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Avatar universal

Help Seeker NOT Drug Seeker

I have never joined a community, but I am at my wit's end. Most people have back pain of sorts, but mine is considerable and only getting worse. This all began almost 2 years ago...it began in one shoulder and is now in both, also in my neck and radiates down my arms. I have 6 kids, I am a full-time bookkeeper, and a full-time college student. The pain barely allows to me to function, much less be able to do what I need to do each day. Long ago, I thought it was just a typical sore muscle from working at my desk so often (and of course I already have a messed up back from pregnancies, which included twins). After about 5 months of it not going away and worsening nearly every day, I sought out a doctor. I had just recently moved and did not have a doctor, so I went off the referral of a co-worker. At that office, I was treated like I was looking for pills without the doctor even doing an exam. Confused as can be, I went to another doctor. She was a little more helpful, but by the time I saw her the 2nd time, she wanted nothing to do with me. After this, I started to research and that is when I learned of the drug epidemic. We all know the story, so I won't bother sharing all I have learned. As time went on and the pain spread, I did wind up finding a doctor who helped me a little. We tried nerve medicine, tylenol, ibuprofen, muscle relaxers and narcotics. I am being as honest as I can by saying nothing worked at all except the narcotics. My doctor gave me a prescription of 5/325 (10 of them) every 2 weeks. I didn't have to fill them every 14 days, as I'm sure most of you in chronic pain know that all our days are different. Sometimes I could barely make it to the 2 week mark, other times I didn't fill another prescription for a month. Well...here I am today with no doctor to help again (my current doctor was very nice, but said I have to go to pain management because he doesn't know what is wrong with me). I am very stubborn and do not want to MANAGE my pain without knowing full well what is going on. I have to mention that after almost 2 years, I still haven't gotten anyone to do an MRI or anything. In February of last year, he did one xray on one shoulder and said that my bone was no longer in socket, but gave no explanation as to what could have happened. I have taken to the internet countless times and many sleepless nights. I have deduced that the muscle tension in my back has literally pulled my shoulder out of socket. But where is this tension coming from? My latest suspicion and the only one that makes the most sense is I suffer from Myofascial Pain Syndrome. I have all the symptoms and most of the causes explains my life perfectly. The biggest kicker for me was learning how sufferers of this don't respond to, get this...otc medicines (not strong enough), muscle relaxers (not a spasm, so nothing to relax), nerve medicine (duh), etc...it is the pain medicines that work because that is what I suffer from...PAIN! But I can't get anyone to listen to me and help me. I do as much natural stuff as I can (dry needling, yoga, massage, vitamins, exercise), but I still suffer every minute of every day. How do I get a doctor to listen? Where do I find help? How can I get them to understand that I am not a druggie!? I want help and to be fixed...I don't even want to live my life on medication. I am now depressed and can barely function as a mother. Anyone...please, anyone...I need advice and help. I thank all of you who took the time to read my post.
6 Responses
547368 tn?1440541785
Hi Maggie,

I want to welcome you to our Forum. I am delighted that you joined us. However I am so very sorry to hear about your pain - and your plight to find answers and solutions. You are not alone. My heart goes out to you! We'll do our best to help you through this challenge!

We are a supportive and informational group. For the most part we are Chronic Pain Patients. We all have our own stories - most of them are not pretty - just as yours is not.

My dear I think the first thing you need is a DX (diagnosis). Guessing or self diagnosing your pain is not the best way to treat your pain. I do know how difficult it can be to obtain the right imaging and DX. It requires patience and persistent - and assertiveness. There are good, compassionate medical providers out there. It may take searching but they can be found. You don't begin with a PMP - you end with a PMP - following a good DX evaluation.  Your PCP should be your initial source referring you on to a PMP at the appropriate time.  You may require a PMP referral sooner rather than later for some interim management and as they sort out the reasons for your pain and make a plan of care to treat it.

I encourage you to read our archives and older threads regarding the rules, regulations and climate in Pain Management. If you have specific questions - or even general questions please feel free to ask. Some states are more restrictive than others - just as some PMPs are more restrictive. The DEA, FDA, CDC and all of government appears to have gotten in on the War on Drugs - which has sadly become the War on Chronic Pain Patients. But that's a long story as you know.

If your bone is still no longer in it's socket this is a treatable condition. Indeed it should have been treated. I cannot imagine why it wasn't addressed. I am so sorry for the apparent lack of care. If your body is not in proper alignment - such as a dislocation - this effects your entire body. Places hurt, spasm and so forth in response to the abnormal alignment. I think this is the first thing you need to have addressed. Yes a simple x-ray will reveal a dislocation. This alone could cause the muscle tension you are describing.

I agree that you most likely require some extensive imaging like an MRI. Pain in the shoulders, upper spine and so forth could be indicative of a Cervical or Thoracic Spine problem. Providers always begin with the least expensive testing and if indicated will due further imaging.

