Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

2,903 Members
21,876 Posts
0 Online
Brain & Nervous System
/ Chronic Pain Support Group

Mobility getting worse.

blizzard2014
blizzard2014

I've been having a hard time with the bad leg lately. It's starting to have worse pain and it is no longer able to function for 4 hours at a time without ripping pain developing in the back of the thigh and in the calf. Also, both legs are weak and getting weaker. I had a blow out with my former pain doc's NP and decided to discharge myself. I detoxed off all pain meds and I was doing really well for 3 months. There were countless work days I didn't even need a pain pill to perform the job, even on the hard 4 hour job on Monday. Then things started getting really bad and 3500 mgs of Tylenol was no longer working for me. It's now back to where I have to take 1 Norco to work on Monday, and one after I get home. I take one on Sunday night too. Then I stay on the couch elevating my leg the other 4 days to control the pain. The pain is still there, I just bare it and prevent flare-ups by not using the leg at all. I had an easier life taking 3 Norco's a day, but I do not want to be dependent on them anymore. The new pain doc is trying some new things. She is trying Gabapentin again, and a new muscle relaxer called Baclofen. She wants to send me to physical therapy. I want to try physical therapy too. But all it took for me to go into a flare on Sunday was to walk too fast on one job site.


Walking too fast, too far, bending too much, or using the brake pedal too much while driving sends the leg pain and dysfunction over the edge. I'm hoping that at least the physcal therapists can document how dysfunction I really am. If they put me on a recumbent bike for 5-20 minutes, they're gonna be wheeling me out of there in a wheelchair. At least they can document this. That it takes 5-7 days of compete inactivity to get the little leg strength I have left to come back to 100 percent. This new doc is not one to prescribe opiates, but she agreed to give me 15 Norco's a month after the second office visit. I can manage with that, even more so if I quit my Janitor job. But the idea of another 8 years of living life with my leg elevated to prevent pain is not doing my mental health any good. They're sending me to a third vascular surgeon after a few months ago, another one told me they cannot operate on me and that the pain and swelling is for life. Then they discharged me immediately. This is like an 8 year long nightmare. I was getting ready to try and drive again and make money again. I have credit now and all ready to do it, but there is no way I can drive in this much pain.


I have never had this much trouble with the leg. I even need a pain med after a 2 hour visit to the doc's or from going grocery shopping. It's like my progress is going backwards. My INR is high so can't be clots. I also have a huge bulge behind my knee when I walk and a bulging vein that looks like a balloon that is about to pop. It's like the circulation is blocked. I hope some of you are doing better. Do you think physical therapy will document my disfunction and then discharge me if they can't help me?

blizzard2014
blizzard2014
Sorry for the long rant. I am always full of hot air. I forgot to mention that taking pain meds is no longer improving my leg function. It used to make it possible for me to work like a normal person, now it sometimes does nothing at all for function. It helps on Monday, but not to restore function. I cannot even bend down to pick up the heavy trash cans. I'm actually hurting my back because I am having to lift heavy trash cans and heavy mop bucks to empty them out with my back. If I bend, I will not be able to finish the job. I also have to walk slow, sometimes holding on tight to the mop as it is locked into the mop bucket for support. I have to go extremely slow like an old man or else leg will cramp up and lock up. So the pain and dysfunction is now in complete control. There is no fighting it and I'm not gonna try increasing pain meds to bring the function back. Norco every now and then is it. It's time to just let the leg do whatever the heck it wants to do.
patti22
patti22
I'm sorry for the pain that you're in.
lilmissy7
lilmissy7
Don’t be sorry for the rant, being in pain can make you feel like you’re loosing your mind, I understand.
And when I have mobility issues it makes me feel trapped. I deal with severe pain & I have mobility issues with different parts of my body due to severe trauma.

Sending you much support
blizzard2014
blizzard2014
What really frustrates me is that I do not have severe trauma like a lot of you guys do. I don't even have nerve pain. I have circulation issues and no one in the darn medical field recognizes my condition as severe. Only a few specialists I have read about equate having post thrombotic syndrome to being a cancer patient on Chemotherapy. I don't know if you also have to have open wounds to qualify for that kind of quality of life comparison, but it can be bad and there are no real ways to test for it other than to show that you have blocked deep veins and swelling. As an example, I have hair growing on all of my toes on my left foot; but after extensive DVT, no hair grows on my right toes. That is one example of an observable sign that the circulation it jacked up. If I stay with my leg elevated 24/7, I can get by with very minimal pain meds. But what kind of life is that? Are there even any office type jobs where you can sit with one leg elevated like you're on a recliner? I'm just frustrated and tired of fighting all of this stuff. Yesterday at work, all was fine until I had to bend down a few times to pick something up off the floor. That aggravated the leg and the ripping pain came and ruined the rest of the work day. It feels like you're being held hostage in your own body. It's like a never-ending nightmare. Thanks for listening Patti22 and Lilmissy7. I hope you guys are having a good day today.
ItsJustMe2012
ItsJustMe2012
What back issues do you have ? Have you had a MRI of your back/spine ? The pain you are having now could be a combination of old issues with you leg and new or more severe ones with you back.


