyalgia.

I would love to hear from people who might have the same issues as me, because I am hanging by a thread here...absolutely exhausted!

Thanx :)

Post Edited (Cleasanta) : 6/6/2010 2:40:14 PM (GMT-6)

Veteran Member

Date Joined Sep 2009
Total Posts : 663
   Posted 6/6/2010 5:44 AM (GMT -7)   
Hi Cleasanta and welcome to the family! By the way those dogs are beautiful! I was just recently diagnosed with fibro (within the last 6 months) but so many of your symptoms I also have. My main complaint for years was headaches. I had every test done and they couldn't find anything and just chalked it up to chronic daily headaches along with migraines. I had basically realized I would always have head pain. Last year in July I got a migraine that would not go away. I had it for a month and a half. Well through all that my doc finally started working on getting my headaches under control and that's kind of when I realized how bad everything else hurt. The head pain when it is bad completely consumes me! It's all I can think about, even though I try not to. The other pain was always there it just had become secondary to the head pain. I hope you can find a good doctor and find out what is going on so that you may get the treatment that you need. Take care and keep coming back here, it is a wonderful place.
Gentle Hugs,
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 41931
   Posted 6/6/2010 6:11 AM (GMT -7)   
Hi Cleasanta,

Welcome to the HealingWell Fibromyalgia forum. I am so happy that you have joined us. I too have dogs. I have a german shepherd puppy and an Australian cattledog mix who is 14 years old. But still hanging in there. I read that Aussies can live up to 20 years old. That would be fantastic, as she is a good dog. The pup is coming along. She is growing so fast.

I am sorry for all the pain that you are in. Moving around is the wisest thing. I know that it is hard, but the less you move around the worse that you get.

My fibro seems to be centered around my neck and shoulders. I think that when I get pain, I get tense, which tightens up those muscles. Though I have had problems in other areas.

If you get the chance, check out the thread titled fibro101. It is the second thread on the forum. There is a wealth of information there and many of our experiences that we share. I hope that you read it. I think that you will be glad that you did. There are lists of symptoms, ways to explain your illness to others, and much more information.

Keep posting and know that all of us are here for you. The weekends are slow here, but during the week, there are many posters.

I hope that you are having a good day/night.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Regular Member

Date Joined May 2010
Total Posts : 52
   Posted 6/6/2010 6:11 AM (GMT -7)   
Hello Clesanta,
Welcome to the forum. I am new here myself. I was recently diagnosed and I had many of the same issues. I was very tired all of the time and I hurt all over. This started a few years ago, but it became a lot worse starting about nine months ago. At first, I thought it was just because I was getting older, but then I realized that a 45 year old doesn't normally hurt this much. I thought I was a hypochondriac because "could I really be in this much pain"? When I started becoming forgetful, I knew something was wrong. I had no idea of all of my problems, but I am glad I found out. You will probably feel better once you see a doctor. For me, once my doctor put his finger on what was going on, even though the pain didn't suddenly go away, it was nice knowing that I wasn't imagining things. :-)
Best of luck to you and I hope you find out what is going on!
Dx with Fibromyalgia, depression, sciatica-Feb 2010, carpal tunnel, arthritis in lower back-May 2010; IBS-2007; RLS-2006; Tachycardia-1999. Probable RA-going back to rheumatologist in July. Falling apart!

Veteran Member

Date Joined May 2010
Total Posts : 1556
   Posted 6/6/2010 8:45 AM (GMT -7)   
Hi Cleasanta, Im not a dr. so I cant say for sure that it is fibro but you sure have alot of the same symptoms I do. Im sorry that the pain and everything brought you here but I am glad to welcome you to the boards. Hope you find out something soon.


