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Old 08-10-2011, 12:42 PM   #1
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How do I know when it's time to change meds?

I've written on here before about my chronic shoulder pain. I've been to every specialist I can think of and also tried alternative medicine such as acupuncture, massage, chiropractic, physical therapy, etc. I currently recieve meds from my PCP. I have signed a drug contract with her. I've been to two pain management doctors but have so far not found one I like. The last visit to my PCP was rough, as she had a patient who was smoking their pain meds and had to be sent to rehab and I think was thinking the worst of me and my pain situation and meds. And like I said, she had me sign a drug contract that day and was really rude about it.

I finally went to see a physical therapist who wrote a long report back to my PCP. This changed her whole attitude towards me! I have a twisted pelvis which pulls my ribs and changes their shape and length and ends up pulling on my shoulder causing horrible shoulder pain, occipital headaches, arm pain, wrist pain and finger tingling. Bascially my physical therapist told me I was a trainwreck (in nicer terms of course).

I've been seeing my PT for a couple of months and doing the exercises but so far I'm not seeing much relief. And work is just awful. I take oxycodone 10mgs three times a day and klonopin .5mg 3 times a day (helps with the spasms and tightness).

The meds worked pretty well inthe beginning but are starting to not work as well as meds tend to do. I was trying to keep on the lowest dose possible and supplement with alternative therapy like the PT exercises and alternating ice and heat. I do ok on my days off since I can sleep in a little and I am moving around throughout the day. My symptoms seem to be at their worst when I have to sit still for long periods. This includes my job where I sit at a computer 10 hours a day, three times a week. We went on vacation last week and I also discovered that riding in the car causes considerable pain as well. On the days I work, I'm in a lot of trouble because I only get three doses and must start taking them at 7am. I've been spacing them out every four hours but this means I'm taking my last dose at 3pm and I'm a mess by the time I get home...and then I get to make dinner, play with my daughter, etc...hobbling around with an ice pack. I use binder clips to keep it in place on my shoulder. Pain's normally about 7+ by the time I get home from work.

Last time I went to fill my oxycodone (immediate release) the pharmacist asked why I don't take the extended release (oxycontin). I knew about this med but was trying to hold off on it, hoping the PT would work faster than it has.

I'm to the point where the oxycodone only works 2-3 hours. The fourth hour I'm watching the clock. It's horrible. My depression is starting to get the better of me again and I'm almost to the point that I can no longer get out of bed and any enjoyment I get out of life is being sucked away.

I have a hard time asking for help. I'm also feeling extremely guilty about the dose I already take so asking for more or a different medication is really hard for me. But I am starting to feel like I'm going to have to. I keep trying to repeat to myself the following two things:

It's ok to ask for help.

I deserve to have a decent quality of life.

I know most of you are experienced at this type of stuff. When is enough just enough? When do you ask? I know I need to go back to my PCP since I've signed the contract with her, explain the situation and then most likely I'll get sent to another pain center. I don't feel it's ethical for her to continue prescribing meds for me that she may not understand or that could get her in trouble. And I know I have to ask her permission to go to a PM doctor since I signed the contract.

Is this what you would do? I'm so scared and ashamed.

Jessupl

 
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Old 08-11-2011, 09:29 AM   #2
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Re: How do I know when it's time to change meds?

i am just wondering if they have given your 'condition' at least some sort of an actual dx or label? having your entire pelvic area twisted like that(and creating THAT level of actual 'pull') could either be from birth as in a congenital deformity or was this just something that 'happened" more slowly over the years, or even an MVA or other trauma? the answer WOULD make a differenece in even what CAN be "righted" again, and how things would be if you were actually born with this 'significant' level of twist? it has more to do just with how your bones would have grown "along' with this condition vs without it?

if you could describe in just simple terms the 'hows' of what generated this(the pain aspect) in you, when it really started to get worse(any muscles held 'hostage" like yours are WOULD naturally become worse with age and growth) and how old you are now, it would help as far as giveing you the BEST possible advise as to how to go about kind of 'undoing it' to some degree which may really be a good possible with the appropriate therepies.