I understand not wanting to depend on pain pills to be able to function. But if you cannot walk due to the level of pain. I can assure you pain medications are better than having to depend on others to do your grocery shopping, prepare your meals, clean your house, help you shower, etc.

Depending on pain medication so you can function well enough to do the basics. Is totally different than being psychologically (addicted) to pain medications.

You need to be prepared for your pain level to increase after you start physical therapy. If your doctor's say they cannot do anything to increase you ability to function and lower your.pain level. You might have to consider filing for disability. If you have to lay or sit with your leg elevated. I do not think a desk job is reasonable. Unless you can find some type of work you can do from home. It is easier to elevate your leg at home than in the work place.

If you are over the ideal weight for your height. Losing weight could lower your pain level and increase your ability to function..

How many specialists have you seen about your leg ? It is always a good idea to get a second and maybe third opinion. Especially when the condition continues to worsen. If you have Medicaid. It may well be worth it to see a private specialist. In most states Medicaid providers do not offer quality care.

You might need a stronger medication than Norco (Hydrocodone, Acetaminophen). I assume you are taking Norco 10. If you are you
might want to talk to your doctor about Percocet (Oxycodone/Acetaminophen) Percocet is a little stronger than Norco Do you take 3,500 mg Tylenol over a 24 hour period ? Be very careful with the Tylenol. It is easy to take too much. Especially when you are taking other medication that contains Tylenol. The signs of too much Tylenol do not show up as quickly or clearly as with other medications. Tylenol has a cumulative effect.
blizzard2014
blizzard2014
Itsjustme, the pain meds are no longer able to increase function for me. They used to allow me to work 4-5 hours a day five days a week in an even more physically demanding job. Now, taking some meds on just work days is barely enough to allow me to complete the four hour work day as long as I work at an extremely slow pace. I also drive 40 minutes one way for the weekend jobs and using the gas and brake pedal do me in pretty good as well. I had a better week this week and was able to bend down and lift all of the trash cans with my legs, but the week I wrote this OP was a horrible week. It was really bad and it will get bad again.

I did take pain meds on Monday, for the hard job. But it wasn't like 2 weeks ago when I had to have meds just to start the job. The meds helped, but they did not make me able to go faster or do anything beyond my capability. Once I got home, I was doing some laundry and my entire leg was about to lock up from butt all the way down to ankle. I took another med and elevated my leg for the rest of the night. Why go on stronger pain meds when they will not allow me to stand longer, walk longer, or even bend more. I have Methadone here I can take and it is not going to make me function any better. Tolerance is not an issue anymore as I only take on average 3 Norco 10's a week. I take one on Saturday night and 2 on Monday, the day when I have the hardest work. T
blizzard2014
blizzard2014
I got cut off. That's it. There is no reason to take the meds on my days off as I mitigate pain by elevating my leg and laying in bed. If it hurts too much to stand up, I just eat pre-packaged food and stay off my leg. It's much better than taking 3-4 Norco's a day. Plus, current pain doc does not prescribe anything more than what she is comfortable giving me, which is the 15 Norco 10's a month. The other pain doc was slowly cutting back as well. I used to get 110 pills a month and that was 4 one day and three the next day, then they cut me without notice to 90 and no more long acting meds. They were always questioning me condition and sending me to specialists who kept telling them there is nothing that can be done for me. The same with this doc. They don't deal with circulation issues at pain management much. Mostly back issues. I have had MRI of upper and lower spine and only thing it shows is general disk desiccation in the neck. I do not have back pain from back problems. Now I do get back pain from my kidney and sometimes when I am backed up with food as I get backed up a lot, but it is not from spinal issues. My leg pain is not from spinal stenosis as there is none on MRI. Of which I am glad. I do not want any back problems. You guys go through heck with back issues. So, these pain doc's cannot fix me and they get frustrated and then want to discharge me. I want discharged too to get my 15-20 Norco's from GP every few months, but my GP no longer writes scripts for pain patients. Too many doctors are getting arrested and locked up around here. The fear is in them. So, I hope the physical therapy can give me an idea of what can be done. I am open to anything. But if I haven't been able to climb stairs for 8 years, I don't see how they will fix it. I have to use my arms not. I grab the railing and pull up each step by step with my arms. I'm scared one day, the rail will bust from all of the abuse I've been doing to it for 8 years and I will fall. If I do not do this, my good knee is getting overused and will go out on me. It currently does all of the work for both legs. All the climbing, all the getting into and out of cars, on toilet, everything and it starts to hurt too sometimes.
blizzard2014
blizzard2014
These pain docs want to do injections, nerve bocks, and prescribe anti-inflammatory medication. I want the anti-inflammatory meds and the injections. But they won't give me the meds or even go near me with any procedures because I'm on blood thinners. They even freaked out when I told them I keep my INR above a 3.0. They think I'm just going to bleed out at a moments notice. At least they're going to look up my disease. Antiphospholipid Antibody Syndrome. After they do some reading, they won't argue with me about the INR any longer. No one documents this stuff. My GP brushes me off and says ignore the pain. It's kind of hard to get disability benefits when the doc's don't want to help. No one can see how hard it is to live like this. I hope the physical therapy will see this and document it. I am unsafe even at work. When I climb ladders I am extremely unsafe and also on stairwells. Sometimes I shouldn't even be on the road because I get dizzy and have to really pay attention to what I'm doing. But no one is going to pay my bills for me, so I do what I have to do.
blizzard2014
blizzard2014
I unleashed. I was having a bad day yesterday and I fought taking a pain med all day and all night. Had horrible sleep with a throbbing leg and then fought all day. Finally took a Norco 10 and feel a lot better.
hippyone
hippyone
blizzard2014 I have APS Antiphospholipid Syndrome. I found out through my labs done by Rheumatoid doc. This year I found through gene testing I carry the MTHFR C67TT gene which can put me at a greater risk.. At this time I have only suffered a surface blood clot which was very painful. It woke me up in the middle of the night. Eventually that clot turned into a varicose (big) left leg. I have more. Many broken veins. Hair doesn’t grow on that side of my leg either. I wear support socks (blac) from Walmart. I have some nice expensive ones decorative in different colors but I find even when laundered in cold water they eventually stretch.never dry. Walmart carries these in men’s sizes as well. The pain relief incredible. Ice pack good. So Walmart cheaper and you replace often.

