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Janice334
Posted Sunday, April 06, 2008 10:29 PM


 

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I've been diagosed with RA and Fibro for 3 years now and I am still looking for answers. I am taking multiple arthritis medications including remicaid. and have been on pain medication for almost a year. I am trying to understand which disease is making my pain so bad. I have alot of joint pain mostly in my si joint and in my knees. But in reality I am in pain constantly. I feel like I am on a neverending roller coaster. I'm never pain free and I feel like I am missing something. If I am taking all of this medication for the RA and fibro shouldn't I be feeling better??
I feel like I am just getting used to the pain med's and we have to keep increaseing the dose higher and higher. Not to mention that the cost of all the meds is killing my family. Does anyone reach a point where their pain is under control??
if so how are you able to achieve it? I'm not really sure who to even ask. my rheumatologist at times kind of brushes aside when I try to talk to her about the pain, she just say's "well you have arthitis what do you expect???" I don't know what to expect that is why I'm asking??????
I'm frustrated, I know arthritis causes pain, I know fibro causes pain. Does it ever come under control???
thank you for any input.
Janice
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Emmab2003
Posted Monday, April 07, 2008 11:35 PM


 

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I dont know enough about RA to say anything about that.
With the fibro, I watched a webinar (seminar on the web) from Fibro and Fatigue centers the other day.
Of course it was sort of an advertisement for them, but they had some good ideas.
Mainly, to treat all sorts of things and not just focus on one area.
Things like sleep, nutrition, gentle exercise only as far as you can take it, and then even looking at other conditions which might cause things to happen. In my case, thyroid disease set off my fibro. Supposedly fixing the first, should have helped the fibro, but it didnt necessarily.

Anyway, I think the key is to find the very best combo of things which work, and work at the time you need it.

Maybe you could do some research and tell your physician you dont like being on all the meds, could you try some other ideas?
This probably doesnt help much.
I sure do hope you feel better soon.
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AnnB2
Posted Wednesday, April 30, 2008 11:34 AM


 

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I can't speak to RA but have had fibro over 20 years. READ The Fibromyalgia Solution by Dr. David Dryland, published in paperback May 2007. He claims a cure for fibro through sleep, exercise, diet and stress reduction. Much of what he says I can verify. For example, the only pain relief I got was from Tylenol: NSAIDs don't work for me, anti-depressants and opiates create intolerable side effects. Tylenol PM or Flexeril 5mg will get me into stage 3-4 sleep, but have constipating effect. Fortunately I was able to quit my job after son graduated college. My symptoms always return after 6 months or so of part-time work. Just my experience. Good luck!
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Emmab2003
Posted Friday, May 02, 2008 1:25 AM


 

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I think the actualy cure is to just treat the affected areas (which in turn makes symptoms better). Both that book and other research just seems to point to sleep, exercise stress reduction etc as 'the cure'.
But I guess the problem is finding out what works for you, because everyone seems to be different.
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Janette H
Posted Thursday, July 30, 2009 11:44 PM


 

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Hi, I do have severe Fibro and Ankylosing Spondolitis and I know what you mean

I live like that everyday, the pain according to my Rheumatologist will never go away, you need to know hoe to manage it, did you ask your doctor to send you to Physical theraphy that helps a lot plus, they will give you easy exercises, so when you are in that intolerable pain you can do it they are very easy, also talk to your Doctor about TENTS UNIT, that really helps me because you can use at any time, and sometimes you do not need to take a lot of the pain medication I guess something is something.

If you have any other query please do let me know keep in touch

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karen carnemolla
Posted Tuesday, August 04, 2009 1:35 PM


 

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I'm new to this site and so glad to find others who know what it's like to be in pain all the time. no matter what I do or what I take I'm never pain free. It's so frustrating because most people don't understand fibro and say "you look good" even when my body is screaming. my husband tries but he definitely picks up on my frustration and doesn't get it. I look forward to supporting others and hopefully finding some support in return. Lyrica didn't work for me so now I'm on neurontin, which never really "controls" the pain. thanks
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Grandpavan
Posted Tuesday, August 04, 2009 9:29 PM


 

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In addition to posting on this forum you might check out the Rheumatoid Arthritis forum.  Pinned at the top of that forum are a few threads that deal with constant pain and may be helpful to you.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
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starshine
Posted Saturday, August 08, 2009 1:53 AM


 

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Welcome to the site, Karen.  I don't have fibromyalgia but I understand the disease.  starshine
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Donna Henry
Posted Friday, September 18, 2009 11:08 PM


 

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Hi janice-

i too have fibro and its all new to me. I am also in constant pain at times keeping me on my back in pain for days.  My rheumy is treating me in steps and im responding well to this approach. she first treated RA-sjrogrems- sleep difficulties as well as sleep apnea the she will treat the fibro.

Hope this helps- thanks for bring up a topic good for a lot of people.

