HELP! In a flare and mad as hell

General
1

I finally start trying to get some work going for myself and after a few weeks I am bed bound. I was so happy doing something productive with myself and now I am scared. I feel like I will never be able to work but I have to to survive. My neck hurts worse than I have ever felt. There is a knot (or something) in my neck that is the size of a golf ball and sore as hell. The dizziness is off the scale and now numbness is setting into my legs and arms. I had to give up all narcotic pain meds because I became addicted. There is not much I can do. I've tried heat. massage, acupuncture, tens, blah blah blah and yet it gets worse.

I've had this insidious disease for 10 years now and this is the worst pain yet and the most frightened I have been.

What to do.....

2

Please please, go to the doctor! Whereas it all may be just fibro, that knot in the neck sounds concerning. Please get it checked out right away.

If it turns out that it's fibro, I can only send you my heartfelt commiseration. Work and fibro people do not seem to mix, and yet work is what gives a lot of us purpose.

Since it sounds like you have your own business going, can you set your own hours? Can you set naptimes for yourself? I find if I nap thru portions of the day, I'm usually human again in the late afternoon. Or can you only work a few days and/or hours at a time?

I sure as HECK wish I had more to offer. It's extremely difficult. I've only been working since May, 3 hours a day, 5 days a week, and it's killing me.

Fibrokitty mentioned a medicated cream that she gets thru prescription that helps. Maybe you could get some? It's in her thread about dialudid. If you can rub it in, maybe it would help ease the pain in some of the worst spots.

Dizziness - some have said magnesium helps for that, I believe. You might wish to go back and reread the most recent threads on the matter. But I hear you. I had to lie down today (Sunday) and sleep for hours due to it and fatigue.

Fatigue - you need sleep. It seems that the more we do, the more stressed we become, physically and otherwise, and the more sleep we need.

Numbness - have you seen a neurologist? That's what my rheumy suggested to me. I haven't followed up with it yet. Feel too doctored out, at the moment.

Unfortunately, you're right, it's all (except maybe the neck thing) fibro stuff. I'm sorry. I know how hard it is for you. Just come here and we'll do our best with advice and suggestions. You'll find some helpful hint in our threads. IF you go thru the ones I've highlighted to you, you may get some relief from your woes. I also had a thread about dizziness (you can use the search bar at the top to find it) wherein a lot of good suggestions were made.

Good luck!

Yours in fatigue,

Petunia

3

Hello nmamommy,

With symptoms like these after 10yrs and they seem serious you do need to see a doctor ASAP....as everyone can only take so much and you really sound stressed out.

Your symptoms sound to me like nerve trouble or a nerve trapped as these can cause these feeling...please see someone and keep we all updated, as my concern is the numbness to your arms and legs.

I wish you all the very best Terri xxx

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Mommy, did your pain management doctor take you off your medications or did you feel that you were addicted and take yourself off of them? What were you taking at the time?

I understand the pain and frustration your in. I was working and doing unbelievable until I was rearended by a semi truck. I have been in a flare since 08. It drives me insane! I do tend to feel better and go through less medication when I am working because it takes my mind off of the pain. However I have to find the perfect job for me.

I hope you come and chat more often. I tend to not feel so alone when I am here.

Ciao Bella.
Punkin.

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Dear nma,

Punkin brought up some good questions, and perhaps if the Drs will allow, you could use a pain patch, but you CANNOT exceed the dosage! But tell us who decided this if you will, please, you or the Doctor.

Another possiblity may be this low dose Nattrexone, if you can get it from your Doctor. I know there was controversy about this when Marygrace first presented it, but I have spent several hours researching it, as did Renie, and she is definately onto something there, and it is FDA approved!

There have also been several posts on Lidocaine infusions available through pain management, this is worth consideration too, I think.

Anyway, please remember that with LDN you cannot take narcotics. You can look it up or you can see her blog on LDN, explaining it. She is a nurse and social worker who did her master's thesis on chronic pain, so in my humble non-medical professional opinion it may be an option. We all may need that option sooner or later.

http://www.ehow.com/facts_5625681_difference-fibromyalgia-chronic-myofascial-pain.html This link is worth a look, just remember this is not a diagnosis, it is a possiblilty, but all of this needs to be discussed with your Doctor.

That cream that Fibro Kitty was telling on us about her post about her progress with her pain meds is surely worth all of us looking into!

Good luck to you, my friend, hope you can get some serious relief! Go easy on the OTC anti-inflammatories they come with their own set of problems!

Hugs,

SK

6

Punkin, my heart goes out to you girl! I know you suffer! I hope you are getting some relief!

I agree, I don't feel so alone now that I have found Ben's Friends, it is such a comfort to discuss this with other people going through the same thing! I think it takes some of the 'heat' off my husband, he has heard me complain long enough now!

7

Susan,

Smack on mate with your comment...i've found with being with LWL eases the pressure off them close to we but we always have our 2nd family's to turn to who are suffering in the same way and understand one another totally.