as far as the meds you are on, if this were me, i would seek out the much much better more knowledgable expertise of a good PM clinic. they just can offer you soo much more as far as the "appropriate' modalities/therepies to try and bring your pain down and Rx the 'right meds' for you too there that most primary docs really just do NOT want to do, but some who are like yours and mine will. i used to have my sick levels of pain try and be managed by only my primary, but we did come to the point, when my oxycontin just HAD to be raised along with me desperately NEEDING other better therepies that just "could' help me the most and went with the referral to my current PM. it truely was the best possible move i could have made for what i had. i had then and still do but better managed, spinal hell in my c spine from two surgeries(c spine is now currently litterally falling apart on me), and alot of 'fall out' from pretty significant spinal cord injuries too that just create their very own non responsive to any real narcotics pain syndromes. and RSD in my R knee with some structural damage in there too just becasue. but my myofascial damage up in from the base of my skull on down thru/and under both shoulder blades was a nightmare of solid muscle wads and sooo overly tightened fascia that is what surrounds the muscles that 'pulls' them together and out of alignment too(this is kind of what is underlying in you but on a much grander appearing scale from what you described). it was insane levels of pain JUST from that myo crap til they referred me for what is called myofascial release therepy with this very specific therepist who has been doing this particular therepy for well over 20 years now. i went in not knowing what the heck this was exactly and ONLY becasue this man and this therepy allowed me some huge 'peace" up in an area that when i started was at LEAST three points higher, i have stayed in for over three years now. this therepy if you have not yet tried this for what you ahve going on could REALLY help you to allow things to just 'let go'. alot of course really depends upon just what that underlying generator just is that 'keeps' you in that twisted posistion too.

being on any type of more in depth type of muscle relaxer like the benzos with what you have IS a really good thing, so that klonipin IS a good med for you considering the over tightness(i personally am on valium). do you ever have actual spasticity in your body anywhere? have they done any recent MRIs on you just to see(from c spine on down since this IS impacting your shoulder too)what may or may not actually be being impacted at that critical spinal and cord levels thruout the spine? i would not be at all suprised if you do have something impinging something just considering how the main structural part of your spinal bones are right now.

if you could answer some of the questiuons, esp more pertaining to the hows of what you ended up with, really would help alot. but there ARE much better ways to at least "release' in you what is creating such an impactful twist/contortion in your body like this. it really does depend on what did this and when. but DO see about getting referred from the current primary TO a good PM right now. it really is needed and most primarys, besides not really liking or wanting to rx narcotics, are usually more than willing to refer any patient that needs them in an ongoing way TO the responsibility OF a good PM. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-11-2011, 11:47 PM   #3
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Re: How do I know when it's time to change meds?

Okay, IMHO I think you need to change your meds around some. I'm not a doctor, just giving advice from my experience with these meds.

So you take SA oxycodone, is that it? You didn't list any other meds or a breakthru med.

The reason your pain is not controlled is because the med your taking was never designed to do that 24 hrs. a day for an extended daily length of time being used.

Short Acting beds are just what they sound like, you can get some release, but generally it takes at least a 1/2 hr. to start working and hits the peak around the 2nd or 3rd and from that point on the pain coverage decreases and the level of pain increases and then you have to wait until 4 hrs is up to take the next dose, so a major problem with this is that you've lost control of your pain and you need to get it back.

The Long Acting meds like Morphine, MSContin, Oxycontin, Methadone, Kadian, etc. are designed to last 8 to 12 hours depending on the persons chemical/biological makeup. These you take twice a day, one in a.m. and one in the evening. The med doesn't rise and fall sharply over a short time. These meds take a slow leisurely stroll on the plateau that is the extended or slow release of your LA med.

Generally people who are on a LA med has another med with it for Breakthru pain. Sometimes the pain can get so bad you just need more coverage. I myself prefer to have 2 different meds that work on different pain centers in the brain!

So, I hope that helped clear up the confusion some.

