Is it really Fibromyalgia?

[megsRN]

Hello everyone! I am new to Medhelp and look forward to meeting people with Fibromyalgia and learning what other people are doing to feel better. I was wondering if it is common to be diagnosed with Fibromyalgia when I lack "trigger/tender points" that I often read about? I have chronic pain in my left shoulder, left arm, neck, and upper back. Recently I have started experiencing some of these issues on the right side but the main region of pain is left sided. I am always tired and often I do not even want to get outta bed no matter how many hours I slept. I often have a weakened hot and cold feeling through my painful areas and I can never stay in one position for very long. I have a constant crunching/grinding feeling/sound over the left shoulder and back. I am currently on a 100mcg Duragesic patch and Savella for pain control. I use to take Cymbalta until I found that it caused increased migraines. Cymbalta helped tremendously. I was weened down to a 50mcg Duragesic patch which always lasted the full 3 days and I found myself with much more energy as well. Since I have been off this I have noticed my pain has significantly increased and my patches (which were increased to 100mcg) never seem to last the entire 3 days there suppose to. I am more tired as well. I was started on 50mg Savella twice daily and for the past 6 weeks there has been no improvement.

Ok so my question is Can you have Fibromyalgia without the classic "trigger/tender points" and because the Cymbalta had worked so well doesnt that confirm Fibromyalgia?

Thanks, Megan

[kevieb]

i read somewhere once that anyone with a chronic pain condition or with arthritis should be tested for lyme disease.  i asked my orthoped about being tested once because i waws bit by a tick years ago.  he was willing to test---but he wanted me to go through the hospital first, if that came back positive then we could test through igenex---which is where i wanted to be tested.  i didn't want to go throught the hospital first.  i'm sure it would have been an elisa test----which i understand isn't very reliable.  my understanding is that testing for the antibodies isn't the best way.  we have a naturpath/chiropracter who is also a microbiologist in a town not too far away who tests your blood and looks for the bacteria itself.  i'm planning on going there to get tested.    i know he treats people from all over the US.  we had a local gal that nearly died from lyme and he was able to do wonders for her.

i've never been much for naturopathic stuff---but the regular docs don't seem to be helping me much--and my muscle and joint pain has recently been increasing rapidly.  i tell my husband i am going over to the dark side because i want to go see the naturpathic doctor.!!LOL!!

[megsRN]

Yes I have access but for some reason im getting no where. Has anyone here ever heard of chronic Lyme Disease and how a lot of pain disorders are becoming found to actually be Lymes? I know i have no tender points because you can push anywhere on me and no increased pain, just hurts all the time!! Thats how I was diagnosed, by eliminating everything else with tests ect but because Fibro has no clear test to say its fibro!

[opus88]

hi everyone, I pop in here occasionally to see whats posted and if I cna learn something new....I'm in the same boat as all of you, wondering IF this is FM or just an easy dx...
I did learn a few things since the original dx 13 yrs ago....the pain in my legs is not FM, perhaps other parts of my body yes, but not in the legs as first dx'd.at least not totally(?).....it took another 10 yrs of doctoring to finally get an MRI and see that the cause was DDD and herniation in my spine, thus causing radicular pain thru the nerves and down my legs....
I still suffer from shoulder and upper back pain as well as chronic fatigue. and my doctors have FM on my file so everyone I see continues to treat me as an FM patient, maybe I am? I don't know anymore.

I have been on gabapentin(neurontin) for about 6-7 yrs...and its been a miracle drug for me, for the sciatic pain that accompanies DDD and radicular pain. So its good for many types of nerve related pain...

I don't hold much for the point and touch....does it hurt here dx. crazy in this day and age thats all they have for scientific diagnosis wow...elimination and than point and poke, come on.

the type of pain most of us feel can be attributed to so many other problems and yes FM too.....and most of the same medications to treat as well.
So how do we know really?

[supermomma531]

Just out of curiosity, since you are a RN, do you not have access to information or to specialists better than a regular patient would? I know here in Canada, our one hospital has a huge medical library for the nurses and doctors to go to as needed. But do you know anyone in your profession who you can talk to who is a rheumatologist or a specialist of many different chronic conditions? Talk to your co-workers, someone may be able to point you into the right direction. you know, maybe one of the other nurses or doctors you work with on a daily basis may be able to help you somehow. I commend you for all of your hard work that you do, it is a very stressful, physically demanding job. The only thing that I can tell you as a fibro patient is this, make sure you are eating right all the time and make sure that you get the proper sleep all the time. Always take care of yourself in every way imaginable. Take it one day at a time, and beyond your job, try not to overdue things because that can actually make you feel worse sooner or later. I know that besides ruling out many different conditions to get this diagnosis, there also has to be at least 11 out of 18 tender points that the doctor will touch to see your reaction. I only went through this after going through the elimination process. I was also diagnosed by 3 different doctors because I didn't trust my family doctor at the time. Now I have a new family doctor. A rheumatologist will be experienced in this area. You'll have to be referred to a rheumatologist though through your family doctor. I probably haven't told you anything you didn't already know, but sometimes it helps just to have someone to talk to. If you want to talk, I'm on here daily and you can pm me anytime.

[megsRN]

Thank you for your kind thoughts! I guess we shall just take one day at a time... I hope today proves to be a comfortable day for you! Thanks for allowing me into the group!

Megan

[927]

Hello, I am like you in that I wonder too if it is fibro or if the docs are just baffled and jumping to this diagnosis.  You have a beautiful family and a very demanding job. Welcome to our group.  I am new here too. I think that fibro even baffles the doctors, monsterjam is right in that when all other things are ruled out and the only thing that they can think of is fibro then that is what it must be.  I think they stop looking after  awhile.  I hope that today is a good day for you.
927

[megsRN]

Thanks for the information! I don't know if there are any knots, as well as I don't feel any increased pain when palpating the painful areas either. I only wonder because so many websites are very stern that these points need to be present in order for it to be truley Fibromyalgia! I guess I just wanna know so if not I can find out what it is!

Have a nice weekend!

[monsterjam2]

There are a number of ways that Fibromyalgia can be diagnosed. It is a diagnosis of exclusion. Meaning, it is not uncommon for it to be diagnosed once everything else has been 'ruled out'.  The areas of your pain are most likely trigger points, and if you push & poke around them, you might find a 'knot' in there that is painful.  Some of my trigger points are not in the classic areas, but have a knot & are painful.

Whether or not Cymbalta worked for you is in no way indicative of the diagnosis.  Cymbalta may work for any 'pain' syndrome, and potentially for depression, anxiety,  and diabetic neuropathy. There are no drugs that are 'specific' to Fibro (I wish!! :))

Hang in there with all the med changes.  It takes a lot of trial and error to find  the combination of diet, exercise, and medications that provide the optimum functioning capacity for you.  Best wishes!
Beth