Feeling like it will never get better

[shea]

I'm at a place where I feel like this pain will never end.  Last visit to rheumy she said my bone and joint pain was fibromyalgia and upped my dose of neurontin to 1800mg.  The past 3 days I'm in so much pain that I feel it even laying still.  I've missed approximately 8 weeks of work this year already and this week I haven't been in yet.  I haven't showered for days.  When I do get out of bed I'm fine to sit on the couch and then ecerything hurts when I move.  Elbows and shoulders are the worst.  Sorry for the rant.  I just can't stand this!!  Mouth is dry and been dealing with a tonsil stone for more than a week.  That doesn't help.  Rheumy is out of the country.  Ugh.

[Carolina]

Shea, have you tried Cymbalta?  I didn't see it in your list.  Almost ALL SSRIs help with pain.

Sometimes I think we need to list what we have already tried that didn't work! 

And Turmeric, as well, can help.

I used to rely on Aleve, but dropped it when I started Medrol.

Of course, a brief taper of Prednisone my interrupt your pain cycle and give you some relief.

Just throwing out ideas here.

Hugs, and sympathy, Elaine

[shea]

Elaine, I'm not on Cymbalta.  My rheumy mentioned it twice but my Citalopram is for anxiety and she's worried if we switch from one to the other it will make my anxiety worse, so she hasn't switched me yet.  Rheumy is out of the country right now.  I have two cuts/sores in my mouth and am dryer than usual, another labial cyst forming (I can feel it just like the last one) a tonsil stone that is bothering the heck out of me and all this pain and fatigue!!  I will call my family doc at noon and see what she thinks.  I'm just tired of not being able to get up and go to work.  By evening it's tolerable but mornings an afternoons are just awful.

[shea]

Oh and rheumy has never mentioned using pred.  She did tell me I could not have methotrexate because my immune system couldn't handle it.  I do have an appointment at the end of August with her colleague to discuss IVIG.

[Joe S.]

Rants and vents are okay. That is part of the purpose of a support forum. The model of support groups is "Helping you helps me." We should try to support others.

Back in the 80's several nurses I knew with fibro died of overdose Rx'd by doctors. There was no comforting them as human doctors never make mistakes in their minds. The ones that survived use Complementary Alternative Medicine or CAM therapies. I used to post these in my welcome to new people. The tonations for fibromyalgia have helped many find remission though the take 30 days.

Doctors have changed the definition of what fibromyalgia is several times since the early 1980's. Chronic pain, small connective fibers that grow through the brusa to todays auto immune disease treated by a rhemy. Through all those stages, pain management techniques have helped even when the doctors refused to Rx pain medications. I suggest that you try management with your medication.

[shea]

Thanks Joe.  I will look into that.  I wish the pain I'm having was considered "chronic".  It's all new.  The only thing that hurts now that hurt a year ago is my back and that is from an injury when I was younger.  Everything else is within the last year.  Most of it this year an getting worse by the month. 

[quietdynamics]

The combo of Cymbalta and Neurontin manages the pain I have with Fibro.
And yes, there have been many times I could not even take a shower.. 

Anxiety... is it being triggered by pain? Has that been investigated.
Mind/body <----> body/mind =  cycle.  Both need to be calmed, I find.

I just recently had severe pain in my joints and bones, muscles, tendons? Did not even want to eat anything..
Regular med combo was not mangaging it.. in fact felt more like the days pre Dx, and meds.
Wished someone would just 'temporarily" disconnect my one leg and arm.. set them over in a corner so I could have some pain free relief. My face takes on a greyish pallor at that level of pain. It is exhausting and soo disheartening..

Remembered a study I had read that talked about Excedrin working better than other OTC.
(3 Advil had not worked)
Bought generic store brand extra strength and it worked.
(The caffeine made me spacey for a few minutes or maybe it was as I mentioned above .. not eating, but it passed within a few minutes)
I was shocked.. and so relieved.

So inflammation pain.. not fibro pain... SJS pain. 

It is very difficult to differentiate between the two pains.

Perhaps you can call your PCP and ask?
Hope this helps..

[SjoDry]

Hi Shea..

So sorry that you are suffering so much. I read what your doc said about Methotrexate. My Rheumy has suggested that I should think about starting Methotrexate on my last two visits.
I was very worried about this because I have CVID (Common Variable Immune Deficiency) & did not want to further compromise my immune system.

However, at my last doctor's appt. with my Immunologist, I discussed this with him. He said it would be fine to take Methotrexate & he has several patients on it. He did not feel that it would compromise my (already compromised) immune system too much.

He is a fabulous doc & I trust everything he tells me. So I am strongly considering starting it, when I take care of a couple of other serious medical issues first. If I were you, I would definitely find a good Immunologist (I am assuming that your doctor's colleague is one?). For my mouth ulcer issues, I use NeutraSal which helps me a lot.

Good Luck. I hope you are able to find some relief and a dream team of Docs    It has taken me years...but I have a team of docs that are great.

Take Care.
SjoDry

[Joe S.]

1 dont panic
breathe
Meditation
carrot juice / reflexology
suplements

these can all be part of your management plan that also includes medical drugs.

[shea]

Thanks Sjo and Joe.

Yes Sjo my appt in August is with a doctor that does a myriad of things.  She is allergy/immunology/rheumatology!!  I'm wondering if she choses to treat me if she will be the only one I see in the future....??  I do hope there is a chance the IVIG would make me feel better but if mtx is available too I would try it for sure.

Joe I try really not to panic but when I think of how much money we don't have when we were already struggling it hurts!!  Plus since I'm missing almost 50% of work currently it scares the life out of me that I could lose all income together and our insurance.  I'm trying to breathe one breath at a time...