Fibromyalgia Community
This is ALL new to me and I'm just not sure, need advice....
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This is ALL new to me and I'm just not sure, need advice....

A long road has brought me here so please bear with me, I am in a lot of pain lately and emotional but will try to keep it relevant.  I am 34 year old female, but that number betrays me-I feel atleast twice my age.

Since I was a child, I have had unexplained joint pain that seems to be aggravated by the weather.  Every winter my  right knee causes me extreme pain if I keep it bent for very long, I have to wear a brace to keep it straightened.  My ankles, shoulders, and hips would hurt and my arms and legs would feel like they were filled with lead if I exerted myself.  I feel like a crazy person every time I try to explain all of this, but....I feel exhausted most of the time but I have always had problems with insomnia.  It makes NO SENSE.  Complaining about it never fixed anything, and everybody just seemed to label me as a "whiner" or something so I learned to keep my mouth shut and live with it.  Maybe I really was being overly sensitive?  Did everybody feel bad all the time and I was just being a wuss?

I began having my biggest problems in my early twenties.  Pain and stiffness in my neck and shoulders.  Tingling and numbness in my hands/fingers to the point that it would wake me at night or keep me from being able to do things like type, open containers, etc.  Headaches daily.  My whole body just feels achy and stiff.  Also chronic constipation, although I never thought to relate it to my pain issues until now.    

The tingling/numbness was a red flag to my doctor, who ordered an MRI on my cervical spine and found several small herniations/bulges.  I have had another since and it has worsened slightly, and I have been DX'd with degenerative disc disease and been in pain management for the past several years.  According to the doctors though, the physical problems found on the MRI are not severe enough to cause the amount of pain I am reporting to be in.  It has been implied that I am making a mountain out of a molehill, not sucking it up...that some people with my degrees of herniation walk around completely unaware of their condition at all.  They still treated me, but it is so disheartening to have someone tell you that you aren't feeling what you ARE feeling.  On an unmedicated day, I was living at about 6-7 on 10 pain scale.  I think the reason they always treated me anyway was because they could physically examine me and see that I was constantly in state of spasms.  The muscles in and around my shoulders are like boulders.  Medicated days I am still at about 3-4.

Over the years I have learned to manage.  If you live with something terrible long enough it becomes your version of normal and I've learned to cope with it.  But recently I have developed lower back pain that I CANNOT live with.  I am still in pain mgt and taking meds but they just don't even touch this.  

This lumbar pain is so severe that it is waking me about every hour at night and I am in tears.  I have even gone as far as to replace my mattress with a memory foam one out of desperation, but it has not helped at all.  When I wake up I can't move, it takes me a few minutes of rolling and pushing/pulling to get myself out of bed....and then my back is stuck in an arch for about an hour while I lean against a heating pad on the couch and wait for my muscle relaxer to kick in.  I can hear my discs popping in or out of alignment when I start moving again (the noise you would hear if you "popped" your back, neck ,or even fingers).  I am in Louisiana ,and our weather has been crazy lately....25 degrees one week and 50 the next.  I have noticed that it is definitely more severe on nights that are colder.  

I have a decent doctor now and when I told him about this new pain he suspected arthritis and ordered an MRI on my lower back.  I expected it to come back with some horrifying joint damage with the amount of pain I am in every morning...on a 10 pain scale I am at 11!  It did detect a small amount of arthritis and what he described as my spine looked like the spine of someone who had done manual labor/heavy lifting their whole life.  Which I never have, because I have always been in pain and avoided things like that-so I have no idea what that even means.  But in other words it found nothing severe enough to justify the agony I feel.  THIS doctor wasn't as dismissive as others have been, said that MRI couldn't show muscle spasm, my pain level with the same condition isn't going to be the same as the next person, etc.  He is also the first one to mention the possibility of fibromyalgia, which is what led me to search here.  

I am now wondering if my pain mgt doctor before suspected fibromyalgia, because several years ago I was put on Lyrica.  I didn't stay on it longer than a few months because while it helped me, I also gained a lot of weight (40 pounds in 4 months).  

My doctor does a lot of injections- facet/epidural-and the facet was his suggested next course for arthritic pain, but my instincts are screaming NO.  I don't know if they think I'm exaggerating or what, and I believe I have arthritis because they saw it there, but I don't want to treat the minor boo boo they saw....I FEEL a MAJOR issue, that just can't be it.

