Hi this is my second time posting. It has been a while since my first one.
I don't understand FM. I was diagnosed with FM about 6 wks ago but went to another Rheumy and she states it is RA. I don't have joint pain it is muscle pain. It moves from joint to joint depending on my activity. I went to a water park on Friday. We were there for about 5 hrs. I notice towards the end of the day the muscles by my wrists started to ache, The pain started once I got home. I took my bra off and my wrist were in excruciating pain. It feels like both of my wrist were severely sprained. I had to sleep with hand braces on because any movement hurt so bad. I don't understand why this happens. Last week it was my left jaw that hurt for 2 days. Why does this happen? Is this what everyone else experiences.? I was able to work at my left wrist and it does not hurt to much my right one is getting better but I have to where the brace if I need to do anything. Why does the pain jump from body part to body part.? 2 wks ago it was my left shoulder I couldn't move and before that is was my elbows and right knee. I don't have severe pain everyday except for my hips. They hurt most of the time but I can deal with that since my Rheumy gave me cortisone shots last week. Does anyone else have bursitis? I have it in both hips and in my right shoulder. Those areas don't stop hurting it's just a matter of how bad they hurt.
Also I was getting spasms in my feet eveytime I went down the water slides. Also my calves felt like they want to go into spasms but they didn't. Does anyone else get spasms in their feet?
Does anyone else have fibro and RA? The rheumy said my blood test show I have RA. My RF is 15 and the ccp is over 60. I am not symptomatic right now. This new rheumy won't give a diagnosis of FM. Every time I am active some body part hurts for 2 days. Is this normal for FM? Will I get worse? I afraid to do anything anymore. I am only 42. Sorry for all the questions. I am frustrated and I get depressed when this happens. It seems the rest of my life is going to be limitations and pain. Thanks for listening.
I wish I had answers. I wish I knew more about FMS. My aches and pains move around too. Mostly though it is in my middle and upper back, mostly on the left side. All my blood tests shown no RA, no Lupus, nothing really.
I do get leg and feet cramps. It seems to be more frequent at night.
Have the doctors offered any suggestions or treatment for you?
I want to say, "Do not get discouraged," but I know this crazy FMS thing can make a person depressed. Just keep talking and trying to think positive thoughts. I am thinking about you!
One question, have you recently started taking cholestral medicine? Several people that I know including myself had really bad muscle aches and spasms taking these kinds of medicines.
My feet are crapped alot of the time. I can't wear any kind of a dress show taller than a kitten heel. I miss wearing pumps. I use a golf ball all the time. I tell people that I feel like I'm walking on pebbles all the time.
I cannot do cold water anymore...........ever. I spasm all over and also get bladder spasms. Heated pools are fine.
I was very unhappy 15+ years ago when I had symptoms then by the time you get to the doctor you'd hurt somewhere else. I have problems with rheumy's because of what is happenning to you right now. Fibro pressure points are above the joints not in them. I was prescribed stuff like ultram, etc..........all the people that I know personally with fibro said they didn't work for them either and the gastric upset wasn't good. Fibro is not inflammatory, but myofascial disease and arthritis are. Myofascial disease is not the same as fibro although some doctors try to group it together. I have both F/M.
The reason that the pain jumps from place to place like that is because your brain and spinal cord are constantly sending out substance p. There's a disorder that for some reason keeps firing pain signals all the time at random. I am very up on the latest research, etc.. In Europe they are finding that the little hair-like things around cells called glia, or something like that, I don't want to did through my stuff right now to find it. Although if you'd like to know more about that I will find it for you. Also if you do happen to have the myofascial disease that's where the muscle aches come in, they cause nerve entrapment also. It's like for instance the bottom of your foot hurts, so you may baby that part walking maybe on the side of your foot, then that throws you off and effects your knees, then hips, etc....it's kind of a vicious cycle.
My family lives in the midwest, so after flying there and pushing myself for a couple of weeks, I get home and I'm down for a few days. The same when I have company that stays like that. They are very understanding, but it's very hard. My kids are all gone from home now and it's hard to keep house, I never get it all done at the same time. When I do get it all done, I'm down for 2 or 3 days.
Jaw pain can also make you feel like you've got a tooth ache when you don't. I lose may balance sometimes and fall to the left. Sometimes words are on the tip of my tongue, but I can't get the words out.
One of the things you can get is bladder spasms. Went to doctor, nothing showed up. So this went on for a year or so on and off and it got to be all the time........I had bladder cancer. So you're in a catch 22, do you go to the doctor when something hurts or do you pull up your big girl panties and get on with it.
See, you may have a spasm, but you also get referred pain to surrounding areas. Okay I'm getting this right of a book. Lets say you have trigger points in a hip. The referred pain from this will go to your fanny and run down the side of that leg all the way down to the ankle.
Type in Devin Starlanyl MD, you'll find alot of answers. I have her books, they answer everything from does the noise from flourescent lights drive you nuts to how to apply for disability. I've had this for over 15 years and hers is the best information source. I use it all the time when I can't figure out something or some place hurts so I look for diagrams to find the trigger points and try to break them up. Sometimes you think to yourself, I'm a spaz, but then you look in the books and go, wow, here it is. See she has both F/M too.
