I'm new here and could use some advice

Discussion in 'Fibromyalgia Main Forum' started by Pattim1107, Oct 4, 2005.

  1. Pattim1107

    Pattim1107 New Member

    Hi, my name is Patti and although I have not officially been diagnosed with fibromyalgia, I'm about 90% sure I have it. I've been reading some of the messages here and obviously you've all been comminicating and living with this illness for a long time and know a lot more about it than I do. I have read that the symptoms do not get worse, but I am wondering if that is true based on your experiences.

    I'd like to share my experience and get some input from anyone who may have suffered similar types of symptoms. I have had fairly mild, but bothersome aches and pains for years, including morning stiffness and feeling tired almost all the time, but assumed it was part of getting older (I'll be turning 50 soon). I was recently tested for Lyme disease - after I found out my dog had it, I wondered if I could too, but it was negative.

    I've also had constipation problems since I was a kid, although in recent years I had had less problems, I think because my diet has improved, I am drinking more water and I have been trying to exercise more regularly (just 10-15 mintues of gentle stretching exercises at a night, but better than nothing!), although in recent years I have also developed a lot of gas and bloating and occasional abdominal pain (IBS with consitpation, self-diagnosed).

    I also have bad varicose veins which began with my first pregnancy and got worse with the second, including a very large painful one in my private area which tended to be really painful during my period and has bothered me a lot less since menopause, I've also had pain at the base of my spine for years, which I'm pretty sure is sciatica (when it acts up, I get shooting pains down my leg). The veins and the sciatica both get worse when I am constipated, I'm sure because of the pressure being put on those areas.

    Up until this past weekend, all of these problems were manageable. For the past couple of weeks I have been constipated and my veins and spine have been killing me. I was trying to cure the problem with diet (lots of water, fruits, fiber, even stool softeners) , but nothing was really working (I was having a couple very small movements per day, but still felt all the pressure. As last week wore on, my legs started hurting more and more, including feeling very sensitive and almost like I had a rash on the backs of the tops of my thighs. Friday night I finally took a couple Exlax and did manage to go to the bathroom (even very watery movements) on Saturday, but in the meantime, I began to ache all over my body, feeling as though I had a fever, but when I checked, I did not. Since then, I have been taking pain killers, which have helped, but the pain returns once they wear off.

    I went to a walk in clinic on Sunday and when I described my symptoms, the doctor said she could not diagnose fibro (she mentioned it first, not me, although I had that morning done research on the internet and knew I had all the symptoms). She said I need to follow up with my primary care doctor and he would need to do lots of tests to make the diagnosis. I have an appointment set up for the 29th with a new doctor for a check-up, so will see then what he has to say. In the meantime, she suggested ibupofren rather that the Tylenol I was taking and that has been helping, but I hate to have to take pain killers all the time to be able to function. And with a full time job (I am the primarly breadwinner), 2 kids, a dog, a house to take care of and a husband with epilepsy who cannot drive and has various other health problems of his own, I MUST function!

    Now, my constipation is back (no movements since Sunday) my veins and spine are killing me and every time I let the ibupofren wear off, the body aches come back and this is all driving me crazy!

    So, my questions are:

    1. Has anyone else experienced the array of symptoms I have who can give me some advice about what medications will work for some or all and not make any of the other conditions I have even worse?

    2. Is it normal to have mild fibro symptoms for years and then have them become much worse over the course of a week (possibly tirggered by the constipation)? And will they stay this bad permanently? Please say no! Even more importantly, will they get even worse? I have read that symptoms wax and wane and that they don't get worse over time, but mine seem to have gotten much worse!

    3. Does anyone have advice about how to deal with the constipation?

    4. If the ibupofren works, but the pain comes back, can I just continue to take it all the time? The doctor said to use it for 5-7 days, but what do I do after that if the pain is still there?

    5. Will the ibupofren stop working? Again please say no!

    6. Someone referred to being "cured". Can you really be cured of firbro?

    Sorry this is so long, but I hope at least some people have read it all and will give me any advice they can. Thanks so much,

    Patti
  2. dakotasweett

    dakotasweett New Member

    I am also relatively new here...and I have had nothing but very nice experiences with other members. I don't know that I can answer all of your questions (definetly ask these of your doctor as well). But I will try to provide what insight I have.