Good Luck and take care,

Kat

 
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jessupl (11-30-2011)
Old 08-12-2011, 08:37 AM   #4
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Re: How do I know when it's time to change meds?

i soo forgot to address that part, thanks kat (duh, one of those mornings). i totally agree with what she stated up there, you DO NEED to have much better all around coverage with an LA med along with a possible BT med for any pain that can just get a bit out of hand. but seeing if a new doc could go just a bit higher may help too(this was when i needed to switch to a good PM). 10mgs of even the LA is still a pretty small dose only 5 mgs an hour after taking and another only 5 mgs down the road (the time of the 2nd release with this 'new version" tho is not actually even stated in the 'new rx lit" for some sick reason, but used to be 'around' six hours) for what you described and what i know the deeper myofascial crap just can get to be like all on its own. and you have this pretty much thru both upper and lower torso too, based just on HOW having that 'deeper pelvic twist' would impact your legs as well(esp knees hips and ankles where the joints are, if it has not yet already done this, it will if not stopped from doing it)) which just comes along with what you have too in most cases. THAT alone can generate pain down both legs and low back usually too. so either asking THIS doc to see if you could do(and mention that this recommendation was given by the pharmacist too like you did here)what she suggested may give you better coverage, esp if you could get this three times a day like you are now, or have her refer you over to a PM who would not generally have as much of a problem in doing this, esp at this dose amount to begin with. but if you just even could try this at two times a day, it may make a huge difference in your overall pain coverage. the newer oxycontin tho does not appear to me, and i know others too the stated full twelve hours, even the old version did not go THAT many hours(i got about 8). but most PMs do know this too. just see what an actual(better than you saw before) PM feels you should try.

and DO not be ashamed becasue you have to suffer with a very painful condition that simply requires the 'appropriate" help and therepiy to bring it down to tolerable so you can live a somewhat 'normal' life. that is NOT on you, its unfortunetly your particular body and what ITS doing TO you. this was NOT ever an actual 'choice' you made to suffer with chronic pain. we are in that same exact posistion too, so you are NOT at ALL alone here. while being somewhat scared of whats to come in alot of ways would be considered to be a normal response, but shame? do NOT EVEN let that one "inside your head" anymore, K? nor the guilt you say you are feeling either. some people just DO NEED the level of relief and help that narcotics among other meds and modalities offer as relief to even try and have a 'normal' day, and 'normal' IS a highly relative term to each individual.

just exactly what was wrong with the other PMs you saw before that you mentioned above? were you referred ONLY for particular procedures or what? if this was also BEFORE that PT finally figured out how messed up that pelvis was? things may be different for you now(look at what THAT info did for your primary?), if the problems were that your pain was NOT being taken seriously as it should have been. docs just DO feel much more confident in rxing particular types of meds when they can either SEE the problem or it actually shows up on particular scans or in your case, the PT figured out what has been going on inside your body. the thing here is, unless you were born with this, 'something' more underlying has actually caused this overall pull and twist inside your bodys overall structure(it takes ALOT to even DO that much "structural' pulling? and THAT is what needs to be actually fully Dxed in you, the generator of what IS overly stimulating that fascia surrounding muscle with wayy too many inflammatory signals that DOES create that 'overtightening" in muscle. you need to find out of this is actually caused by some type of real 'condition' that can impact muscle or ligaments or connective tissue in a person, or if this occured over time with 'something' that is there, but either just has never BEEN scanned and found or did not show up when you had a possible scan either? some things can show up amazingly well on particular scans, while other real true pain generators wont for whatever reaon. any scan is ONLY that, a scan and not a kodak/picture moment. but finding out the 'whys' of this really would help in obtaining the best POSSIBLE types of treatments and therepies. and that myofascial release therepy that i have used, and still using today could be really amazing for what you appear to have, that is just wayyy soo wound up in your muscles tendons and ligaments(it is all interconnected with fascia covering outter muscle that recieves the inflammatory signal, fascia thins then just will clamp down on and around the muscle, muscle goes to tendons and tendons to ligaments, and ligament to bone).

