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Fibro DX
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3collies posted:
I've had RA for about 10 years and thought that the Orencia I was taking by infusion had stopped working because I felt horrible all over. My Rheumy says I also have Fibro. It was actually somewhat of a relief because now I know I'm not going nuts and that my RA is actually stabilized and the other pain I am having has a different cause. I kept making excuses for the muscle pain (radiating pain from my joints) and the bowel problems (side effects from the drugs) so now I can get to work identifying the symptoms of Fibro and modify my exercise program and diet. Anyone else have bothRA and Fibro?
What things did you do to alter your pain management?
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Caprice_WebMD_Staff responded:
Hi 3collies and welcome to WebMD,

While you're waiting for responses here, I hope you'll also post on our Fibromyalgia community . I believe there are some members there who have more than one diagnosis, including FM/RA.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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Spikypuppy responded:
I have been diagnosed with Fibro and RA. I started taking Savella for the Fibro about 2 yrs ago. It was hard the first couple months getting used to the medicine; but it is working very well. At first my PM&R doc started me at 25 mg twice daily, which really raised my blood pressure (already take 3 BP pills/day), but reduced it to 12 mg twice/day and it really helps. Unfortunately I cannot take RA drugs, I had a brush with aplastic anemia (bone marrow quits making red blood cells). So I had to take disability from my job. I try to manage the RA with rest, anti-inflammatory diet, yoga/stretching. Also for the fibro, PM&R doc recommended doing water exercise. I went to a water therapy class a few times and found some exercises I can do in the bathtub. I do suffer terribly from fatigue; and pain when the weather changes. Volteren (prescription pain cream) helps for muscle and joint pain. Occasionally (2-3 times/year) I take Prednisone. If it doesn't help I know it is the Fibro and not the RA.
 
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socathy1 responded:
Hello,
  • Yes, I have both conditions. I found that the prescriptions strength naproxen my rheumatologist gives me, plus an occasonal Tylenol #3 (ONLY WHEN i AM REALLY HURTING) does the trick. I also juice in the evenings, carrot, apple, kale and celery, organic produce only. I take digestive enzymes plus vitamin D, folic acid and selenium, b vitamin complex and flaxseed oil, organic, cold pressed. The apple juice can be constipating so get enough fiber either in your diet or as a supplement. My sense of smell has returned, I sleep and digest well and I have much more energy than I did on the meds alone. Best of luck to you.
  • Cathy
 
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TreeTopL responded:
[a name="_GoBack">This is mostly a repost of an earlier share on the Fibro forum:
RA, OA, COPD, Fibromyalgia, Degenerative Disc Disease, and about 6 more other conditions. The chronic pain sometimes is all I can focus on, (lately I've been having some success by acknowledging the pain and set it aside). I have depression of course and recently had to up my anti-depressants and engage the use of a counselor for some cognitive behavior therapy. I find rest, low stress, eating somewhat healthfully, regular exercise, and sharing the faith, hope, and love that I have received from others are the things that help me walk through this one day at a time.
My symptoms ebb & flow. Muscle pain throughout my body, thankfully not the extremely sensitive kind, worst ongoing is in my upper arms, they feel like they have been slapped with a 2x4 with the 4 inch side and feel deeply & painfully bruised, and of course they are not bruised, just feel that way. Fibro fog comes & goes, and any kind of thinking beyond the ordinary and routine gets to be very difficult and fatiguing. Memory issues like a piece of Swiss cheese. I can sit down, drink a large cup of coffee and get so sleepy and fatigue that the nearby couch is a better alternative than walking all the way down the hall to the bed room (20 feet). As I have been reading the postings I have closed my right eye as the blurriness of trying to use both makes it impossible to see, thankfully it is only the near vision that this gets to be intolerable. Finally found some good footwear (Crocks) for the numbness, tingling, and overheating of my feet. Stress can set in in my shoulders and neck making them very painful.
If I can just get up out of my chair and get moving I usually feel better. I have a reasonable exercise plan that I follow, More often than not have a reasonably healthy diet. My goal is 8 hours of sleep a night, but have yet to attain 100% use of my CPAP, (about 11,000 hours in 7 years, and recently O2 was added). My 12 & 10 year old boys require a fair amount of my available energy and usually the housework gets what's left over. The house is livable but certainly not spotless, nor does the yard ever come near qualifying for the 'Yard of the Month', but have yet to get a cleanup and cut order from the local governance. Thankfully my Spouse is the cook in the house and that takes a load off. Fibro pain has been mitigated significantly with the use of Lyrica, somewhat from an additional dose of Cymbalta, and for the really bad times, a TENS unit. I can now ride in the car with my arm resting on the armrest, no longer too painful to touch. Fatigue has been tempered with the addition of Nuvigil. Now I can drive the 8 miles from town without wanting to pull over and rest.
Don't know if this post was easily followed, my time is up, look at the positives,
& Best Wishes.