    First of all, you must realize that what medications work for one person will not necessarily work for another person. I have personally tried a long list of anti-depressants, muscle relaxants, narcotics, OTCs, etc. etc. and not found any relief...but there are other people on here who have found much relief from different remedies. Often you have to try different things until you find the right thing for you.

    My symptoms and those of several other people with Fibro I have spoken with all have a waxing and waning of symptoms. Mine never go away totally, but I do have some days that are better than others. I do believe the frequency and intensity of my problems have gotten worse since being diagnosed 6 years ago. But again, everybody is different. As far as how quickly things progressed, it is possible that there is something unrelated going on- so I definetly advise speaking with a doc. On the other hand, I have flare ups of very bad pain that come on very quickly.

    There are many things you can do about the constipation. I believe you should try the simplest and safest method first, so first make sure you have enough fiber in your diet and use supplemental sources if need be. You DO NOT want to habitually use laxatives as you can become dependant on them (because your intestines lose their capability to move things along and your rectal muscles lose their ability to control bowel movements). If you continue to have these issues with constipation speak with a doc or try some herbal remedies on occasion.

    The problem with ibuprofen and other OTCs is that they can be very hard on your system. Ibuprofen can cause severe stomach issues (including bleeding) with long term use. You must cautiously use all medications (even OTCs) and make sure your doctor knows how much and how often you take them.

    Make sure to try non-medicinal methods of dealing with the pain...deep breathing, meditation, hot baths, muscle rubs, etc. It may help a little, a lot, or not at all...but it is worth a shot.

    Some people can develop a tolerance to medications they use too often. This is exactly why I don't take anything unless I am in severe, unrelenting pain. You can end up needing more and more to acheive the same results.

    Finally, all the research I have completed has stated there is no "cure" to Fibro. There are methods of controlling it (again, they are different for everyone), but there is no absolute cure.

    Well, I think this was a pretty long response, but I hope it helps.

    Soft hugs,
    Vanessa
  3. 69mach1

    69mach1 New Member

    for you ahead and can be very frustrating. so in the mean time it will be trial by error on meds. what may give some relief to one won't to another.

    i have had it for years and i didn't even know my own mother had it but she said hers isn't as bad as mine i have it all over my body and stress. and all the things that go with it. i have avoided at times even goint to the dr's cause i thought they would think i was a hypocondriac. but when i would go in i had xrays or mri's t back it up. so that is sorta nice in a way, but as for the fibro i didn't know the name until i had aleast three different docotors diagnose me with it.


    so my advice is to follow through with the docotor and do what they say. as you know there are trigger points on the body and that will help them diagnose you. and the big quesiotn is do you have insonmia? i had an anthisiologist that specialized in a chroni pain clini in denver tell me that is the first question they will ask and then they will go from there. read my bio you will find out the things that are wrong w/me and i am still working on trying to get alife again.

    i just was told i won my ssdi tonight on the 1800# a the intial phase.

    does your husband get ssdi or ssi because of his epilepsy? just wondered about his medical insurance if you go on ssdi. sounded like maybe you carried the insurance. well sorry to not really answer alot of your questions. but i think your doctor will be able to advise you better on what is going on with you.

    just hang in there
  4. Pattim1107

    Pattim1107 New Member

    Thank you all so much for your replies. I will certainly try some of the suggestions I received. What is Threelac and where and how do I get it? I've seen it mentioned in other posts, but am not sure if it is an herb or a prescription medication. I have tried to get the constipation under control with my diet, but that does not seem to be working. I got some carberra (I think that's what it's called) last night and took one last night and another this morning (as well as drinking prune juice, taking a stool softener and eating All Bran and blueberries for breakfast) and did go a tiny bit this morning. I think I may have made the problem worse by starting to take Metamucil once a day. It was making me more regular but then I got worried about becoming dependant on it, so stopped for a day, then finished the store brand I was taking and started taking the name brand and the constipation seemed to get worse, so I stopped and tried to just drink lots of water and eat lots of fruits and veggies, but that has not worked. I'm going away next weekend for a reunion with friends I lived with in NY many years ago and hubby and I have a trip planned to Disney World in November, and I am terrified of being in pain and miserable all the time on both trips! I'm already winding up taking the ibupofren at least 3 times a day to keep the pain down enough to work and am worried I will become immune to it before these trips.

