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I'm here again.... :( I'm here again.... :(

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Unread 10-01-2003, 06:41 AM
I'm here again.... :(

Hello girls!!

I've been gone most of the summer...we've done a lot and have had some major changes in our lives, and while I've been doing/dealing with things I've felt my body slowly get worse and worse. Hard to belive sometimes it's been 2 yrs since my original surgery and on Oct the 8th will be a year since my last one. Wish I could say I'm better.

I"ve been lurking I admit....I read hoping someone will come along with what I've been feeling and relate, But I haven't seen to many of my buds on the road lately with fibro and RA....so I came to hopefully dig ya'll out and pick your brains for ideas and suggestions!!!

First let me say I have a docs appt on the 7th....Don't know how I'm gonna pay for it but I have one. My first concern is what I experienced last week. DH keeps trying to convince me it was a bug but I think by now I know the diff ????

For 5 days I had the most excrutiating (sp) pain on my left side. Now this was something I have never gone thru with pain starting just under where my ribcage is in my back. This pain wrapped around my middle, generated all on the left side and went thru my bowels and into my left leg. I thought it was gas/constipation at first till it lasted so long. I couldn't move...It was bad enough to keep me on the couch all week. When I did have to do something I took my toradol and my ultram and got no relief. Can someone describe IBS for me? Or Diverticulitus? Does this sound like either one? I even thought major Kidney Infection...( I'm no lover of water or cranberry juice) as when the pain finally did let up ( dissapeared as suddenly as it came on) My urine was pretty dark Orange for a few days.

I"m in pretty bad shape physically.....My fibro seems to be getting worse and worse with more bad days than good ones. I don't hardley leave my house anymore....and I'm decidedly an unsocial B**. I ache all the time...my right hip consistently feels like it's going to pop out of place any time...I walk with a constant limp. The RA isn't helping I"m sure....I keep wishing they would come out with this giant body heating pad!!! I haven't found one yet. I still have the left sided pain where they took the ovarian remnant....so I'm chalking that up adhesions. Which makes me think that maybe some of the problems I was having last week adhesions contributed to the problem???

I know stress makes the fibro worse and I HAVE been having a lot of that...but sheesh girls how do you get relief? I've tried excerciseing...Started walking with my nieghbor but before we got 6 blocks my hip would hurt soooo bad I could barley make it back. I've called the pharmacy this am will be starting my Estratest again....I'm wondering if maybe the lack of testosterone for the past 3 months has something to do with all the acheing?

If you've made it this far in my post....God bless you...I know I could go on some more...there is just so much going on, but I'll never get ideas if it takes you two hours to read my post!!!

Love ya's
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Unread 10-01-2003, 06:59 AM
I'm here again.... :(

Hi Dawn

I'm sorry to hear you're still having so much trouble. I was gone for the summer as well and just getting back home and working at getting organized is depleting what energy I have left. To top it all off, my doctor dumped me and every other FM patient and there is a shortage of doctors where I am, so that's been like looking for a job. So stressful!! I finally found a 31 year old who will take me and what the heck does he know? Anyway, sorry, I digress . . .

I have no idea what your left sided pain is, but if it makes you feel any better, I am experiencing what sounds like similar pain. A Pain Management doctor sent me back to my Family Physician (who now refuses to see me) and said he thought it was a mechanical problem that needs surgical repair. Ultrasound shows nothing and I have an appointment with the surgeon next week. I'm going to try to get to the bottom of this, as it does interfere big time with my life. But I won't be surprised if there is no answer found.

As for the FM, it's this time of year that is one of the most difficult. Some people also have a hard time in the spring - these two transition times seem to be the most difficult. Personally, I find no medication helps the all over pain. Hot baths (while I am in them) help, deep relaxation, meditation and rest help some. After 25 years I've gotten used to it and just try to work around it. I know how frustrating it is and you can't help but feel down sometimes. Finding other people who are positive about life and understanding that you still have 24 hours to fill and just need to find different ways to fill those hours can help. It's a big readjustment and new perspective on life.

Hope you're out of the dumps soon. Don't try doing more than you can do but keep moving in some way. That's the best advice I've gotten. I stopped asking for help with the pain a long time ago. I can do better on my own than any medication ever did for me and that's not saying a whole lot!!

Best wishes coming your wan.
Unread 10-01-2003, 07:16 AM
I'm here again.... :(

I've been wondering where you were...I was soo hoping you werent around b/c you had finally found some relief! I'm soo sorry things have gotten worse

As you know, I suffer from severe Fibro (symptoms) as well:-( Despite all you read on how it isnt *progressive* I disagree..mine is worsening also!