"Look, one day I had gone to a little village. An old grandfather of ninety was busy planting an almond tree. 'What, grandfather!' I exclaimed. 'Planting an almond tree?' And he, bent as he was, turned around and said: 'My son, I carry on as if I should never die.' "

"015 Nikos Kazantzakis, Zorba the Greek
 
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by_his_grace responded:
Hi,3 collies. I was diagnosed with fibromyalgia and chronic fatigue back in 1990, and than was diagnosed with RA this past year. Everyone does seem to have a different story. Unfortunately, we all have to find out what works for us. I was sent to an outpatient rehab center that specialized in diagnosing and treating patients with fibromyalgia. As with RA more women than men get these chronic ailments. The therapist I had for the fibro said there are 18 spots/different areas that fibro people have. I had 15 of those spots. My arms hurt so bad for the first year holding a blow dryer was hard. My legs, and my glutes were terrible to. I found stretching, and deep gentle massage in those spots really helped. I was exhausted, and my quality of sleep was terrible so I take 25mg of elavil started out with 10mg. Plenty of sleep, taking people up on there help, and learn to say no more often. I stayed out of hot showers and any kind of heat made things worse. Paced myself, If I did to much on a day I felt good, I paid for it the next day. I learned everything did not have to be perfect. At the rehab I used massage balls. For my glutes it was great. Just small therapy balls that had soft spikes coming out around the ball. It was real weird at first putting a ball between me and my bottom. I got some funny looks but, I'll tell you it felt great. Noone knows how hard or soft to message you. So these balls were great. It was like I had sore knots and I could use the knobs of these balls to massage those areas, soft, or hard, and how deep I felt. They worked great. I could do my back. Stretching easy stretching really helped to. Be kind to yourself, and take the time you need when you can. My family doctor gave me magnesium sulfate injections to relax the muscles they helped but I don't think that is to wise to do. Ask your doctor what vitamin supplements he might suggest for you. Find a doctor who will listen to you. Back in the late 80's and 90's some doctor just thought it was just a women thing again. If I go to a doctor and he doesn't listen or treats me like this is all in my head, I walk out. I paying him for his time and his service. We are more picky about are car repairmen and baby sitters than we are about are doctors. I found a wounderful doctor, and I tell her every time I see her how much I appreciate her. So, hang in there it will get better. Ask your doctor if there is a rehab center in your area that has a therapist that specializes in fibro. The massage balls you can by on the internet. Also I have heard a lot of people say yoga helped them. I went to a chiro doctor and that helped to. I hope this all doesn't confuse you, but you will find things that will work. Keep your stress down as much as possible because that just makes everything else worse. Find shortcuts. I know its easier said than done. I learned a good nap was more important than a sparkling house. I hope any of this helps. Drink a lot of water, distilled is actually the most pure and it is cheap by the gallons. Watch your sugar, white flour. A good diet is really important. Small walks at sunset are great to. Vitamin D3 helped me to with my RA/Fibro since the heat made things worse. Another thing nice cool pools help to. Good luck and hang in there. God Bless you
 
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by_his_grace replied to by_his_grace's response:
Also to collies 3. I am sorry the massage balls I would put between me and a nice flat wall. By moving the ball up and down the wall with my bottom and up my back. It looked really like dirty dancing, but it felt great. Make sure the balls if you try them are not to hard or not to soft. I know you will find something that helpsl.
 
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3collies replied to by_his_grace's response:
Thank you everyone for your input. My sister gave me some "balls" last year put I hadn't used them because there is no way I can get down on the floor and back up again so I'm excited about using them against the wall. I'm going to get them out of the closet today and give that a try. Thanks!
 