if you have not yet had any types of real in depth scans, now IS the time. pelvic twisting can easily impact the spinal levels(discs, nerve roots and even the cord level too depending upon the level of twist), and in many ways if this is actually all the way up to that shoulder. its interesting tho that from that you stated that shoulder area is what was your initial complaint when you posted before? this just 'could have" started at that shoulder muscle groups and becasue nothing ever got released and that outter fascia just IS all interconnected from litterally head to the toes in covering all muscle, organs and blood vessels, it could, over time start impacting lower muscles groups too(it would simply start pulling other muscles "into the "mess'). that just could be what generated the twist in that pelvis esp if that more twisted area(this WOULD bring that hip more "upwards" on the impacted side) is on that same side as your shoulder problems. its just the 'how' in how all of our fascia and muscle just is all connected to each other inside our bodies. and what CAN happen over time with no real release of muscle. it could go on and on and on down thru lower or even upper groups too. how does your neck/c spine feel right now?

enforced sitting is MY personal worst nightmare too with what i have going on in both legs with the RSD in the R knee and motor/muscle damage(lost that motor nerve to my foot during my cord surgery for about a minute and it came back firing like every other second now). each signal simply will build energy to my L leg that creates an ongoing high level of spasticity to have to 'dissipate' like every fifteen minutes which is done by HAVING to stand up and do just simple weight bearing before that built up energy from that motor nerve explodes on its own. and having that bad knee simply 'bent' at all creates its own freakish crap/pain so i can relate to the sitting making your situation much worse. but this also can 'push' everything more 'upwards and into the upper back/scapula/shoulder area too everytime you sit, and right 'into where you just also are having issues.

have they ever done an MRI ON your shoulder/rotator cuff area just to fully see if there is not something more underlying generating what sounds to me the way you explained this is what WAS your real first initial pain area? i know you stated you 'saw" other docs but not whether you actually had ANY types of scans done like esp the MRIs on that area or spinal. knowing if anyone has actually even taken the time to simply DO that considering this now 'confirmed pelvic twist' and what also can be generated from spinal nerves or esp cord contact with spasms that just come with that territory, let alone from myofascial crap really would be good to know, and any actual findings? its just now that they KNOW everything IS just 'off' a good spinal and shoulder MRI would simply best define any problem(inner rotator cuff) or contact areas too.

do you actually get up from that sitting posistion frequently when at work? that does help, and if you can at all bend your whole upper back area in kind of the opposite direction backwards(to YOUR tolerability of course), that would help even more. ANY opposing types of stretching usually helps release what is sitting in that same posistion that kind of starts to 'settle into' the muscles level(or stretch anything backwards/in opposition as much as you can).

does your current dose of klonipin actually help during any given day? just how long have you been on that dose? you can become tolerant to the benzos too just like narcotics but it usually will take a bit longer to get there. i have had to have my valium raised once since i started on this in early 04. it all kind of really depends upon your overall spasticity levels.

just do NOT allow this situation to define you and force you to feel things that are NOT something you created, K? i know that can be hard at times, but how our actual docs 'see us' or how we 'think' they do, really can also impact us in many ways, including the feelings we have reguarding 'us' and our situations and our value as WE see it now vs before this too as things decline and not at all the 'old' us.

just finally getting an actual reason/true dx of what IS the main generator of what you are feeling will make a huge difference in just even 'knowing' the whys, and how seriously our PMs or primarys take our situation/pain. and you DO need to find out by whatever means needed, what has created this ongoing nightmare your living in from the very beginning. and mostly, you just DO deserve to be treated as someone who is suffering and in need of the 'appropriate' help. good luck with all of this hon,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-12-2011, 12:51 PM   #5
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Re: How do I know when it's time to change meds?

And as usual, I totally concure with my friend, I've been in pain *l* or pain mangement since I was 17...I'm now 42. My current meds are MScontin and percocet. My doses is are MScontin 120 mgs/day, Percocet 10/325 up to 6 per day as needed...generally don't need all of them, or sometimes any of them, depending on the weather, activity level, that kind of stuff.