I turned 53 today. If you do indeed have these diseases then you will go through a grieving process and then hopefully you will accept it with dignity. Will it get worse? No one really knows. I hurt all over, but the biggest share of my pain is from the tailbone up. I've seen some people in wheelchairs and using canes. We are all similar, but not at the same time.
I have also found that when you go to these doctors and I call it armed with knowledge, they treat your differently. If I don't feel like a doctor is working as part of a team, then I'm out of there. Sometimes doctors seem intimidating, I do not get intimidated. The doctor works for you, just like if you hire a plumber. You know your body like no one else does. I've had a great primary care doctor and a great pain management doctor and now they are in the same building, what a plus!!!!!!!!!!! I love these guys.
Please cope with my spelling, etc., it's very hard to concentrate today. I hope I answered some of the questions alright for you.
Ann, Happy Birthday! It feels like we mourn sometimes for the loss of something, like the use of our feet for longer periods of time, like more than 2 hours. I have limitations now, and I have to keep an eye on myself all the time, and take advantage, but not too much of it, by using the time when I feel good wisely. I have fibro and myofascial and more. I am learning still, my battle started sept 4 2007, with a terrible tmjd flare-up that stayed, I still battle it today. I am not sure what is going to end up with my jaw, I have a splint now, but I do not see the damage to the condyles healing itself, or the dislocation fixing itself either.
I am 31, and I am a mess, not really, but sometimes it feels like it. I am trying to rebuild my life with illnesses, lego by lego (I have 2 small boys, 2 and 5, and I stay home with them), so legos are easy to think about and their connecting holes, and getting the right fit. I forgot about how to enjoy life, simple things like music, reading, and more. Everyday I try to take care of my family, the boys, my husband, and my pain. I wrote my husband last night at midnight and I wrote, I am so tired of pain. My marriage has not faired well with my illnesses, and I try my best to take the least amount.
Do you ever struggle with it being like 11:30 pm or later, your in pain, know that you are tired, feel exhausted, but can't sleep because of the pain in your arms and legs, and are tired of taking medication for the day, and end up taking breakthrough pain med or afternoon LA med, so you can stop the agonizing pain that just won't let you rest? I have been here lately more often than not, and I just want to go to sleep, the boys are asleep, but the pain is driving me crazy? Looking at it right now, I should have taken it at the first sign an hour ago, but I was hoping I would be asleep by now.
How do you days go, and how do your manage pain? I have recently gotten a couple of Dr. Starlanyl books from the library, and feel like I am going to arm myself with weapons of information, and education.
If you do not mind my asking, what brought on your fibro/myofascial? We all have our stories of how it started with each of us, mine was stress, migraines, and tmjd. Then the pain spread throughout my body.
Thank you for your time, and I hope you have a great day, a great birthday!
Last edited by gorgee; 07-27-2008 at 07:32 AM.
Thank you so much for your responses. I am trying not to get discouraged. It just gets so hard some days. I have been sick for several yrs now but it's from chronic sinusitis . I had sinus sugery last yr because for 2 yrs I kept getting sinus infections. Most antibiotics do not work on me anymore. The surgery did not do much I had 4 infection after the surgery. Thank God I have not had an infection since Feb of this yr.
I felt sick all the time but no fever. I thought it was just from the infections but now I think it was also the FM. I had several yrs of hip pain and my thighs feel like they are black and blue. My son would lean on my thigh and I would yell at him to get off because it would hurt. I never understood why that hurt until now. I am not sure if the chronic sinus infections caused the FM or the severe stress I was under in my job. I have been with this company for over 6 yrs and I was fairly healthy before I started there.
I am not on any medicine yet. When the rheumy told me it was RA I was in shock. I did not expect that. I go back to her in 12 wks. She did not say it was FM it was the 1st rheumy I saw that diagnosed me. She said I have symptoms of FM but it depended on the blood test and they showed RA. She suggest physical therapy but nothing else.
I get spasms when I am active. Only now and then do I get the cramps in my calf when I am sleeping. I get more spasms in my feet when I am in cold water. I doesn't happen all the time. I think that why I feel like I am crazy sometimes because most of my pains and spasm are not constant only the hip and thigh pain is constant.
Ann don't worry about your spelling. If it wasn't for the spell checker I would be in trouble. I am a terrible speller.
Why do you have to wait 12 weeks to go back to your rheumy? The doctor (rheumy) that mentioned the FMS was not your rheumy?
I know that it is overwhelming at times. I feel like I have lived at some doctor's office for the past 12 months. I have been poked and looked at (inside and out) so many times that I can't imagine going more than two weeks without another "test." I think one of the hardest parts for me is also the delay between visits. It is hard to sit around in constant pain worrying about what could be possibly wrong for a couple months when you KNOW the test results are back. Maybe you should call and request an earlier appointment????
I know what you mean about sometimes thinking you are going crazy. I feel the same way. My constant pain spot is in my back - left side about heart level but on my back as opposed to my chest. Sometimes I feel like there is some big mass in there pushing on everything. Of course, if I share that outloud, everyone says, "You have had 4 MRIs, a CT scan, and several xrays. There is nothing there!" I have learned to be more quiet about the hurts.
