# Is this really FM ? Need advice



## jobabe56 (Nov 30, 2000)

Hi, I'm new to this FM stuff. My Rheumy thinks I may have it. Up till now they thought it was arthritis but it's getting worse and the meds aren't working as well. So I guess he thinks I have this as well as Psoriatic arthritis,IBS-D,psoriasis and constant neck and shoulder pain that they don't know what it is. So far none of the meds tryed for the neck pain has worked. The meds I take are Vioxx,Lotronex,Methotrexate,Klonapin and Utram.This is a new docter to me, and he just told me to come home, after working a 9 hour day in a factory on my feet all day, and exercise 30 minutes. I know it would probably help but I'm so tired I don't even fix supper anymore most nights I do well to eat a bite and bathe then I'm ready for bed. So what do you think? FM? Any helpful suggestions would be helpful. Are there any specific tests to actually show you have FM?I'd also appreciate any advice on other meds that might help as these aren't doing so well with the exception of vioxx and lotro Thanks, Jo [This message has been edited by jobabe56 (edited 01-11-2001).]


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## weener (Aug 15, 2000)

Hi there Jobabe and welcome to our group. Im not familiar with the meds your taking are they pain relievers? How are you sleeping at night? For the pain I find that stretching exercises and a good massage helps. I know that massage can get costly, so I tend to do the stretching on a daily basis until I can see my masseuse. I haven't really found any pain meds that work on me except the narcotics and I wouldn't recommend them. Taking warm baths before bedtime is a good idea. A good friend of mine just started on a regime of magnesium, zinc, calcium, vitamin D and multivitamin along with Celexa (anti-depressant) and she feels wonderful. I know that my rheumy also said that exercise that gets the heartrate up is good. Walking, riding a bike. As for tests to diagnose fm I don't think there is one. The doctor usually presses on certain trigger points on the body and if you have pain in 11 of trigger points you will probably be diagnosed with fm. When you get a chance take a look at the post Debbielee posted today "FM in the News". It is a very good article by a rheumatologist. We understand what you are going through and please know that we are here for you. Keep in touch.


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## Debbielee (Jun 14, 2000)

Hi and Welcome,methotrexate---for arthritis as well as a form of chemo for some cancer pts. Hard on the heart with many years of use but effective for arthritis. Vioxx--new arthritis pain med. Lotronex--for IBS--i thought that the fda banned it.Klonapin---anti--anxiety (benzodiazphene).Ultram---anti--depressent--pain med.Jo---if your rheumy has not dont the 18 point pressure test to see if you have fm then i am surprised or maybe he is not a believer in the condition or perhaps do to your arthritis it is difficult to tell.FM generally does not cause swelling as arthritis does. The meds you take for arthritus probally wont help fm as anti--inflamitory grugs usally dont.Klonapin does help and is a common fm drug.Some do well with amitriptaline or celebrex.Like weener said---the only thing for me that works during a flare up is a narcotic--which i dont like but unlike weener i will take if i have to. The best thing for me so far is to try not to over do and start it in the first place but sometimes it is there anyway.Are they sure your neck and shoulder pain is not arthritis?Take care and keep in touch.Debbie


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## jobabe56 (Nov 30, 2000)

Thanks to you both.I think I will have the doc do the point check. He only suggested I may have fm, gave me the brochure,told me to exercise 30 minutes daily, upped my vioxx to 50mg,told me to come back in 2 months and sent me on my way. I wasn't impressed after reading the brochure and he had not done the check. Also ,I don't have any problem sleeping which is why I question whether I actually do have fm. I've had the arthritis for 10 years or so and this is the first time fm has been mentioned. By the way I'm 44.I think they are just trying to figure out the constant neck and shoulder pain. As for the meds you are right Debbie, except I didn't know about the connection to the heart and metho,I do know it can be toxic to the liver.It is a disease modifying drug for the arthritis and I have to have liver biopsys done every 2 years.I've been on it for 6 years now. What narcotic do you take for the bad times? I'm thinking of trying valium as it is used for musle spasms and ibs sometimes.As for the klonapin I think I'm developing an immunity to it or the dosage needs raised.Of course I wouldn't need it if I went to valium but I think it is safer.Yes you are right about lotronex being banned but I still have quite a supply so I will take it as long as I have it.It has been a miracle for my ibs-d. Speaking of ibs- don't most people with fm have it?Sorry for being so long winded and thanks for the help. Jo


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## Debbielee (Jun 14, 2000)

Hi Jo,Yes IBS does seem to go along with FM--i have ibs--have had for 20 plus years--i am 48--just dx with FM.My good friend who has severe arthritis has been on metho. for years--she had a heart attack and they said it was due to the metho and predisone.klonapin and valium are both benzodiazphenes sp?----I think klonapin is better. but valium does work for spasms. Klonapin dosage can be safly raised--how much are you on now?I was recently just put on it cause of the sleep disturbance and restles leg syndrome---you may not have the sleep problem because you are taking this. Klonapin is longer acting than valium.Is your pain just in your neck and shoulders? You could have another condition called fibromylagia --again i cant spell--but it is simuliar but it is more localized and easier to treat---where FM is all over and on both sides of the body.I dont have much confidence in your rhuemy if that was how he basically blew you off.I take oxycodone for the bad times--better known as percocet.How do you do with the ultram? When did this pain start? Keep me postedDebbie