I have a condition that my Pain Drs found last year, Hyper Mobility Syndrome. It causes me quite alot of pain in my hips. When I read your symptoms re:your hips, this is what I experience as well. I'm gonna list a few links w/info about it for you

Hyper mobility syndrome:

What is the Hypermobility Syndrome?

Connective tissue proteins such as collagen give the body its intrinsic toughness. When they are differently formed, the results are mainly felt in the "moving parts" - the joints, muscles, tendons, ligaments - which are laxer and more fragile than is the case for most people. The result is joint laxity with hypermobility and with it comes vulnerability to the effects of injury.
The Hypermobility Syndrome is said to exist when symptoms are produced, a state of affairs that may affect only a minority of hypermobile people. It is probably more correct to refer to Hypermobility Syndromes (in the plural) as a family of related genetically-based conditions which differ not only in the particular protein affected, but also in the degree of difference of formation. Thus at one end of the spectrum are the diseases with the potentially serious complications such as Marfan Syndrome or Ehlers-Danlos Syndrome Vascular Type (formally EDS IV). At the other end are what is now called on good evidence Benign Joint Hypermobility Syndrome (BJHS) and Ehlers-Danlos Hypermobile Type (formerly EDS III), which may be one and the same. These may cause troublesome and persistent problems, but do not affect the vital organs and thus do not pose a serious threat to life.

Dawn, this condition often gets mentioned when reading/hearing about FMS....seems to be more common among us
FMS sufferers
Here is a link I found discussing the 2 in relation:

About Fibromyalgia:
memory and concentration problems. - dizziness/problems with equilibrium. - difficulty in focusing the eyes at times. - chest pain. - hyper mobility in ...
Hypermobility Syndrome Association website:

What is the clicking that comes from my joints?

Many people click their joints but for hypermobile people it is a lot easier to do. That is because they are a lot easier to pull apart, especially the finger joints. What happens is that as the bones are distracted a vacuum is induced in the joint, which rapidly fills with gas (in this case it is nitrogen, dissolved in the tissue fluid). The same joint cannot be re-cracked for a few hours, the time it takes for the gas to be reabsorbed. Many people, like the questioner, do find that clicking does temporarily relieve stiffness in hypermobile joints. The trouble is that it tends to become a habit that becomes a little anti-social! Whether it does any long term damage is doubtful.
More FAQ's are here:
I wish I could be of more help....my own Rheumy is at a loss as to what other treatments to try. I've underwent just about every type of treatment known to alleviate the symptoms/pain. Good Luck my friend Pls know I'm always around !! Keep us posted....(((((((((hugs))))))))))))
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Unread 10-01-2003, 07:44 AM
I'm here again.... :(

{{{{{{{{Dawn}}}}}}}} I am so glad you took my advice and posted here again. I wish I had some answers hun but Sheri as always has provided you with some good info. Please hang in there and remember we all care. Sending some comforting s

Unread 10-01-2003, 09:06 AM
In the same boat!

I'm not able to post much now due to my home computer being on the blink yet again. Am at the library lurking and just had to pop in and add to this post.

I, too, suffer from FMS/MPS and have been having an incredibly rough time lately. I agree that the weather this time of year exaberates things! I keep thinking that if I just do this or do that (exercise regularly, take this vitamin, etc.) I will feel more normal. Trouble is, I don't. Those bad days still show up without warning and as Joselle said, NOTHING seems to really help the pain and fatigue. I do take the muscle relaxer Soma on a daily basis and some days it helps.....others it doesn't come close.

I find it hard to believe that this monster isn't progressive! And how in the world do you tell FMS/MPS symptoms from something else that needs attention? And finding a doctor that you can afford that knows how to deal with this monster....ugh! I applied for state medical assistance in mid August and was told that I would be approved for any care starting June 1st. However, I've yet to get documentation of this despite calling and calling and calling. I need to go to the doctor and I need to have some meds refilled --- but am too broke to do it.