Forum Moderator

Date Joined Apr 2005
Total Posts : 17528
   Posted 6/6/2010 10:54 AM (GMT -7)   
Hi, Cleasanta, and welcome!  I'm so glad you found us and joined in.  Yes, you could possibly have fibro from what you are describing.  I'm not a doctor but I know what pain is.  Also, with the back problems you have, some of these things could easily be caused by your back.  I've had back problems for years, too, but not nearly as bad as what you have said.  I'm so sorry you are having all of this pain but we are here to try to help.
Be sure to check out the Fibro 101 thread.  There is a list of symptoms on there and you can check that and see what you think.  This would be a good tool to take to the doctor and have circled all the things that you have on the list.  Also, keep a log.  There is a link in Fibro 101 that has a log that you can print out and then there are other links that show you how to describe your pain.  One of those pain links has pictures of faces to help describe the intensity of the pain you feel.  Anyway, keep the log, write down what you do and then describe the pain you feel.  This will help your doctor understand better what you are going through.
We do have the pain, especially shoulder and neck pain.  We have the sensitivity to sound and light.  Yes, some have described that their nerves feel like they are vibrating.  That doesn't happen to everyone.  Actually, we all don't have the exact same symptome!  Each one of us is different.
Doctors don't know what causes this illness.  Also, what works for one patient might not work for another.  That makes it hard on the doctor AND the patient.  Most of us try things and see if they help at all.
Now, what to do.  Here's what I have done.  I take ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 supplements for my pain and fatigue.  You will find info on the supplements and how they work in your body on the Fibro 101 thread.  These have worked for me and they have helped other people on this forum, too.  I'm not pain-free but I am in control of the pain.  Actually, I don't think you can be pain-free with this illness.  But, you do become accustomed to it and learn how to ignore some of it and work around it.
Hot showers and baths really feel wonderful.  Many have a Bed Buddy.  We find these mainly in drug stores here in the States.  You can make your own by taking a tube sock, filling it 2/3's full of raw long grain rice, and tying a knot at the end.  Then pop it in the microwave and it gives off moist heat due to the moisture in the rice!  Oooohhhh, it feels sooo good!
Exercise is very important with fibro but it has to be gentle exercise.  There are some gentle stretching exercises on Fibro 101.  My regular gentle exercise that I do daily is walk.  I also swim.  Both of these are easy on the muscles, help keep you more limber, and also help with the pain.  Water exercise would be wonderful for you if you have access to a pool.  You said your hips, knees, and feet hurt but in the water you are pretty much weightless.  Anyway, it is important to keep moving with fibro.  If you sit or lay too much, you will be stiff as a board. 
It's also important to pace yourself.  You can do most of what you did before fibro but not in the same time frame.  I will work a little, rest a few minutes, and work a little more.  If you get extremely tired then stop.  The work will be there when you are ready again.
I hope I've answered some of your questions.  Be sure to let us know what your doctor says next time you go.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 6/6/2010 12:22 PM (GMT -7)   
Welcome to our forum Cleasanta, I am sorry you are in so much pain. Finding a good
doctor is so important. Is there a teaching hospital in your area that could refer you to
a rhuematologist? Getting a diagnosis can take time even when you have a good doctor.

I also have back problems and have had surgery, My first doctor wrote every pain off
to something to do with my back and I was female who was perimenopausal. Two doctors
later I found a rhuematologist who did extensive blood work and testing and sent me to a
neurologist, dermatologist and cardiologist. I have a few dxs and fibromyalgia is one of them.

Don't give up, the waiting is worth a correct diagnosis and proper treatment. I wish you
the best and really hope you can find a wonderful doctor soon. Your dogs are beautiful:)
Keep us posted!

hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

New Member

Date Joined Jun 2010
Total Posts : 2
   Posted 6/6/2010 2:58 PM (GMT -7)   
Hi guys

Thanx for all your replies...much appreciated :)

I have had minor symptoms for a while, but the full-on symptoms in my neck, shoulders, upper spine, jaw and head seems to have been triggered by my spinal surgery. This surgery was a very traumatic experience and I have not been the same since. This might sound strange, but I am sure something inside me was triggered.

I am allergic to Ibuprofen, but take 8 Panadeine Forte a day (each pill had 30mg codeine and 500mg paracetemol). I have been offered intrathecal (directly into the spinal column) Morphine pump...spinal cord stimulators...have tried Lyrica, Neurontin but they made me feel very ill. This was offered by Pain management Doctor due to my Adhesive Arachnoiditis. Adhesive Arachnoiditis is given to you by the Medical doesn't just pop up. It happens when foreign bodies like blood, dye, cortisone enters the spinal column where your nerves are located.

I know the symptoms of my Arachnoiditis and a lot doesn't make any sense. A lot of people who have been diagnosed with Arachnoiditis will later get the diagnosis of FM and RA. The complete numbness of my fingers does not make any sense. I have had CT scans and everything looks nerve compression.

The feeling of my body "vibrating" is very uncomfortable. It happens EVERY day and is increased by loud sudden sounds or a flash of light. I sleep with a noisy desk fan on at night to try and overpower any sudden sounds. It gets that husband can feel it and see it :(

How can I explain feels like I have been run over by a truck in the mornings...the stiffness, pain and tiredness is very debilitating :(

I will try and get an appointment with my Doctor for a referal to a Rheumatologist. If we don't have one here in Newcastle...I will ask to go to Sydney.

Cheers guys :)
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