8

Thanks everyone,

I am more than familiar with Naltrexone. I spent a week in the hospital detoxing from the amount of pain medicine I was being prescribed. It started at the beginning with Tramadol and led up to a year ago when my doc had me taking 200MG of morphine a day and provided endless refills of Ativan and Soma, and I was a zombie. While I do believe the doctor was negligent, there is no doubt that I am an addict. That being said, pain patches are not an option. Monthly injection of Naltrexone are offered as a deterrant to the use of opioid medications as it blocks the action of these drugs. When I read about LDN I asked to give it a try. 6 months later and things are just worse. I have tried Lyrica, Cymbalta, Neurontin etc and nothing works. I have not been able to get the lidocaine blocks because I do not currently have health insurance and cannot afford it. So thats my story in short form.

Thanks again for all of the help!!

9

It sure seems like a suspiciously large segment of our population here started their journey into fibro with car accidents. Even understanding some of the mechanics of what may make fibro work, it's hard to understand why accidents seem to set it in motion if it's present but silent before the accident. It really seems like the illness is there within us and is a ticking time bomb that goes off when just the "right'" stressor attacks our body.

10

Oh, well that's a completely unlucky break all of the way around! What a shame that the other meds don't work for you and the opiates are too addicting. I use ice, which helps sometimes. I'm sure you know that trick already, though. Can you use the cream that FibroKitty mentioned? I don't know much about it, so forgive my ignorance in asking if you've already been there and done it. I know I'm gonna ask my doctor about it though, cause like you, my pain doesn't respond to much.

What about accupuncture? On and off I've heard people claim to have good results with it.

What about a pain clinic? Have you gone the route of the steroid injections?

Wish I had a better list of things to suggest to you!

11

Lets try this one again. I went to go look up something while replying and when I switched back my reply was erased so lets see if I can remember what I was saying…

Most ER docs and doctors unfamiliar with FMS, CFS, MPS are under the doctorine that FMS shouldn’t be treated with narcotics. I am going to try and reply without offending you and being gentle with my thoughts so bear with me.

You are in pain correct? (What’s your FMS pain scale 1-10?). I wish most doctors would understand pain patients better than the typical person who had had surgery, given loads of narcotics and then hooked on them. We are NOT like most patients. We are constantly in pain soooo we do need our narcotics. Yes we will go through withdrawl symptoms but THAT’S NOT addiction. You said you were zombied because of the morphine, soma, and ativan. Did you ever try the pain med without the andidelressant or the soma? You seem to not be getting any relief from what your trying. I would ask to try the pain patch without the other stuff attached to it. You are the only one who can take control of your meds. A lot of lain management docs put people on anti depressents because they are depressed about the pain. Hello get us out of pain and guess what we are not depressed anymore then we need to take the anti depressents because we don’t want to go through the withdrawals…its a vicious cycle. I stopped taking my cymbalta because I knew that if it were not for circumstances I wasn’t depressed it had nothing to do with an actual depression. I am 99% convinced that you would be fine just on pain management meds. uNLESS you tell me that if you were not in pain you’d be out buying narcotics off the street.

I hope I made sense. Its hard for me to make sense of what I’m saying LOL
Punkin.

12

I totally understand where you are coming from and please please understand that I am not saying that people who take narcotic pain meds are addicts. But I am an addict and there is no doubt about that. I might be able to control the amount of pain meds I take, but the drugs would obsess my every thought. I was so hooked on the Ativan and Soma that I almost lost my kids and my boyfriend. I wish more than anything that I could handle these meds like a normal person, but I just can't. I never bought drugs on the street but that does not make me any less of an addict. I never had to buy drugs on the street because my doctor continued to prescribe and prescribe, sometimes filling my Ativan and Soma 3 times a month instead of one. I knew it was a problem and I convinced myself that he was just trying to help. I really believe that taking narcotics now would evenutally kill me . It's a weird situation to be in because I don't want other with Fibromyalgia to think that I am anti narcotics and I don't want my fellow addicts to think I don't always show up because I am "lazy".

I actually tried acupuncture years ago and it was wonderful but I cannot afford it. If you can, do it!! You won't regret it. Right now the only thing that puts a dent in the pain besides rest is capzacin cream.

I do thank you all for your help and concern and please feel free to ask me questions anytime about my addiction. I'd be happy to answer!

Anyway, enough from me for the night. I am going to try to see a doctor this week and hopefully there will be some solution.

13

Okay you did answer what I was afraid off.

I was hoping that some doctor had told you, you were addicted just because you were having withdrawals. This is what angers me. A lot of times its the GP and the Er docs that mark us as addicts. When we are not. There is a difference. But, if it was you knowing that you were seeking them just to have them then that’s a different story.

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How your on about accidents kicking fibro off..it also does the same with Lupus patients...it's so unreal how these symptoms are identical...no wonder rheumo's get confused and if your advanced in the knowledge of them, then that winds them up even more.