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## mamamia (Jan 21, 2000)

Hi Jo,I have FM along with IBS-D, I also have had fusion in my neck, and arthritis has settled there as well. I'll be 47 on Monday.I take Neurontin for the chronic pain from the FM mostly. It' a prescription drug given for seizures mostly but it works on chronic pain. I'd be useless without it.I also take Caltrate for the IBS-D.I also take Tylenol PM, about 5 nights a week, and that is really helpful too.I agree about the exercise being "easy to say" and "hard to do" but stretching seems to really help, especially with my neck and shoulder pain. Anything aerobic though, and I feel like I am being electrocuted.Hope this helps. Feel better.love to all, mama-PS Weener, please use the term "massage therapist." We MT's have enough trouble with getting validation in our field!!!!!!! Thanx! love, m-


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## weener (Aug 15, 2000)

Mamamia you are a massage therapist? Gee I wish I lived closer. How do find massaging with the fm? My massage therapist actually told me that the term "masseuse" or "masseur" is no longer used and I completely forgot all about it. I didn't mean to offend , it's just that the old brain doesn't want to work sometimes.


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## jobabe56 (Nov 30, 2000)

Hi all, Debbie, to answer some of your ???The ultram doesn't do much maybe a little, I thought it was just a non-narcotic pain reliever. Is it an anti- depressant?Your friend with the heart attack, I wonder if it could have been the predisone or the mix with metho. I have never taken pred. As far as I know the major problem with metho is the liver.So far ,no problems there. When I said FM, I was referring to fibromyalgia is there a difference? Celebrex is an NSAID similar to vioxx it was not effective for me. I believe amitriptyline is an anti-depressant. Correct me if I'm wrong on any of these,I like to know a little about meds before I go to doc. Yes they are fairly certain the neck and shoulder pain is not arthritis and it's not the same sort of pain. They have done x-rays and I've been to physical therapy so I have stretches to do for that which helps for a bit. This is when I started taking the klonapin,my regular md presribed it thinking it was muscle spasms due to tension and stress. I take .5 mg twice daily. What do you think about that dosage? Is this a fairly safe med? I had mentioned valium because I thought it was the same type drug only stronger. But then I'm not really familiar with either that much. Yes aside from the arthritis pain which the vioxx is taking care of the pain is limited to the neck/shoulders. Did you say you had ibs-d? If so what are you doing for it? I know a lot of people take different anti-depressents for it also.When my lotronex runs out I'll be looking for something.Mamamia,I tryed the caltrate with no luck maybe I should have gave more time, you think? What is Neuontin? I mean what type of drug is it? Does anyone have a good sight to check all these meds out at? Anyway Debbie let me know about that dosage on klonapin could be I could just raise it and get relief because it did help a lot in the beginning. Thank you all for all the help,feeling better already knowing I 'm not just some crazy hyprocondriac. Bye, Jo


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## Debbielee (Jun 14, 2000)

Hi Jo,FM is fibromyalgia--i mispoke--i was referring to myofascia --which is more like you describe. Pain in certain muscle groups. It is suppose to be easier to treat than FM--it involves excercise to loosen the muscles and bringing more o2 to the area. It is not uncommon for people with FM to have this also--in fact i have had this with my shoulder for years--for me ice actually helped. But i cant say in your case.I think your right regarding my friend--it was the combination of metho and predizone.The dosage of your klonapin is standard and is what i was prescribed--although i only take one for now. I know this can be increased but not without asking your Dr. first. What do i do for my ibs? Well i did nothing but live with it for years---didnt even no i could get anything for it. I was anti Dr. for a long time and just delt with it myself.Diet was my control---actually got into the bad habit of not eating all day till i got home--thus i wouldnt have to worry about having to find a BR.Then about 10 years ago i was treated for h-pylori (stomach bacteria that can cause ulcers) My ibs actually seemed to go into remission for about 5 years. I would still have loose stools but not every time i ate something. Then in 1995 i ended up in the hosp. with extreme pain and it was discovered i had Diverticulitis. It wasnt till then that i had even heard of the term IBS--before i had been told spastic colon etc... Then the ibs returned and now i have to distinguish when the pain is ibs or diverticulitis (which can be very serious).This is what i do now---diet---water---fiber.With the Diver. i have had to eliminate many foods. Any food that triggers i dont eat. I will not take anything for the D as the risk of constipation with Diver. is to dangerous.Actually it seems to have settled--if i have an attack (for me the pain is worse than before becasue of the Diver.) i go on a liquid diet to rest the colon.I have been given bentyl but i only took it once--i dont like it but i will say it worked. I would only use it now for extreme cramping. That is actually how i came to this board--i was looking for a msg board for Diver. and found the ibs board. Then 6 months ago i was diagnosed with Lymes that has left me with FM. I dont even no if the Lyme is gone--so there you have it.As for web site for RX--i just go to www.yahoo.com and click on medicine--it will take you to any drug you want to no about.Take care Debbie


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