I Need Answers For This Pain

Hi, I'm new here but I'm just so tired of the pain and would do anything for some answers. Three years ago, I started having hand, wrist, elbow and shoulder pain. I then had surgery on my shoulder last year after months of physical therapy. They removed some bone spurs and scar tissue from repeated rotator cuff tears. I recovered pretty fast and things seemed ok.

Then, a sprain in my ankle from a year earlier started created pain in my knee so we did a walking boot, physical therapy and eventually surgery in April. They did a svydectomy and removed some bone spurs.

Unfortunately, I'm just not healing. I ended up having to use a cane for a while and the pain is worse than before the surgery. Now, my knee hurts all the time and they think there may be a cyst. My muscles throughout the leg have knotted  up and are in what feels like constant spasm.

Now my neck, which showed a slight bulge between vertebrae two years ago and has caused headaches and trap spasms on a continual basis is worse than ever. When my neck cracks it feels like a zipper that's one notch off.

I hardly have an appetite and have to force feed myself on most days. I'm severely depressed. I'm  only 27 and I want my life back. I want to know why my joints and muscles are in constant pain. I want to stop it from getting worse. Please give me anything you can. My doctors are focused on one area at a time and aren't seeing that I've had two surgeries in less than a year and am only getting worse.

[Sarajmt]

I am so sorry.  You are way too young for this.  But you've come to the right place for advice and support.  Our community of chronic pain patients give wonderful support to each other and offer advise.  Unfortunately we are not monitored by a doctor.

As I'm not a doctor, I can't diagnose you.  But the first thing I'd do is to consult a neurologist or an orthopedic surgeon.  Along with this, ask your doctor for a referral to a Pain Management Physician (PMP).  They can do all sorts of wonderful things for pain.  They use different procedures, shots and medications to get you back on your feet.

Now about that depression.  Chronic pain and depression walk hand in hand.  There just doesn't seem to be a way around it.  I'd suggest a therapist who is trained in providing therapy for chronic pain patients.  If you can't find one of those near you, see if you can find a therapist you like.  Either would help but the pain therapist has training to deal with pain patients.  An antidepressant might be prescribed for you by a doctor.

What are you doing now for your pain?  I have bone spurs in my hand and had them in my neck.  Got a fusion for that.  So I do sympathize with you on those painful little buggers. If you don't have narcotic pain meds or don't want them, you can try all the OTC meds, acupuncture and herbal remedies.  Most reputable places like GNC have employees who are highly trained in herbal treatments.

I am really sorry this is happening to you.  You are just too young to have to go through this!  There aren't many members around right now but hopefully some will be on later.  And tomorrow it should be hopping.  So do check back.  Someone will come along and give you better advice than I.

Again welcome.  Please keep posting and check back for more responses.  I think you will feel right at home here.

Sara

[BabeRuthk]

Sara, you're an angel. I saw my primary care physician today to address the depression and for ANY insight on the big picture of WHY this is happening. I'm currently seeing a pain management doctor but they seem to differ to my orthopaedic surgeon. My frustration has been with the process of treating one joint at a time rather than stopping to look at the fact that a 27-year-old is suffering from these issues. The good news is that my primary care started me on Cymbalta (do you have any experience with it?) and referred me to a rheumatologist.

I had no idea that depression is commonly linked with chronic pain. It makes sense. I think, because of my age, I don't have anyone to talk to about the chronic pain (which is why I thought giving this forum a shot might be worthwhile). I just feel like my life has been robbed by this pain.I can't do the most simple of activities. I mean, is it so much to ask to want to wear high heels?

My pain management physicians have me taking a narcotic reliever and an anti-inflammatory.

A lot of my family and friends act either indifferent or gossip about it. Some shuck it off as a 'toughen up' type of remedy. So, I stopped talking about it and started internalizing it. It's often times felt like a very lonely road.

Did you end up having surgery? Did they explain what caused the spurs?

Thank you for taking the time to respond. I guess I'm just as interested in talking to someone about it as I am finding out why it's happening.

I can't thank you enough for responding.

[jamlws]

I just wanted to telll you I am so sorry your in so much pain and so little answers. People with Chronic pain do deal with depression cause we are always in pain and always looking for answers or treatment so we can get our lifes back. It is hard to watch everyone living their life to the best they can when we sit and try to just get better so we can live a somewhat normal life. I have heard that Cymbalta works for some people. A dr has given it to me but I just haven't started it yet. I just dont want to start another med until i finally see my pain dr and see if it is ok to start it.
I wish only the best for you and that you get some much needed answers.
Jamie

[Sarajmt]

Hi NorthK:  You're welcome.  But as you get to know us better, you'll find that we have a great community here.  We understand all the awful consequences of chronic pain all too well.  About your family and friends, make up your mind here and how that they will never understand.  This condition is one you have to be smack dab in the middle of it.  Oh and I do understand about the high heels.  That would be very depressing!