When you consult a provider I suggest you never ask for pain meds - ask for help - ask for a DX - ask for follow-up and good care - don't ask for medications. It's always been true that we find the best care when we build a trusting patient - doctor relationship. It's even more true today in this opiate phobic and complex climate. I suggest that you research your local medical providers - place their names in a search engine and spend time researching - read reviews and learn which ones are rated the best. It's not an easy task but it will be worth it. Once you select one - make an appointment and begin to build a good relationship. Search for answers.

Once you have a verified DX than treatment van begin. Again it will take time. It won't happen over night. However if locate the right provider and are assertive and compliant you may have at least some answers within a month - than go from there.

It took me years - not months to find a DX and treatment(s). I know how difficult this time can be. I - and many of us have spent numerous sleepless nites - and some of us still do. Sadly there are not quick and easy answers.

Do you have Myofascial Pain Syndrome (MPS)? It's possible. MPS is a fancy way to say you have muscle pain. It refers to pain and inflammation in the body's soft tissues - as I am sure you know.  A PCP once threw that DX at me and it was 100% .  MPS is a complex DX - usually a clinical DX - I encourage you to have other conditions considered and r/o (ruled out) become you even let them say MPS.  

I hope something I've offered has been of help. If I wasn't clear please re-ask the questions and I'll try to explain better. You deserve to live your life with the least amount of pain possible. You deserve to be heard and treated with respect and dignity. Don't settle for less my friend in pain.

I could say so much more - but this is becoming rather long. Sorry. I hope you'll  be active in our forum. Feel free to ask additional questions and share your challenges with us. I'll look forward to hearing more from you. Hang in there - you'll get through this challenging search!

Again Welcome and Warm Regards,
~Tuck
Avatar universal
My biggest struggle to find a diagnosis is none of the doctors I've seen will order an MRI. After my shoulder was found to be dislocated, I was sent to an ortho doctor who gave me a shot in my shoulder and would not speak to me regarding my entire struggle. I am afraid to search for, yet, another doctor due to the "doctor shopping" I have read about. I have an appointment with my regular doctor in just a few minutes...I'm just hoping he will listen and start my case fresh. If not, I am at a dead end. The doctors here will not take patients with unexplained pain for the fear of their licenses. Rock and a very painful hard place...
547368 tn?1440541785
I know your plight. I've been in a similar situation. No provider would listen and I was at a dead end. This went on for years! Like you I too was concerned with the Doctor Shopping Laws!

I got luck - or blessed! My PCP left the clinic and I had to begin again with a new Doc. She was a jewel. I didn't even have to bring up my chronic pain. She "saw" it and made it her mission to find a DX. That's what I hope for you!

So that said - can you leave the current clinic and PCP that is treating you? Do you have a good, close long term relationship with your current PCP? If so - appeal to him/her. Don't ask for pain meds - ask - indeed insist on answers.

How was your appointment.

4 Comments
Sorry for the delay, it's been a long and extremely rough weekend. I went into my doctor's office and told him he was either going to have some forward progress on my case or refer me to another place. I think he finally saw what I was going through (kind of). He placed the order for an MRI, but he said it will be a struggle for the insurance to pay for it and put me on Cymbalta. I am not exactly depressed, but I do struggle with good moods these days when the pain is intense. I didn't once bring up any kind of medicine. However, he agreed that it is most likely MPS and said we will just have to wait and see. The Cymbalta has made me sick and tired and my husband has to force me it to me each night. I hate pills of all sorts and these making me sick makes me want to run! So now, I am sick AND in pain! I am hopeful that my doctor actually listens and stops treating me as though I am a pill popper. It is infuriating and I can barely stand it any longer.
To explain "I hate pills"...if it helps, I will take them. I am so at the end of my rope that the waiting period to see if Cymbalta will help angers me because being sick and in pain is way worse than just the pain. It's hard to explain, but I'm sure you understand LOL. I am going for another dry needling session this week and hopefully a massage next week. I always try a more natural route when it is available. I just want to get through the moments that I can barely stand to be awake :(
I do understand MaggieMay. Being sick - and in pain is more than difficult. I'm so glad to hear that you were assertive. I am hopeful that it will pay off in the long run.

Cymbalta often takes 7-14 days or more to be effective. Sometimes it can help manage pain. It's normally ordered as part of the plan and not all of it. Hopefully your Provider will add more to your treatment.

It's not unusual for people with  Chronic Pain to have some depression. Usually that depression is called Situational Depression, meaning the depression is caused by the situation. Address the situation and the depression will subside - without anti-depressant medications.

It's also a fact that ppl with depression can have Chronic Pain - as Chronic Pain effects ppl in all walks of life - including those that are affected by various medical conditions.