Anyway...I know I'm whining....but I just wanted to let you all know that I feel for ya's!!! I've also found the best source of info on FMS is other sufferers. Take care ladies and someday we WILL find that off ramp!
Unread 10-01-2003, 11:17 AM
(((( Dawn ))))

I'm so sorry you are really having a bad time again! I can't imagine what you are going through! I only have one thing going on right now... But I wanted to give you a great big ! Try to take it easy and I hope some of the other road dwellers can give you some useful info..... Hang in there sister!!!!!
Unread 10-01-2003, 12:32 PM
I'm here again.... :(

It is good to see you again, but I am so sorry that it isn't with better news. I don't have any experience with RA but wanted to drop by and give you some s

The Road is a difficult place to be, especially when the answers and the off ramp aren't forthcoming. I am still on this Road too.
Unread 10-01-2003, 12:43 PM
Some ideas

Dear Dawn,
I'm sorry you are not feeling better. I have severe joint pain also (not FM or RA, but similar, I think) and like Joselle, notice this time of year and spring are absolutely awful for me. It does help me to chart my pain and know that, since it flares seasonally, there is a point where, since it is worse now, it will become better at some point in the future. I also have monthly flares (about the time I would have a period, if I had a uterus) and find that charting the rythms helps me with the "mind control" part of this.

I take celebrex (a cox 2 inhibitor) daily, and really notice increased pain if I don't take it. It helps me more to take it twice daily, and sometimes the larger dose at night, as I wake up stiff in the am. Is your pain worse am or pm? I am at the point now where I am unable to take any of the other antiinflammatories without gastrointenstinal symptoms. It might be worth talking to your doc about a trial of one you can use daily. I know it helps me a ton. I use this in conjunction with other pain meds.

I have also been getting back to the relaxation/meditation approach to managing pain, and it does help alot -- it sort of "resets me" so that I am less stressed, muscles are not so tight, etc. The pain is still there, but I am more able to manage it. Of course, when I am in so much pain I can't sit still, I can't get to a very deep level of relaxation. Muscle relaxants are the only thing that help me, then.

I take a class twice a week at the local hospital -- pool arthritis exercise -- that last about an hour, is led by a physical therapist and consist of basically gentle stretches in warm water. It truly is one of the most helpful "full body" things I do. We have some fibro patients as well. I also try to accomplish a gentle morning stretch routine and a longer evening routine I found in a the book "Stretching" by Bob Anderson. Hot baths with epsom salt added help me, as do massages (by a professional, not just anyone -- sometimes if they are untrained (like my husband), they make it all worse!).

I have recently finished up a few months of occupational therapy with my hands. We did paraffin baths (something that really helps my hands and feet, especially at night, at home -- worth buying my own) and also some hand exercises that have helped limber me up. I am hoping to do the same thing for my feet. I guess if we have to find relief in pieces, so be it. What was that old scommercial, "Parts is parts"? As to the full body heating pad -- I find keeping myself warm is so important. I think living somewhere warm year-round would be heaven. Covering my joints really helps. I am thinking of investing in an electric blanket. Maybe a thought? My pain management office (I saw a nurse practitioner) was very helpful with ideas. I also have a topical foot cream I use on and off for my feet. I haven't been using it much, but it seemed to help a little.

I don't know about the abdominal pain part. I am so sorry you are suffering so.

With thoughts and for you,
and love,
Unread 10-01-2003, 04:27 PM
I'm here again.... :(

just wanted to send some 's your way sweetie, remember we're all here for ya!
Unread 10-02-2003, 04:54 AM
I'm here again.... :(

Thanks so much for the hugs and kind words....

Loretta...Living in the warmer weather probably does help..but the moisture and humidty really make up for the cold air I believe..lol....can't win for losing. But your ideas sound like something I'll try and I will ask the doc for some samples to see if we can find someting that helps.

Sheri...always a wealth of info!!! It still amazes me that so many can suffer from the same thing and we can still be told that A.) most of it is mind over matter....( I've been told that) and B.) that they know nothing that will really help. Thanks for the links.

Kim...Emily...Susie...Gidge....Thanks for popping in and the added hugs. it means more than ya 's know

Joeselle...Bills sweetie....Maybe between all of us we could srite to congress and make them start more research for all of us??? than we could be the first testers of anything new!!! whacha's think? lol I find keeping my sense of humor is one key to managing all of this....at least I try to.

I know the weather here has been changing so that's prob part of the problem...plus all the stress I've been under, won't go into details in this post...lol that's a heart forum post. Hopefully the doc will help shed some light....but with my luck she'll perscribe something I can't afford.

I'll make another post and ask about IBS and the divercuticulits (sp) I've done some research but you never quite get the whole story and as we all know here hearing from someone that has gone thru it makes much more sense sometimes. I know I just get soooooooooo tired of feeling like I"m never quite well yet. I'm tired of canceling social events due to not feeling well...tired of telling people not today I'm to tired or sore....tired of my house looking like things aren't clean or finished. Everything I do anymore seems to be a challange to just get going to start it.

Thanks for listening girls.....noone in my personal life understands at all and I"ve missed my sisters support...


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