Post Edited (Pamela Neckpain) : 10/26/2008 2:41:03 AM (GMT-6)
((((((((Gabby)))))))) Hugs for you! I know, as well as many of us here know exactly how you feel. We can't all know what your specific pain feels like, but we know what it is like to have chronic pain and what it can be like to try to deal with it. And with that, we are all similar, so you are definitely not alone in your feelings. It's perfectly normal to go through the feelings you're going through. Usually there is sadness, depression first, then after some time, there may be anger, like why did it happen to you? Sometimes people take that anger and use it to their advantage, such as doing extensive research and becoming your own advocate for treatment. Actually demanding that doctor really research your problem and help you try to find a resolution. It really is such a see-saw of many emotions one goes through. But again, it is perfectly normal. After the anger, then one may begin to fight back and take control of their health. Find doctors that will work with them and demand a diagnosis and help with treatment. Beliieve it or not, there are doctors out there that will work with you. I have finally found great Pain management that seems concerned and works with me to works with pain management to adjust meds to help me the best.
I know how it feels to have an "invisible illness" and when people in general think you look great, when indeed, you are actually suffering inside. I've heard it all myself. I look so good or what really irks me is "you are too young to have those problems". The general population just does not understand that anyone of any age can suffer through chronic pain, including children. Just look at Juvenille Rheumatoid Arthritis and cancer. People just don't understand unless they've gone through it themselves. If they've gone through it, then they have empathy.
I've not experienced what you have and cannot even imagine having that pain while swallowing and not being able to eat normal for so many years. People take those things to their advantage. Normal people just don't know what it's like to have to change so many facets of one's life just to exist.
I don't know if you've ever heard of the "spoon theory". If not, it was a story someone came up with that suffers with Lupus, however, it can apply to anyone with chronic pain or "invisible illness". A woman came up with a story to relate to a normal friend about why & how she cannot do normal things. It's really a good read and a great story to print out and give to friends and family. It might make them think twice about what you are going through day to day. And they even have t-shirts and such with sayings on them. They have some great ones with perfect sayings on them! Something like this might give you some personal empowerment over your condition.
I know how frustrating it is not to find any answers. I have a great spine surgeon, but I now have alot of scar tissue buildup which is causing me problems, though he thinks some of my pain is due to my hips, which have gotten worse over the past year and 1/2. When I went to the hip specialist, he said i might have a spur in my right hip, but didn't think that was causing all my pelvic girdle and low back pain. He thought it was my spine. I've had ongoing pain, inflammation, and problems in my right ankle for over 18 years now. The podiatrist didnt' know why, but I had multiple cortisone injections, aqual therapy, various anti-inflammatories, etc....and nothing helped. Then 18 years later, I had a bad flare, saw a new Podiatrist, he actuallly sent me for x-rays (which showed nothing), then an MRI (which showed extensive damage to my ankle, which looked like I jumped off a building). I have severe arthritis, edema, and extensive tearing of a tendon. I also have bone death on my ankle bone, though I never actually injured it. So I was fitted witha custom brace and that alone keeps alot of the pain under control. If only I had this brace so many years ago.
I have been through the depression and the 'why me' and the anger, but after so many years, I'v come to accept my issues, though don't ask me how. I've had to adjust things I do and there are many things I can no longer do, but somehow I just live around the obstacles. Your situation, however, is a bit different, in that it's affecting how or if you can eat, which is definitely not a good thing. I would say keep on trucking and though I know you've been to numerous doctors about your condition, please do NOT give up! You are your own advocate; it's your body and you have to live with it and you deserve to find out what is wrong and deserve a doctor that will work with you. So if possible, find yet another doctor. Tell that doctor exactly how your condition is affecting your life and tell them that you need a doctor to work with you and if they can't find a resolution, ask them to refer you to another specialist.
In the mean time, lots of hugs to you and I hope somehow our posts on here make you feel a little better somehow.
Thank you all so much for your replies. Thank you for caring and thank you for understanding. Today has been a not so great day, I am honestly scared to eat anything anymore, I am back on liquids like protein shakes and other things, even though that does not even solve my problem but I am willing to try anything to get some relief from this unending pain that seems to be getting worse and worse. I am sorry you all are suffering as well. I know my pain is different but I can completely empathize with each of you, in that we are all tired of suffering day in and day out. I am now back at work and it is very difficult for me to work especially since i usually don't eat most days, so I get dizzy. But being dizzy is better than being in agony. I haven't lost too much weight which really doesnt make that much sense to me since I never really eat much. But, again thank you for your replies I will continue to post here on this board. God bless all of you
Hi skeye...so sorry to hear about your eye condition. What exactly were you diagnosed with? I have pain in my eyes too but its from the nerves from my throat firing up there. That must be awful having to live with what you have, and I truely hope you get some help. I too have a condition that is very hard to treat. I completely understand the frustration in trying to get well but you just can't. I too can understand of wondering how you are ever going to make it through the day. Its such a horrible way to live but Ive been living this way for almost 3 years now. I would do anything or give anything to be healed of this horrible affliction. How long have you had your eye problem and what do you take for pain?
Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.
Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)
Past Meds: EVERYTHING. Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.
Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)
Gabby, if your pain is mostly esophageal, have you ever considered having a feeding tube placed short-term (maybe 4-6 mos.?) You would have to have blenderized meals or special protein drinks poured into it, but it might be a way for you to be able to heal without having to eat orally. They do this for people with throat cancer who are undergoing radiation (it burns the throat horribly.) Just a thought.
I hope something can be done to relieve your pain.
Hysterectomy at 25
4 laproscopic surgeries since 24
Cervical stenosis in C3 & C4
Meds - vicodin : nexium : xanax :
Supplements : calcium : magenesium :potassium : milk thistle : fish oil : B complex : vit E
In the United States today, there is a pervasive tendency to treat children as adults, and adults as children. The options of children are thus steadily expanded, while those of adults are progressively constricted. The result is unruly children and childish adults. ~Thomas Szasz
Post Edited (moondancer) : 10/28/2008 3:33:53 PM (GMT-6)
Thanks for replying so quickly. Yes many people here are in so much pain, and as I sit and read more and more stories, I see I am not alone. I guess I was in a bad place yesterday, and felt sorry for myself, as I am sure we have all done. actually I posted on Arthritis forum yesterday and not CP. Yes my Dr. said Phsyciatrist, I have been taking Prozac for many years because of the pain. But he does not want to give me pain meds, he is a fairly new and young doctor, so I understand. Like I said I am going to a rheumatoligist tomarrow and hope they can give me some help. I have taken pain medicine off and on for about 20 years and have NEVER let myself become addicted. ( I know that is most DRS. fears) But when your quality of life seems so poor the pain meds become your only relief. as I read on, I am not so lonely any longer. Many people with pain worse than mine and for them I will pray and for you also.
Thanks for the ecouragement