I take Cymbalta.  I like it. I can tell a definite difference with and without the cymbalta.  I hope it helps you. It sounds like your PMP is on the right track with you.  This is not fair but many doctors have a problem treating those who like you are very young and in horrible pain.  I don't really understand it.

About the bone spurs:  I had to have a fusion in my neck to get rid of those but unfortunately because of insurance issues, I didn't get a fusion for the other discs that needed it.  I did get function back in my hands after the fusion but I was still left in pain.
The pain from the bone spurs was gone and that was good.  As for the ones in my hand,  I get injections and use 2 medications especially for them   One is Voltaren gel and it does a great job on small bones like the hands.  Spinal use is still undetermined.  The other one I use is Arthrotec.  This works well on my hands and neck.  Those of us who can't use NSAIDS can use Arthrotec.  It's definitely not for everyone and you do need a prescription for it.  I also use Lidoderm patches.  Basically they're numbing patches.  Good for my hands, neck and sometimes abdominal adhesions.  I hope you don't have those!!!  But no worries for you on that one.

If you would like to talk to others in your same boat, please stick around.  We have so many wonderful members.  As this is a Holiday weekend, it may be sort of slow.  But you can find a lot of support, advice and answers  here.  You can also make some very good dear friends here.  I have.  We do not substitute face to face interaction, but we're the next best thing.

Many of us have become socially isolated because of our pain.  It's not that we don't want to maintain the friends and activities we used to do.  It is just that we can't do it.  Friends don't understand and pain levels go up and down making shopping trips, dinner out and other things we used to enjoy impossible to schedule.  We can only do it when pain levels allow.  So this forum has offered us an outlet for it.

Please stick around.  And ask about the things bothering you.  Feel free to chime in on any topic you wish.  The more the merrier!!

Sara

[melissaky]

Hi and welcome ! You are so young to be in so much pain .I feel so bad for you .I also had shoulder surgery last Sept for bone spurs which had torn through my rotator cuff.At first I thought I was healing up good but it seemed like that surgery opened up a can of worms because I ended up with several things going on .I found that I had bulging discs in my neck ,bone spurs and severe stenosis in my neck .One Dr thought I may have fibromyalgia  as well .Then at the beginning of this year I was hospitalized for what was thought to be Crohns .It's weird when you fix one problem and more start cropping up.I really hope you start feeling better and they get to the root of your problem. I am way older than you and I know how it's affected me .I think everyone in chronic pain suffers to some degree from depression .It's really hard when you can't do what you used to do .And living in pain is the pits.I'm glad you found us here and hope you continue to post.Please let us know how you are doing .Take care Melissa

[mellie4]

I just wanted to say welcome as well.  This forum is a God send for me.  I use a lot of the things Sara does as well.  I take Cymbalta, too.  I'm not sure if it's really working on the nerve pain all that much, and I wish it would work a bit better on the depression.  I'm on a bit of a rollercoaster with that these days.  But this forum has helped so much with that.  I use the Lidoderm patches, too, and I love them.  You can cut them to whatever size or shape you need.  I was using the Voltaren gel and I found it helpful.  Recently they tried another gel/cream.  They call it a compounding gel as it's made up by your doctor and you have to get it at a special compounding pharmacy.  Mine has about 7 different medications in it, among them lidocaine, ketamine, and I forget what else.  I find it works a bit better than the Voltaren gel for me.  I also have a Fentanyl patch, which I just got a couple of weeks ago, and I really like it.  I take oxycodone for breakthrough pain, Clonidine for nerve pain, Ambien as needed to help with sleep.

People don't understand.  I think it's hard for them.  If they see you in a cast, they get it.  If they can't visualize it, they just don't.  I know my sister thinks I'm dramatic or exaggerating.  Sometimes I wish she could try folding one load of laundry with hands like mine.  Or taking a big heavy roast beef out of the oven, only to drop it on the floor.  I've given up trying to explain.  My kids are pretty understanding about things, thank God.  I can't do all the things I used to be able to do.  Having this forum, though, helps because everyone here does understand.  There really is nothing that you've experienced that someone hasn't already gone through.  It's definitely kept my sanity.

I hope you'll stick around and share your experiences.  I've learned so much since finding this site.  I really don't know where I'd be if I hadn't come across it.

[Tuckamore]

Hello Northk,

Welcome to the Pain management Forum. I am so glad that you found us and took the time to share your experience with chronic pain. We all know to some degree what you are talking about and what you are going through. My heart goes out to you. You are so very young to have to endure these multiple areas of pain.