    Someone asked about insomnia. Although I sometimes wake up around 2 am and have trouble getting back to sleep, I usually fall asleep almost immediately (I'm so exhausted) and sleeping is the only time I feel real relief from all the achiness (although when the ibupofren wears off, I do wake up early in pain). If this means I don't have fribro, what else could it be? I also have been having bad headaches along with the all over body aches and the soles of my feet feel very sensitive and sometimes burn. I think I've read these are also symptoms of fibro.

    Thanks again for all your support!

    Patti
  5. chp1298

    chp1298 New Member

    I have had vericose veins since I was a teenager. They just got worse and worse with each pregnancy and pund I gained. My right leg ached and burned and just hurt. Lat December I had a procedure to remove them.It was outpatient and painless. The next day I was sore and bruised but able to do anything I wanted. The worst part was having to stay bandaged and in a tight stocking for a week. This was a very easy painless procedure and I am so happy I had it. My legs never hurt anymore and the scars have totally disappeared.
  6. Pattim1107

    Pattim1107 New Member

    Thanks, I have been considering looking into surgery for the veins, but am worried my insurance will not cover it. Did yours and if so, did they give you a hard time about it?
  7. MamaDove

    MamaDove New Member

    Welcome to our community!

    I am having a MAJOR flare this am and the more I wrote, the less you will understand me...I just had to comment on some things in your message...

    BE VERY CAREFUL with the Ibuprofen!!! I took it after neck surgery and continued to take it longer and higher doses (doc's recommendation of course) and I now suffer from Ulcerative Colitis, without a doubt brought on by this drug! After 10 years I still battle the UC and have been anti-drug since...I suffer constantly on a daily basis and now it seems when I put just vitamins in my mouth, I get the urge to hurl...Sorry for the graphic, but I would rather you NOT have to deal with the added nightmare of IBD.

    More importantly, I feel for you in regard to your husband.
    My husband had his first seizure almost a year after we met.I have done everything to "protect" him and to make his life easier...Dealing with epilepsy has been the most stressful and scariest thing in my life!!! It has eaten my insides up since day one! I am thankful that we are together and even though I have a short fuse, mainly because of his illness, to compound it with mine, no wonder I feel like I am living on the edge...
    I too, felt like I MUST keep going...Opened a pet grooming business next to my home so I can be there 24/7, always putting everyone else first and KILLING myself in the process...We will be together 20 years next month and although I wouldn't trade it for anything, I would try to change my mindset on how I dealt with his illness (the MONSTER, I call it)...

    I am wishing for you, more strength and alot of LOVE, the only thing worth all of this pain you are going through...

    Try to find time for YOU!!! I know it's hard, I still haven't learned how to yet...Know that there are many people here that care and want to help you...Read my profile when you have time, it's my life as condensed as I could get it while still trying to convey what I have been through...

    I'm glad you found this place, I will look for your posts,

    Blessings, Alicia
  8. Fudge43

    Fudge43 New Member

    Patti ... I'm sorry this is all ahppening to you ... I wanted to drop a line and say be aware of the varicose vein .. I had one since I was preteen.. heriditary ? .. in any case .. this Spring I managed to form a blood clot in it by straining in the garden .. trying to pull out some nesting spruce .. I suffered for days till I went to emergency ( my husband convinced me ) and they found the clot by ultra sound .. since it wasn't a "deep vein " one I was told to elevate .. rest .. take anti-inflamitories ( my spelling sucks ) .. the point I'm trying to make is be careful about straining of any kind .. I was shocked when it happened to me .. and tried to ignore it .. so please be careful and watch for extra pain and difficulties with it !
    Good Luck
    Fudge !
  9. Pattim1107