I hope you can get in to see your doctor earlier. Keep us posted on what you hear. There are people who really CARE on this health board. It helps to just have someone to talk to!
I'm new, but not new to fibro , or DDD .I feel so alone at times. I'm so tired of being sick and in pain all the time. The Dr. just started me on oxycotin 60 mg x3 and narco for my brack throu pain,cause i was only on narco untill it stoped working enough. Oxycotin scares me, is there anyone else out there that take this drugfor pain ? I also take Liycia 100 mg x3.
Last edited by HBMod07; 08-03-2008 at 04:46 PM.
Reason: Unecessary quote
I take o.c. for pain from tmjd, myofascial, and fibro. My dosage is 40 mg 2x daily. It really scared me too, but then I was in pain all the time, in the middle of the night, crying. One incident helped me make the decision, I woke up at 2 am and was in so much pain in my jaw, I was shaking, and in pain, crying to my husband. It was time for me to change my pain meds. I was taking vicoprofen 3-4 tablets every 4 to 6 hours, and it was not controlling the pain, and I was on a roller coaster of trying to keep on top of the pain, not let it get out of control, and if I did I was in trouble. I made the decision in February and I have been on it since. It gave me some of my life back, and it felt great not to have to treat the pain all the time. I still have to take the bt meds, but not like I used to.
There is so much stigma about o.c., but it is really a god-send to us. My doctor has said that narcotics do not help with nerve pain, but I do not know what else to take or do. I tried lyrica, and it made me swell too much. My doctor said I could try it again. My facial pain doctor has suggested neurontin, and I am thinking about it. I am so tired of pain.
Please do not let the bad opinions or stigma's keep you away from taking a long acting pain medication. It has helped so many of us.
Good luck, and welcome. This is a great place to be. We both have fibro, but maybe I am not thinking or maybe it is the fibro fog, but what is DDD?
Jan, welcome to the fibro boards. I know exactly what you are talking about when you say the pain in your thighs or legs. I feel like one big bruise, and if one of my kids plays around or bumps me, I hit the ceiling in pain. My neck, shoulders, lower back, and upper legs are the sorest to touch. The soaring pain is in my lower arms and lower legs, they ache and throb everyday. Do you feel that way too?
DDD is degenerative disk disease. I want to thank you Kass3176. Now i dont feel so worried. I am so glad i found this site cause I dont know anyone else that experainces this kind of pain. I hurt so bad at times, and I know my husband don't understand. So now i feel i have some people I can talk to.
I am currently taking tylelol with codeine (1/2 pill every night after work) and that seems to be helping some but not really.
My pain is mostly in my neck and shoulders but I have had an excruciating pain in my side (left stomach area) since December and I just can't get rid of it. I had an endoscopy in February and they only thing they found was gastrisis but from what I've read...that shouldn't be causing this much pain.
I am reading a really good book right now about Fibromyaligia and it talks about taking SAMe or DPLA (DL-Phenylalanine) for pain. Has anyone tried these? They are natural supplements.
Anne, does the book tell mor abour the bottom of your foot hurting. Cause my rumatalagist said i have swelling in my blood somewhere and he thinks this maybe RA or Lupus, but hes just watching my blood right now I have an appointment with him next week again. But the top and bottom of my feet just started hurting about amonth ago. Should I be concerned? I hurt all over, all the time so I really dont now the differance:( But this is differant.
I was supposed to go back in 6-8 wks to the rheumy but I could not get an appt that soon. it's a very busy office. I am off on Fridays so I only make dr appt on Fridays so I can save my paid days off for more fun things. I would like it to be sooner but what is she going to do. I have few symptoms for RA most are for FM. I not sure she agrees with the 1st Rheumy's diagnosis of FM. It seems like a waiting game for me. Every ache or pain I have in my joints I wonder if its the start of RA? Or is it FM
My thighs, butt and hips feel like a bruise and ache most of the time. Yesterday I laid on my carpeted floor to do stretches and my butt and hips feel like I have a bunch of lumps on my muscles it hurt. My Chiropractor has me doing stretch to help these areas. I also have bursitis in my hips. That gets very painful until the rheumy gave me cortisone shot in both hips. that has helped the pulsating pain in my hips. I also get burning and pinching feeling in that whole area too. My calf & my upper arms are starting to get the back and blue feeling too. It's not to bad right now
I hurt my neck about 10 yrs ago and have been on & off to the chiro. I re injured my neck a few yrs ago helping my son do his gymnastics. I go to the chiro pretty regularly now. I don't know if that is why I don't have much pain in my neck and upper back. I know if I don't go to get adjusted I do start to have pain.
My son is on neurontin for anxiety attacks but 3yrs ago he was on dirt bike with his friend and it some how fell on his foot and crush a vein in his foot. he was okay but was in pain for awhile. He was off the neurontin at that time. When went back on the neurontin his foot stops hurting. We believe he has some nerve damage to his foot. This has not been confirmed by a dr. but every time he goes off the medicine his foot hurts. It may be worth a try if you have nerve pain.