Donna

Dx: RA/Fibro/Sjogrens...Hashimotos (thyroid), Sleep Apnea, Hypertension, and, of course Depression

Rx: RA:  Hydroxychloroquine, Gabapentin, Methylprednisolone, Diclophenac Sodium, Methotrexate, Folic Acid, Tramadol, SIMPONI  ///Sjogrens: Evoxac, Restasis /// Depression:  Effexor, Nortriptyline, Abilify /// Blood Pressure: Atacand, Norvasc /// Sleep:  Sonata /// Thyroid: Cytomel, Levothyroxine /// Stomach Acid: Ranitidine

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Bette44
Posted Monday, September 28, 2009 2:23 PM


 

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Janice,

It is hard to answer your question since we don't know what all medications you are taking and what kind of joint damage you have sustained. But, it seems to me that if you are still hurting the meds you are on are not sufficient to get the job done. I know, for me, starting plaquinel and Savella felt like a new lease on life. I went from a pain scale number of 4-5 all the time with flares of 6-7 to 1s,2s &3s today. After living with 4 & 5 pain constantly, 2 & 3 is a piece of cake. I noticed you said your Rhuemy brushed off your questions about pain. Any DR who brushes aside any question you have is not listening to you. A Dr who does not listen to you and answer your questions about your health is not working with you. They are working without you and that is a recipe for disaster. I would strongly advocate making an appointment with your Rhuemy and making sure they schedule enough time for you to have all your questions answered and if your Rhuemy cannot help you find answers it is time to find another Rhuemy. Remember this is a person who is expected to work for you for the rest of your life. They have to also be able to work with you. As always take what you can use and toss the rest.

God bless and keep you,
Bette

Current DX: Inflammatory Ostearthritis (apparently this is not an oxymoron), IBS, Fibro.
Current Meds & what they are for: Plaquinil (arthritis)Triamterene/Hctz (decrease water retention), Dicyclomine (IBS), Ropinirole (Restless Leg), Lexipro (AntiDepressant), Allopurinol (Uric Acid Reducer), Lortab (Pain), Flexiril (Muscle spasms), Savella (Fibromyalgia), Omeprazole DR (decrease stomach acid), Naproxen Sodium (Anti-inflammatory), Omega 3 Fish Oil (anti-inflammatory), Super B-Complex, Concentrated Black Cherry (Uric Acid Reducer).

 

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SassySyl
Posted Wednesday, September 30, 2009 12:19 AM


 

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Hi and Welcome to the forums.
I have been dealing with fibro for over 20 yrs and with JRA for 40+ yrs along with PsA about 18 yrs or so...

To answer your question: I have personally met and spoke with Dr. David Dryland. I have also read his book and took the DVD suggestions for treating Fibro. I don't agree completely with his take on a cure for fibro however, I will say that diet and sleep control are 2 major keys in keeping the pain at bay. Exercise-as much as your body can tolerate it-is good also. With this done, there is a sense of controlled fibro. But I do not think if it is secondary to a major player such as RA that we will see a cure. RA is an overall worker on the body, and this will aggravate the fibro. Its an evil cycle.

I hope you can find some relief soon. Check out the place that Grandpavan suggested. Great information there.

Warm Thoughts,
Sylv

JRA, OA, PA, and Fibromyalgia

Medication Mix:
Humira 80mg; MTX 30mg; Prednisone 2.5 to 5 mg; Xanax 1 mg; Tylenol extra strength (when needed on very bad days); Darvocet 100mg


A smile is worth a thousand words and a kind word is worth more than a thousand smiles
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Donna Henry
Posted Saturday, November 07, 2009 10:50 PM


 

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Hi Janice,
Im sorry to hear you are having difficulty at this time. I was reading your story and realized our story is similar. I have started recieving a new medication for my RA (simponi) and finally after 4.5 years my inflimation and sed rate are starting to improve. I still have a great deal of pain and explained this to my doc. and last year she diagnosed me with fibro. Im not sure if I can start lyrica or not due to fear of weight gain and possible drug interactions. For me, the fibro pain causes me a great deal of pain, and you put it so well about the "roller coaster." These diseases have caused me and my family both emotional pain and financial pain. I certainly hope things get better for you Janice.

Donna

Dx: RA/Fibro/Sjogrens...Hashimotos (thyroid), Sleep Apnea, Hypertension, and, of course Depression

Rx: RA:  Hydroxychloroquine, Gabapentin, Methylprednisolone, Diclophenac Sodium, Methotrexate, Folic Acid, Tramadol, SIMPONI  ///Sjogrens: Evoxac, Restasis /// Depression:  Effexor, Nortriptyline, Abilify /// Blood Pressure: Atacand, Norvasc /// Sleep:  Sonata /// Thyroid: Cytomel, Levothyroxine /// Stomach Acid: Ranitidine

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