    Pattim1107 New Member

    Thanks Alicia. I am worried too about the ibupofren, but need some relief from the pain. I am not taking it in the doses the doctor recommmended, I'm just taking the minimum amount I can to get by, but am afraid even that will too much if I continue it long term. Would love to hear more about your husband's epilepsy. My hubby's can be bothersome, but he only has temporal lobe seizures and loses consciousness for a minute or less(but then has a period of confusion for several minutes after). The biggest problem with it for us is that he can't drive (he does work full time) and if he has a seizure when we are out it can be difficult to control his behavior (he wants to go lie down somwhere). He also has anxiety, depression and OCD and is on medication for all those, so for me to now have to deal with a difficult illness that will possibly require much testing, and trying different meds/therapy, etc. is not a good thing!

    Patti
  10. chp1298

    chp1298 New Member

    Patti.
    My insurance which is Cigna preapproved and pd for all but my copay $125.It was well worth it. They advertise that you can go back to work the next day but I do think that is pushing it a bit. I needed to reat a little more and prop up but I walked a lot that day. They want youto keep moving. Of all the procedures and tests I have had this was by far the easiest and easiest recovery. You have to wear a support stocking for a few weeks but that is not a big deal.
  11. MamaDove

    MamaDove New Member

    And they are awful for him as well as the person viewing it, always been me...
    He began having them in the military...The first one he had was on the Tamaroa (the ship in the movie Perfect Storm), they brought him to the hospital and after minimal time and testing, sent him back to work...He has never been the same since...His neurologist in NY demanded the records from the USCG to make sure he was taking the right steps in his treatment but was told "he never served in the Coast Guard".That doc did all he could for my husband, prescribed him meds that made his life more miserable...He stopped the drugs and even though he has researched and tried differnet things, we share the same concerns about meds and he has chosen to forego conventional treatment...
    We know this much, he has an abnormality in his left frontal lobe and the notes that I take do confirm that in the past when he has ingested alcohol, MSG and PECTIN, he has had seizures...Not every time, but it is a common trigger...He has avoided these things since 2000 but continues to have seizures...
    My lil boy (chocolate lab) also had the same problem, they learned alot from eachother and I learned more about his DD than I ever would have otherwise...Make a long sad story short, I lost my boy in April, from the seizures and now have to go on grieving...The suffering doesn't seem to end...
    Back to the hubby...He stopped working in 2000, see docs at the VA, which just push pills as a solution for the problem that they determine is Adult Onset Epilepsy with no cause or cure and only his PCP at the VA has the least bit of compassion for his situation (and mine)...She saw how devastated I was at our first meeting and demanded my husband apply for full disability...Thanks to her, he got it...
    I believe he also suffers from PTSD from the Coast Guard, still has nightmares and sleep issues and tries just to be positive and accomplishing something in a day...He cannot socialize well, has memory and concentration issues (we are a hoot together, at times, we can't remember anything or we complete eachother's thoughts)
    Oh boy, I am off and running again...Seems I have been through so much that I sometimes need to get it out and this is where I do it...Cheaper than a Psyche, that's for sure!
    I am happy that you are able to plan vacations, we haven't gone anywhere in 10 years...His illness, my DD along with having three labs, one that was sick...I gladly sacrifice for my family but it can lead to alot of resentment, just learn to live with it...
    It sounds like others have addressed some of your concerns and I hope you can find your way to better health...Keep posting, you will get lots of help from everyone...
    Have a Great Day Patti!
    ~Alicia
  12. Pattim1107

    Pattim1107 New Member

    I'm so sorry. Makes my hubby's problems seem pretty mild! He has had grand mals in the past, but I think his medication (Tegretol seems to work best and have the least side effects although he has tried many) keeps him from having those and cuts down on the others. We still think there are food triggers, but cannot really identify exactly what they are as some foods seem to cause them at times but not at other times and his neurologist doesn't believe it has anything to do with food. Has you hubby tried the ketogenic diet? Mine never has, but he does the Atkins diet sometimes (for weight loss) which is similar to the ketogenic diet and he does seem to have less seizures when he is doing it.