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mainelady10 posted:
I have been diagnosed with mild RA and fibromylagia. I am taking pplaqunil I am always tired and the last few days I am not only tired but feel very weak in my legs like if I had the flu, also i get short of breath when i exert myself. Along with zoloft i also take amtripalyne for sleep which does nothing to help my sleep but it has reduced my pain. I do not sleep well but do stay in bed alot I just do not know if this is RA and fibromyalgia related or is something else going on. I am really at my wits end, so tired of feeling no well. I have also been treated in the past for lyme disease and babesisos and those test are negative now. It is so hard to disect this as they are so much alike in symptoms. I just need so help
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xperky responded:
Hi mainelady10,

I have been diagnosed like you, RA being recent and FM a couple years. Have you been on Plaquinil for long? I was just wondering if your body is having to adjust at first or if you might be having a flare.

When I have an FM/RA flare, I feel a lot like you described here. Staying in bed has positive and negative effects on me, so I have to get moving to work out the stiffness for a while. I do find my heated mattress pad a great help for pain and stiffness. Do you have one? My husband found me one at Costco last year. He's so thoughtful sometimes.

I hope you are resting a lot for now, and beginning to feel better. If not, then it's soon time to call your dr.
 
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mainelady10 replied to xperky's response:
Hi xperky, thank you for your response. I do think it is a flare. I have been on Plaquenil for 8 months today is the best day I have had in a week. I also experience night sweats Have you had them? I did make an appt with my dr at the end of the month. My feet really hurt today. Everyone talks about their hands but it is my feet Hands so far are ok. I also am not stiff getting up in the am, but i get stiff sitting. I hope that you are doing well. Thank you again
 
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xperky replied to mainelady10's response:
I understand about the night sweats. What I actually do is maybe weird, but I put on the ceiling fan so I can use the heated mattress pad...LOL. The combo keeps me more comfy than either alone. Maybe because I use less covers?

My feet, like yours, got RA way before my hands. I see another discussion here about some people having their feet get symptoms before their hands, but I guess we are in the minority. Also like you, I noticed the stiffness in the evenings after sitting on the couch before the a.m. stiffness.

I hope your appointment goes well. Thanks for your kind thoughts.
 
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Cutterwatson replied to xperky's response:
I came across your comments while searching for RA info. I am suffering two years into an RA & Fibro diagnosis. You both sound so much like me. My feet hurt....all the time my feet hurt. Morning is the worst and after sitting I am stiff. I have a few complicating health factors as well as RA & Fibro so treatment can be tricky. I take Methotrexate and Plaquenil. I am at this moment in a flare and am exhausted. My questions to you are this; Do you take pain meds and if so what works for you? Also, how are you dealing with a disease that can't be seen? I am asked to go far above and beyond my physical limitations as some forget I am ill and I am too proud to say no. I have a 7mo old son who I need to be healthy for.....I am moving onto my 3rd RA Dr in a week. I am exhausted....I am depressed....I feel sort of stranded. I try and try not to complain"026I have now reached my breaking point. Any diet or exercise advice? Anything?
 
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xperky replied to Cutterwatson's response:
Hi Cutterwatson.

I hope you are feeling better today. It's so easy to get depressed when we get worn down. It does sound like you could use a few restful days, if you can grab them having a 7mo old!

For my pain, I have found Tramadol very helpful, along with my daily NSAID. I also use Lidoderm patches at night during the worst flares. Voltaren Gel helps me as well. I asked my doctor about the topical treatments after reading about people liking them in the Fibromyalgia Support Group. I hope at least one of these remedies helps you.

It's hard to say "no" to others when they ask for our help. We hear them say how good we look, but they can't see how tired and achy we feel. My husband is realizing how my hands hurt by seeing how difficult it is to open things or hold heavy items for long. He is now offering to do these things as he sees me reach for the item! I feel so disabled sometimes. ugh.
 
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Cutterwatson replied to xperky's response:
Thanks for your reply! This is the first time I have reached out to other RA patients and I was happy to get your input. I have tried Tramadol but found it is contraindicated to Pristique, a drug I take for muscle tremors and Fibro. I have tried Tramadol in extended release pills as well but never seemed to feel anything. I do have a giant 7 month old son. He is 21lbs. Carrying him , especially upstairs, can be my greatest challenge. I don't want to fall and it's painfull to hold him. Unfortunately for you, my favorite part of your comment above was when you said you feel so disabled.......sick, I know.....but it makes me feel less alone. I DO feel disabled and alone and I don't know how to get thru this stage. I'm always questioning myself, my thoughts and my abilities. Letting go of "normal" is a challenge. Your husband sounds great! How wonderful to have someone so thoughtful. He must love you a lot!!! Don't get discouraged.......you are in great hands!
 
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xperky replied to Cutterwatson's response:
Hi again, Cutterwatson.

Have you ever tried putting your son in a sling around you? Sounds like you could use one!

Today was my hubby's birthday. I got tired cooking extra, etc. but he seems kind of happy, so I guess it was worth it. I plan on taking things easier tomorrow. Tonight every joint in my hands is sensitive to pressure...hate that.

Thanks for your encouragement. I'm sure you are questioning yourself more than you need to. This diagnosis can make us feel 'not quite whole' and I have also lost some self esteem. So, keep pugging on and you'll get through this stage somehow.
 