Try to ignore the ppl don't understand what you have gone through and are going through. They just don't get it, indeed they cannot understand. Do we have any idea the challenges involved in climbing Mt Everest? I certainly don't. I think out journey through chronic pain is like climbing Mt Everest without any training!!! So forgive them their ignorance. I have kept the copy of the letter(s) written to ppl without pain. It's been placed on this site numerous times but it may bear repeating again. I'll post it for you.  

Have you been evaluated by a large nationally recognized clinic or a large teaching hospital, usually connected to a university? If not I encourage you to request a consult. A multidisciplinary medical team sounds like just what you need. At 27 you should not have multiple sources of disabling pain. At the very least you deserve proper pain management and some answers to your questions.

I too have taken Cymbalta. It relieved my depression but I soon felt nothing. It took all my emotions away. I had no desire to join in a conversation. I just say quietly allowing those around me to converse. I heard every word they said but my mind wandered here and there. I smiled when someone spoke directly to me but that was about it. I suddenly realized I was on another planet. I saw my PCP and she quickly weakened me off Cymbalta. I returned to my usual self without depression.

Yes depression goes hand in hand with chronic pain. We often experience what is called situational depression. Depression and stress honestly makes pain levels increase. It's not a theory, it's a fact. Cymbalta is a good medication. It has been the only antidepressant that I have been able to tolerate without menacing physical side effects. It did work quickly for me. I think it just worked too well. :)

I don't know the reason's you are having multiple areas of pain. It could be that you have an underlying causes like Fibromyalgia or Myofascial Pain Syndrome. I agree with you and I do think your body needs to be looked at as a whole instead of treating it section by section.  

Be assertive. You are your own best advocate for proper medical care. Please stay with us and become an active memeber of our community. We are a supportive and information forum with many understanding and caring members. I will look forward to your updates. Please take care.

I'll post that those letters. Maybe they will beneficial to you.
Peace,
~Tuck

[Tuckamore]

I have given this letter to the ppl that are important to me. The author is apparently unknown. I have another that I will post also. Both are lengthy but say so much.

~Tuck

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.


Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

[Tuckamore]

Here's the other letter. I also provided all those that I love with a copy of this one. They told me it helped them understand my situation and challenges better.

~Tuck

TIPS FOR DEALING WITH PEOPLE IN CHRONIC PAIN

1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

Author unknown

[BabeRuthk]

Wow. I really can't tell you all what a comfort it's been to read all your comments.

Sara- I'm so sorry to hear about your neck. That sounds awful. I tried Voltaren for a bit as well and it used to do wonders for my ankle but not so much now.

Melissa- It is weird that sometimes it feels like your body really is unraveling or popping open a can of worms. I know someone who just had a surgery to reduce any further complications from Crohns and, while it was a brutal surgery, he says he feels so much better than he has in years. Is that an option for you? What caused your rotator cuff tear?

Mellie- I hope you can start taking something else for the depression. Or perhaps up the amount? I really had no idea that it was so common. It's funny (or I guess it isn't) how depression is taboo. I really can't stand the buck-
up attitude. It really only makes you feel worse. I'm glad you have your kids as support too. My boyfriend has really made a great effort through all this and I can't imagine how insulated I'd be if he weren't in my life.

This forum offers more though. Sometimes, I just don't want to tell him how bad I feel. I just hate
having to share that burden. You all unfortunately
know what chronic pain is like and how can affect every aspect of your life.

Tuck- thank you for you kind, welcoming words. I suppose you're right. That it may be better to just accept that people won't understand. I hadn't ever really thought about a university team. How do you go about that? I'm seeing a rheumatologist this week so I guess I'll see how that goes first. I know I need to be more assertive. I've struggled with that in other areas as well. Thank you for sharing your letters with me. It seems like it may do the trick for some people in my life. Others, like my boss and coworkers I'll have to just accept their indifference. Although, it is so trying to be mocked for my injuries. That place is only adding to my misery in that sense. I just need a source of insurance while this is sorted...

Thank you all again for your supportive words. I'm so glad to have found this outlet. I hope to continue to get to know you better.      

[Sarajmt]

I'm very glad you decided to join us.  You can talk to us 24/7.  Just jump right in.  The only time I talk about my pain around family or friends is when it's necessary to explain why I won't or can't do something.  No point in speaking of it any other time.

I use Voltaren on my hands.  It's not really for spinal pain.

So do plan to stick around.  We really want you to stay with us.  All the experience and wisdom of others is always a boon for the forum.  As many of us have become socially isolated, this forum provides a great outlet.  Social isolation is also a problem with us chronic pain sufferers.  So, welcome again.
Sara