So the question is like the Chicken and the Egg - what came first? Again usually it's the Chronic Pain that comes first and then the Situational Depression.

I too encourage you to continue the Cymbalta - at least to see if it will help. If you find after an appropriate amount of time it is not effective than be sure to discuss this again with your Provider. There are other anti-depressant medications that may be more effective for you.

But let's back up. How "sick" is the Cymbalta making you? What do you mean when you say,  "sick?" Are you having bothersome side effects - or are you experiencing intolerable side effects? There is a difference. I suggest you contact your Pharmacist. Their opinions are invaluable - and free. They know medications even better than most Providers. They may be able to offer suggestions - or even say the "sick" you are experiencing is not within limits of normal and you should contact your prescribing Provider.

I've tried multiple anti-depressants over the years - at Providers instance. My system rebels when I introduce an anti-depressant. The side effects have been intolerable. That said, I do know ppl that have had great results. Where you will fall in that range, only time will tell.

I admire you for following your Providers directions - even though you are struggling with the medication. You are building a good relationship. However if you just can't tolerate the Cymbalta than you need to speak up. Please call your Pharmacist. If you're not comfortable talking with the Pharmacist than contact your Provider.

I hope you'll be able to get the MRI approved through your insurance. Your provider can be very instrumental in obtaining the approval -  if he's in your court.

Take Care my Dear - and Please let us know how you are doing. My heart goes out to you!

~Tuck
Are you ready for this...??? Drum roll please! I got my MRI today and just heard back from the doctor. Herniated disc c 6-7. I have been begging countless doctors for an mri for nearly 2 years. They want me to see a neurosurgeon...a surgeon!? How bad was it 2 years ago? I am so thankful for a diagnosis, but I am angry at the same time. To be treated as a druggie for so long when, in fact, my pain is real and now I'm facing possible surgery? I feel like getting an attorney at this point because my losses are so numerous, I don't even know where to start. Thousands of dollars, lost time at work and with my family, possible surgery vs a different treatment if caught sooner, etc etc etc. I have always been such a happy, free and active person and now I am sad and lost and depressed. They caused me to be depressed!!! I am waiting to hear back from the neurosurgeon's office as to when I will see him. I still feel lost and I am now so scared at the thought of getting surgery. Any advice or experience of this kind of situation would be so greatly appreciated. Much love :)
Avatar universal
Really feeling for you.   It sounds to me the doctors have failed you in your case.  Look at the stats for failed back surgery before you rush into surgery.  There are some amazing doctors out there, but still, everyone just knows what they know.  It's easy to get trapped in the medical model reality even if it doesn't address the cause.  For example, over half of patients discovered to have a herniated disc don't have any pain associated with it; it just happened to be seen while they were getting an MRI for something else.  This leads to the question, "why is that?"  You have to go deeper.  The drugs make it so you can't think as clearly, entrenching you further.  you already gave your power away to that doctor by trusting and trying to be doing what they say even though you felt uneasy about it.  Makes me angry too.  You said too, that you always tried more natural routes when available.  They are available, you just have to find the right ones.  Just like docs there are some so-so alternative practitioners out there and  also some really amazing ones.  If my words ring true, use them, if not put them aside, I'm rooting for you!
2 Comments
I have an appointment with a neurosurgeon at Semmes Murphy this coming Wednesday. These doctors are world renowned and actually saved my father in law! However, I am not going for a surgery consult, I'm going to find out everything I can including ALL my options and just how advanced this has become (due to the neglect I've faced). I already contacted an attorney to find out if I have a case against the 3 or 4 doctors that did this to me. I am beyond angry and scared as can be. I've spent thousands of dollars, missed countless days of work, lost so much time with my husband and children, and am now on depression meds cuz of this all etc etc etc. I'm sure you know the story! I really don't want surgery but I also don't want to live on medicine or live in pain for even one more day. Oh and here's the kicker. When the nurse called to give me my results, I asked her to question the doctor for only 2 things...do I need to continue taking cymbalta and does he want to see me at all before my appointment with the neurosurgeon. That is all I asked. When she called me back she said, "yes, continue the cymbalta and if the pain is unbearable, take ibuprofen or go to the er". I never said to ask about medicine regarding the pain and she didn't even ask if he wanted to see me this week. I was floored that even after seeing the mri results and knowing he was responsible for neglecting to find the cause for this long, he still acted like I was asking for medicine!!!! I promise I didn't and he knows ibuprofen does nothing. I am thankful to not have to see the drs here anymore and having a reason to see a specialist. I'm thankful for an answer. But I won't be quiet about what they have done to me and my family. I won't lie down and let them get away with this...I will try all I can to fight this fight in the hopes drs start helping the people who truly need it. Yes, there's a drug epidemic but the other side of that epidemic is the suffering of those like me and u. They have to get back to treating patients, as we all know they can tell a drug seeker from a patient who's truly in pain. I will continue to update u as this goes along. Here's to the beginning of healing and the beginning of my new fight of getting my rights back and hopefully countless others!!!!
Thanks so much for the update. It's appreciated.