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An_247885 replied to xperky's response:
I just can't believe how suddenly an active, healthy person can feel weak, tired, pressure, pain, depression, etc....and have no reason to explain it. Self esteem has never been an issue for me and now, with medication weight gain and my lowered physical abilities...I understand. Also, I have a sling....I have several slings and a Mobi wrap. They are fantastic! My limitation is, I am 5'4" and broken and my son is an active 21lb (extraordinarily tall) baby. It's like wrestling a lion with him sometimes. We have stairs.....we r planning to get a one story home within the next year or so. I have a few other medical conditions which impede my physical abilities. Within the last year I had my shoulder reconstructed, hand surgery, an angiogram, twice I had facet injections in my spine, plus more. I pride myself in my physical, mental and emotional strength......I feel that defeat. Rough year I guess. Wednesday I am going into the knee dr to consult a replacement......this would be the 8th surgery on my left leg. I am not old enough to have this surgery and am researching alternatives. I will wear out a replacement in a week with my kid!!! Lastly, I understand your stiffness you said you had after cooking. How is it we have to pay for attempting and completing fairly normal tasks? Today I am looking to get paraffin for a hand "bath". One of my best friends is a massage therapist and gave me it to use. It is small and inexpensive and they can be purchased fairly easily. I am excited to use it as it was once used at my physical therapy appointments and it feels so good! I guess if I use it daily I can find great relief and I can't wait to share the good new of its success, which I WILL do!!! Please take care of yourself and relax!!! Have some leftover cake and wish your husband a happy belated birthday!!
 
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dewd1959 responded:
I also have arthiritis and Fibro. and the very worse thing for it is to lay in bed or just lay around. Do not pamper yourself. You need to keep moving. get up and start exercising. Start out slow and work your way up. Sometimes I feel so fatigued it is unreal and my legs and body also feel likes yours but I refuse to give in to it. that is the best advice I can give you. if you are taking a medication that is making you sleepy and tired get off of it and try something different.
 
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Cutterwatson replied to dewd1959's response:
I would agree, however, depending on your condition , exercise can be detrimental or devistating. I decided to walk to the grocery store with my family instead of our usual nightly walk.....maybe 2 miles round trip.....I now can barely walk to the front door from the driveway b/c that gentle stroll blew out my knee just by walking....something we enjoyed doing together every evening. I will agree light exercise is great great great but check with your dr and ask what routine would be best for you! ask about non-impact workouts, amounts of time for each exercise, etc....i never stop moving and I pay for it sometimes. Rest is essential with RA especially!!! Know your body......feed your body, push your body......but be safe!!!
 
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mainelady10 replied to Cutterwatson's response:
I agree. I am getting so confused. I go to the RA dr. This dr told me I have a mild case of RA and continue taking plaquenil. So I have a really bad flare go back and she says it is fibro. Says i don't have RA but continue with the plaquenil. Had my feet and hands xray and it shows osteo arthritis. Has anyone else had this problem with Drs. You either have something or you don't. I guess I will keep doing what I am doing. Any shared info would be appreciated Thank you so much I get so much info from this site.
 
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Cutterwatson replied to mainelady10's response:
Mainelady10, that's how it generally goes. I live in the central valley of California.....my General Practitioner diagnosed me with RA, my 1st RA dr said "no".....My 2nd RA dr said "no" but let's do more tests. Doing more blood tests showed me in the 98 percentile for RA.....he was thrown and shocked by the results. I am on Plaquenil, indocin and Methetrexate and have been for two years. I do not feel this dr is understanding the depth of the pain I am feeling and would cry in his office describing it. (I am NOT a cryer) So what was his idea.....tell me I have Fibro, what I call a scape goat. I have had multiple joint surgeries and those, oddly enough, are the pressure point areas to diagnose Fibro. Of course I will be sensitive if you push on areas I have had surgeries on! Finally, a new RA dr has come to town who I will see next Friday. I am pumped!! I want to discuss Embrel and other meds and get away from Methetrexate and Plaquenil which r not effective for me. Mainelady, I once read, the key to living with RA is to find dr's who are on your team. Not ones who don't listen, not ones who medicate you into a zombie but one that cares, listens and who works WiTH you and your other dr's to help provide you with the best quality of life possible. They work for you....they WILL slow down to listen to you or find a dr who will. This is your life and your life affects those around you. They tend to run in, run out and you're left more confused than when you came in. I might suggest taking a family member or friend with you to your appointments. Multiple people tend to slow dr's down. I take ery vocal, inquisitive friends with me. I love taking people from the medical field who are not intimidated by dr's and their jargon. Not all dr's are this way. It I have spent a lifetime dealing with them and always try to remember......they r just human too. What if I were their mother or spouse. I , many times have asked...."how would you feel " if you live in Central California, let me know, I'll go with you!! You're going to be fine. I invite you to take a deep breath.
 
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mainelady10 replied to Cutterwatson's response:
HI Cutterwatson, Thank you for ressponding. My last visit to the dr they xxrayed my feet and hands
they don't see any RA but do see osteoarthritis. Now mind you this dr is a RA dr. but she doesn't treat fibro. My husband asked her what about the pain. Take tylenol as my stomach is sensitive to advil and the others. So now i am getting a new pcp and I'll see what they say. I think all these dr rely too much on test results and not on the symptoms. I go to Florida in the winter and everyone asks do you feel better there and I don't The pain is the pain. Not affected by the weather. Well for now i will keep doing what i am doing. I hope that you get results with your new dr. Take it one day at a time. God Bless


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