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suedonne123 responded:
I was diagnosed 2 years ago with an atypical presentation of RA (back and foot pain, no redness or swelling of joints, but 4 of 5 blood tests including RA factor? came back positive for RA)...
Feeling a little better after 2 years, but still having strange lower leg pain that keeps me awake at night...They feel like "hot mud" and just ache even though I have not done any exercise...I also have places on my body such as upper arms and especially my rib cage where pressing will cause throbbing that lasts for 5-10 minutes and feels almost like a bruise...compared to same pressure in another spot that just goes away when pressing is stopped...My RA doc thinks fibro and prescribed Lyrica. Anyone have experience with Lyrica?
It is terribly expensive....
 
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ateecher replied to suedonne123's response:
I had experience with Lyrica and it was NOT good. It was prescribed for fibro it made things worse. I was at a point that I couldn't lift my leg to get in the car. I would have to wear pants, sit down, and lift each leg by grabbing the pants leg and swinging the legs in. It also affected my hormones. I was a crazy raging maniac. I was volatile. I would never recommend it to anyone. I take Cymbalta, which I do well with, but may be switching to Sivella (sp?). good luck to you.
 
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ateecher responded:
I was diagnosed with Fibro over 15 years ago and was diagnosed with RA last year. It's been really difficult figuring out what pain is caused by what sometimes. I can't take biologics because of Hystoplasmosis of the eyes. I just started seeing a Psyiatrist. I think this is going to be what I need. Someone to manage all my doctors, treatments and meds. I started new Physical Therapy and am already off one med and dropping down on another. It's been really hard because I'm a teacher and am on my feet so much. I had to get a note from my doctor that I am not able to be on my feet for long periods of time some days.

Fibro pain, as I'm sure you noticed, is tricky. People like to talk with their hands and tap or poke. This can cause extreme pain. I've had to tell people I know well to please not do that. For everyone else I try to stay far enough away so they can't reach me easily.

For pain right now I am take 5-10 mg of oxycodone if I really need it. I take Cymbalta. I take clonazapam to help me sleep. Without sleep I'm worthless.

Hope you find what you need.
Amy
 
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tgteresa61 replied to suedonne123's response:
I sometimes have the same thing, my ankles and feet actually swell, very badly and look red and inflamed. I have a phone Dr appt next month and will ask about this new symptom. It does bother me at night when I try to sleep. I found an OTC that helps the restless leg syndrome that I was also getting with cramps in my feet...
It's just never ending what stuff crops up, and it never seems to stop...oh well, I try to look on the optimistic side of things...
 
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SharonHulton responded:
I have lupus (45 years) and 10 years ago was diagnosed with Ffibro. Lupus is in remission, but fibro has been in bad flare for months. I'm doing a treatment called "Dry Needling", but don't recommend it unless nothing else is working as it is VERY PAINFUL! (go to youtube and put in dry needling to see it being done.) I've been doing it 2x week for 1 month and have 1 more month to go. Yes, it is working, but I put the pain level for the 2 hour treatment around knee replacement or natural childbirth!
 
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lngstandingpain replied to TreeTopL's response:
I admire your courage, TreeTopL. I had to read some posts today as I have had extreme fatigue for about a week and cannot do my housework. Feeling useless and depressed, of course. I have fibromyalgia and osteoarthritis throughout my body, more significantly in my spine. Maybe it is the change of weather?? Anyway... Just wanted to say "Thank you" for your post. I am hoping it will motivate me to get off my chair and go for a short walk.
 
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lngstandingpain replied to suedonne123's response:
Hi suedonne123, I have been on Lyrica 75mg for about 3 years and it has helped in reducing the pain but not as much as expected. (I did not get the same side effects as ateecher). The doctor wanted me to increase it to 150 mg but it made me too tired and drugged out. He then prescribed Cymbalta 30mg - still not enough, so increased it to 60 mg. This seems to be the best possible dosage even though I still feel pain but bearable. I have had pain in both lower left legs (feeling like shackles) for quite a while but the pain is now in the whole legs which now makes it difficult to have a good night sleep (using pillows to lift them up). With fibro you never know where the pain is going to appear. By the way, there is a generic brand for Lyrica. It was prescribed to my sister recently by her doctor.


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