Can this be fibromyalgia?  What should I do at this point?  He didn't diagnose me, he said it almost in passing...like "or it could be fibromyalgia" and then moved on, so I don't even know if I should take that to mean he doesn't normally treat it and I should get a second opinion.  He offered to change up meds or schedule injections, but I told him I didn't want to do anything yet because those results confused me more than offered me any answers ,I'd like to think about it until next appointment.  Meanwhile every morning is horrible, I dread going to lie down each night.  I hate this so much!!!!
5 Comments Post a Comment
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2094297_tn?1345392693
  Lyrica is a treatment for pain management mostly used for patients with fibromyalgia, from what you described it sound like arthritis, and it never hurts to have a second opinion, you know your body better then anyone else...
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1530171_tn?1362547225
Hi Dragonlady78.
Welcome to the forum.

It's true. You are still so young to be suffering like this.
My suspicions.
1. Arthritis - possibly started as Juvenile idiopathic Arthritis-
2. Tension Myositis Syndrome.
3. Neurotransmitter Dysregulation.
4. Underlying infectious condition, unresolved trauma.

With reservation I will say that FMS may be a distant possibility,
however, digestive, gastrointestinal and colon health should be investigated
thoroughly, since 80% of the body's immunity lies in the gut, and the new sayings is: You are what you absorb, what you assimilate and how you eliminate. Deficiencies must be ruled out, intestinal integrity must be verified as well as efficient elimination.
Also a low PH (acidic environment) promotes disease and increases pain
sensation.  Try for a more alkaline diet.
Low carb diets are very good for arthritic conditions as well as FMS.

My ultimate suggestion is that you need to consult with a good Holistic Practitioner, who can facilitate for you a complete makeover, and I'm
not referring to your looks and beauty lol!

Let me know what you think.
Wishing you well.
Niko


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4781880_tn?1359395334
Firstly I can say I fully understand as I have lived with a painful spine condition for the last 30 years.  Reading your post screams fibromyalgia or arthritis to me however I am not a doctor just a person who has experienced extreme pain.  You may benefit from some anti-inflammatory pills and some advice on exercises which may help.  I have found that not exercising makes my problems worse and the pain is definately worse in the colder weather.  If pain is localised you could try heat patches or a type of gel which can be applied to the area.  I find that if the pain is keeping me awake at night a couple of painkillers about an hour before bed and a hot water bottle to take with me usually helps.  I hope you get a diagnosis soon although that won't help with the pain at least once you know what you are dealing with you may find a way to live with it.  Good luck
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1530171_tn?1362547225
Anti-inflammatory pills will work for pain related to inflammation, which may be the case here for some of the pain.
However, should it be tension myositis syndrome or neurotransmitter dysregulation they will do very little to help with pain.
There are many types of pain and it helps to verify the underlying condition before resorting to pain killers and other pain management pills.
Some may offer temporary relief, yet could make your condition(s) worse in the long term.
Should you be tempted to do something on your own, I have posted
much pertinent information on many of my replies her, all holistic and natural.
You may also do a search here in this community for IWILLDOTHIS for some alternative medicine appoaches to pain and fms symptoms.

Cheers!
Niko
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Thanks everyone for the comments and suggestions.  I was on Mobic until about 6 months ago, we did a medication change....I do get a little relief from anti-inflammatory meds, but not anything to write home about.

Interesting to hear that low carb is good for arthritis, that deserves some research.  I have been told that it would be good for me anyway due to a hormonal imbalance  (I gain weight very easily and tend to get ovarian cysts), and I am at high risk for diabetes with family history....I have tried it before with much success in weight mgt but it is so hard to stick to, I need to buckle down if it spares me pain as well.

We've had warm days for a week now and I'm still experiencing the lumbar pain.  I don't have an appointment until the 13th, so for now I smell like Bengay all day.  I have found that I can speed the process of straightening out in the morning a little by pushing my back against the wall and flattening my lower back, then leaning my upper body down to separate those discs.  It is more painful in the moment and everything pops, but I can move afterwards and it doesn't take as long to recover from the stiffness/soreness after I get up and moving around.

It feels like my muscles are staying in a constant state of spasm/tension, locking up and pulling me out of alignment.  When I wake up my lower back is stuck in an arch.

I will search for the alternative medicine approaches, I am willing to try anything.  Currently I am on prescription acetaminophen, muscle relaxers, also topamax for tension headaches I get daily from muscle spasms, I take OTC ibuprofen, I'm using Bengay cream during the day and pain patches at night, I use heating pads also, I have a TENS unit, I'm even using medical grade magnets...I'll try chicken bones and rabbit's feet if that helps anybody, I am that desperate for a good night's sleep :(



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