My point being that for someone (ME!) whos been in PM for 45 years.....it's not that high of a dose for these kinds of meds. My pain stays at a 5 - 6, and on a nice cool early summer day, when I've not done something stupid like hiked down a rock path, off a cliff and to the river below so my 12 yr. old can fish...I can get the pain to a nice 4. The thing is, it's better to have adjustments and dose increases in your LA meds, as opposed to taking large amounts of high dose breakthru meds, if possible...and OH YEAH, don't do stupid stuff like I mentioned before, I don't know what in the heck I was thinking. *l* Just that overwhelming need to be normal again, I guess!

Take care,

Kat

 
Old 08-12-2011, 02:32 PM   #6
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Re: How do I know when it's time to change meds?

It's so hard to read these responses. I so, so appreciate the understanding and just talking to other people that know what I'm talking about!! Almost everytime I post I cry when I read the responses because I feel so bad about myself and it's really gotten ahold of me both physically and mentally.

To answer some of the above questions, I've had many tests done. I went to see my PCP and she felt that my description of pain and symptoms sounded like a C-spine issue, so this is where we began. I've had two MRI's of my C-spine done. They both were summarized by the person that read the films as "unremarkable". The only thing I have is ankylosing spondylosis which is genetic, but I've been told it's a mild case that doesn't seem so be progressing and it shouldn't cause any of this pain.

I then begged and pleaded for a shoulder MRI which I finally got. At this time I also got the second MRI of the C-spine and this time they ordered it without contrast followed by contrast. There were no shoulder issues at all and again, the cervical spondylosis showed up in my C5-C6 and C6-C7 area. And again I was told this would not cause me this pain.

I've taken these results to three orthopedic doctors along with the films. I asked them to not only read the reports but to look at the films, since the person interpreting and documenting an MRI isn't always right. I've been sent to two neurologists. I took the films to both of these doctors as well. Both neurologists did nerve testing..both nerve conduction (the one that feels like a cattle prod) and EMG (I think that's the one where they insert needles into specific muscle groups). The first set of nerve conduction/EMG testing was testing from my C-spine down into the upper arm. I then did some research on my own and researched about ulnar nerve entrapment and it seemed to fit my symptoms perfectly. I was again, wrong. Nerve conduction and EMG showed only a slight slowing of nerve impulses at my elbow.

I also had a nuclear medicine bone scan done of the C-spine to check for microfractures. Again, negative.

Because I cannot seem to get a diagnosis, I get labeled with different diagnosis' with every doctor I see. Normally I get grouped into the cervical radiculitis diagnosis. Which is just the term they use when they think you have radiating pain from your C-spine. I've also been stuck with myofacial pain syndrome diagnosis.

I've been to a couple different PTs and all they focused on was strengthening my shoulder muscles. The session would start with an incredibly painful neck and should massage, followed by exercises that were so hard for me my whole body would shake and then followed by either ultrasound treatment or TENs with either heat packs or ice packs. They finally discharged me when my pain got worse. They sent me home with a TENS unit which I've never really gotten any benefit from. I went to a second PT that told me to crank my head back as far as it goes and then rotate my head from side to side. He told me that this along with postural training and a lumbar pillow would fix all my problems. He was wrong. I was actually hyperextending my neck according to my current physical therapist.

In a way, all the testing I've had has really made dealing with doctors even worse. They look at the MRIs and basically tell me to suck it up and go away.

My PCP finally found me a wonderful physical therapist who is also a licensed yoga instructor. She is the one that actually put her hands on me and diagnosed me. She was explaining to me that only structural issues can be seen on most diagnostic tests but functional issues are an entirely different thing. She looked at me for about a minute and a half and then pointed out to me in the mirror that you can see my collar bone on the right but it's gone on the left (my shoulder pain is in the left shoulder). I could totally see it and feel it once she pointed it out.

I have a 2 year old. The pregnancy was really hard on me. I had cancer of the cervix a couple of years prior and they had to remove it by doing a cone biopsy. Because of this, I could not carry the baby to term. I was on bedrest for the last two months and she ended up coming a month early and had to stay in the NICU. My physical therapist was telling me that carrying a baby can do all sorts of things to your body and may be what has caused the twisted pelvis. I guess the left side of the pelvis is going too far forward. The ribs on the left have to stretch to accomodate the pelvis and the ribs on the right have shortened. The pull of the ribs on the left causes the shoulder pain. I also had a nasty MVA accident about 10 years ago which caused a pretty severe case of whiplash. All they did at the time was hand me some medication and I eventually felt better. My physical therapist told me that without rehabilitation of the neck muscles after whiplash, you can run into serious problems down the road.