I understand how angry and frustrated you are feeling. I felt the same when an astute Physician finally found the reason for my years of pain. Because my condition was not found or treated for so many years it is now untreatable. Angry? You bet! I can imagine you are feeling much of what I did. My heart goes out to you!

You're right on - surgery should be your very last option. Surgeons do more than just invasive surgery. They may suggest injections or other treatments. Be cautious if surgery is the only option suggested by the Neurosurgeon. I also encourage you to obtain a second opinion. Two heads are always better than one.

I was recently DX with structural problems at my C5 and C6. It's not what disabled me some years ago. I too was referred to a Neurosurgeon. I made the choice not to go through with that consult. I do have the pain and limitations that you experience. I will have to have that consult but I'm not ready for it yet. My PMP and I think ti can wait - but again I am not having your amount of SX. (symptoms).

Cervical Spine surgery is a very complex and delicate undertaking. The structures are very small and require great skill and precision. Make sure you have thee best practitioner in the area. Research his credentials. Ask how many of the exact same surgeries he has preformed and ask his success rate.

You may want to consult a good PMP (Pain Management Physician). They can treat chronic pain. You don't have to be in constant horrid pain. Do some searching and find a good one in your area. If you can't locate one in your immediate areas - than look further. It'll be worth it.

I'll be interested to learn if you have a case. I didn't. Physicians get away with missing DXs, not listening and under-treating their patients all the time.

Medicine has become a business. Most clinics are owned by a large corporation - meaning the Provider is owned by the corporation. Numbers are set, they must see x number of patients a day. They are allowed so many minutes per patient - Minutes!! I can't count the number of times I have been told by a Provider that they didn't have any more time for me on that appointment!! Time? The average is 6 -7 minutes with the patient!  Your allotted "time" includes documenting your visit and the peripheral things that go along with your appointment. Actual patient time is very limited.  How can any Provider get to complex issues, DX and TX their patients in 6-7 minutes? It can't be done. You are proof of that fact.

I hope you'll find pain relief. Please let us know how you are doing. I'm very interested in hearing your about the rest of your journey.  Be assertive and insist on great care!

My Best to You,
~Tuck
Avatar universal
I read through all of the comments and your original post. I am so sorry that you are going through this.  
My story is I hurt myself at work when I was 22yo. At the time I played at least 3 soccer games a week and more if I was able. I herniated and ruptured L5/S1 and had an orthopedic workman's comp doctor do surgery.  I was told it would make me well enough that I would be back to work and my old self in no time.
Avatar universal
Sorry, I don't know how to edit my first comment so I will finish my story here.

After my first surgery I was worse after surgery than before it. I didn't think I could live like that so I got a neurosurgeon to look at me. He said because I was young, thin, and healthy that I would be a great candidate for fusion. The second surgery was a huge failure. He did the surgery wrong and I had unbelievable amounts of pain to the point that I could not tell that I had a kidney stone that was 1 inch by 1.5inches big in my left kidney.  I thought my back pain was a little bit worse but that it was because of my back and not something else.
I ended up seeing a third surgeon because it was so bad and he found out what was wrong. I had screws in the joints of my spine and not the bone, one screw was too long and it was obstructing my bowl from the outside, and that I never did grew the bone to make it stable.  The third surgeon said I had to do surgery to take out the screws that were causing me issues and that hopefully I would be in less pain after.  He ended up having to do a 2 level fusion to fix it. The third surgery eliminated the horrible stomach pain I was complaining about to my 2nd doctor.(he told me I was just constipated from the pain meds) It gave be back some of the feeling I lost in my leg and foot too. I had to walk with a walker and/or a cane for 6 years after the 3rd surgery.  
After all of that when people tell me that have back or neck pain and are thinking about surgery I tell them that they shouldn't do it unless you are so bad that you have no quality of life. If you are so bad that you can't control your bowels or bladder, you are confined to a wheelchair, and never leave the house then surgery is something to consider.  I have said to many people that if you don't wake up every day and want to blow your brains out that surgery is probably not the best option.  I know only a few people who were really happy with spine surgery and so many more that wish they didn't do it. If a close family member came to me and said they wanted to have back surgery to fix the pain I would do everything in my power to talk them out of it for at least a couple of years.  It takes a long time to try all the medicine combos, PT,exercise, massage therapy,lifestyle changes,  injections,and everything else first before surgery should be considered.
I know you are frustrated and hurting but once you have surgery you can't undo it.
I hope you find something you can live with and you feel better.
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