All this causes nerve issues like arm pain and tingling and numbness in my pinky and ring finger. I have deep gnawing left shoulder pain that feels like it's under my scapula. I can't rub it or get to it since it's so deep. I also have pain up the left side of my neck, across the back of my head and sometimes into my jaw. And yes, I get horrible spasms in my neck. Oh, they hurt so bad. I get to be in so much pain that I can't get out of bed and I get dizzy and nauseated. Before I finally asked for pain meds I lost 20 pounds in two weeks. I was sitting in the corner of the kitchen sobbing and I looked around and realized the house was a huge mess, my daughter was not getting the care she deserved, my yard was full of weeds (I'm really into my plants). Everything had just gotten out of control. I called my husband and he took me to the ER which is how I got a referral to the first orthopedic doctor.

So...seems to be multiple issues. And I don't know if the PT's diagnosis will do much for me either...since it's not a test a doctor can hold in his/her hands. My PT spent the first few visits showing me some exercises to strengthen and straighten my pelvis and work on core strength. Then we started core exercises where I sit straight against a wall and pull in my core while I focus on breathing and reaching out in front of me. This is to train me to use the correct muscles again. She worked on stretching out my neck muscles and joints on the last visit and now I do an exercise where I lengthen my neck and turn it slowly side to side. She tells me that all this instability has caused me to start using the wrong muscles to even do things like turning my head. So far, she hasn't hurt me or caused any excessive pain and what she's saying makes more sense than anything I've heard up until this point. She's also very encouraging and tells me that if I keep working hard I can fix this.

Oh, and to answer the question about the two PM's I visited. The first one told me to go to PT (I was only taking Ativan at this time which really helped with the pain). He told me that this was a sign it was all in my head and I needed to suck it up, quit whining basically and go to PT and immediately get off the ativan since it was so habit forming. He wrote a letter to my PCP who was prescribing the ativan and told her that in his opinion I should no longer get the ativan. (Even though it was helping my pain at the time). My PCP went through this report with me and she told me she didn't agree, thank goodness.

The second PM kept scheduling me with the assistant. They had one PM doctor that also was an osteopath so I scheduled a visit for some adjustments and they still scheduled me with the assistant who then told me that the doctor was not available that day and I needed to reschedule. He also told me that I needed to find my "happy place" and that would help with the pain. Did I forget to mention that it always took 3-4 weeks to get in? They ended up doing two sets of trigger point injections on my shoulder muscles which didn't do a damn thing. They never offered to do medication management because my PCP had started me on the instant release medication.

So that's where I'm at. I did call another Pain Center but they required me to get the last three months of my records and then they'd review them and see if they would "accept me" into their program. Meanwhile, my PCP sees me every couple of months and refills my oxycodone and klonopin.

I started thinking about the long acting meds when I went to the same pharmacist for a refill a couple of months in a row and she asked me why I wasn't taking the long term release version. That, along with the increase in pain is why I have started to think of another med possibility.

How hard is it to get into PM docs in your area? Three months of records and then having to be accepted seemed excessive. I felt like I was trying to apply for college or something.

Anyhow, that's about it. Sorry so long, I've just had so many things going on!!

Lainie

 
Old 12-18-2011, 12:26 AM   #7
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Re: How do I know when it's time to change meds?

I know this post is very old nut I want to know if you are still on this board. I think I may have been born with the same twisted pelvis and would like to chat. Please reply if you van provide an update on your progress

 
Old 12-19-2011, 05:16 PM   #8
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Re: How do I know when it's time to change meds?

thlln7533
Yes, I still come to this website quite a bit to read and catch up on new topics.

I'm not sure if my issue was something I was born with or something that happened later. I hear it is quite common to have pelvic issues after childbirth but I had my daughter almost three years ago..

So yeah, let me know..always willing to talk to anyone about their condition and hearing what makes it better, worse etc.

 
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