Look up APS it quailed for disability. Have they ever had you on an IV to try to dissolve the clot? The lab is IGM Cardiolipin AB and should be run 2X once and followed up in two weeks. Also recommended is test for lupus sle run along with it in same fashion 2X.

Good luck. I know you are frustrated. You need better doctors.

Blessings
Hippy
blizzard2014
blizzard2014
Hippy, only catastrophic APS qualifies for disability. But fifty percent of people do not survive catastrophic APS. You can however quality for the venous insufficiency, but you have to have open wounds on your legs. The APS is a crazy disease. I never had any symptoms except burning in my legs when exercising and then one day all clotted up from a sprained ankle. I even had a 12 hour surgery and did not have an issue back in the 80's. My pain has been much better since I posted this. I was in horrible shape when I posted this and that was around the same time I visited my new pain doctor. I figured out what was happening. My INR was bouncing back and forth every week from 3.0 to 2.0, almost the same thickness as a normal person. I think I was having circulation issues from it as my leg was swollen at the pain docs. I upped my meds and have an INR of 4.2 right now and will leave it there. That is insanely high, but not for an APS patient. There are people who throw clots on a higher INR. It literally works better than pain meds to have INR severely high. Once clots are old, they can no longer be broken up. What they do is turn into scar tissue that is web like. The very strong web-like chronic clot pulls the vein closed, or in my case makes the opening very small. They have to use a balloon as powerful as the PSI in a car tire to even move a scarred vein. It can even pop that balloon before they get a stent in there.
blizzard2014
blizzard2014
Hippy, what was your antibody titer. I have Anti-Beta Glycoprotein 1gG antibodies and also tested positive for Lupus Anticoagulant. My Titer levels were 98 positive (very high positive) six months after clots and 2 years after that test, they were still 85 positive. They labeled me a high rick for recurrent thrombosis. The high titers along with a Factor 2 mutation and chronic clots. Doc said new clots would build on the old one within a week of discontinuing blood thinners. That is when the raised my INR to 3.0 to 4.0. To be kept above a 3.0 at all times. That means I meat the laboratory and clinical criteria for APS. Two positive lab tests at least 6 weeks apart, and one major clinical event. Please keep an eye on yourself because this disease can be more active in those who have SLE. It can also attack the kidney's. The worst case scenario is Catastrophic APS. That is where you throw clots to multiple major organ systems simultaneously. It has a fifty percent survival rate. I just live every day like it is my last. This APS disease can get to you even with an INR of 4.5. That is because unlike Factor 2 which is genetic, this disease is autoimmune. Once your immune system goes into hyperdrive, it can override the Warfarin. The only way to survive is to get chemotherapy. The entire immune system has to be knocked out, thus killing all the APS antibodies. So, even on thinners, the reaper is always lurking. I hope you feel better. It's not good having all these disease's.

You should please go to healthunlocked sticky blood Hughes Syndrome support group. There is a lot of good information on there. Dr. Hughes is the doc who discovered this disease back in the 80's.
blizzard2014
blizzard2014
From my understanding, cancer and APS are some of the only things that can override Warfarin and cause clots even while in the therapeutic range.
Hangingonadayatatime
Hangingonadayatatime
If your pain is impacting your daily living to this extent I suggest that you apply for Disability, and do it sooner rather than later as it generally takes up to 2 years to process. You can get Disability for more than just physical conditions. As a matter of fact, it is easier to get approved for Disability under Mental Health issues as opposed to physical conditions. No doubt you are suffering from mental duress with all of this- who wouldn't? Your lifestyle has been significantly impacted! Look into this and beware of the Disability lawyers- they will jump on you as soon as you make your initial inquiry! It tool awhile but I got Permanent Disability on my own although plenty were will and asked to take my case as they get a substantial cut in your claim. I am sorry for your pain but can relate! All the best to you now and always!
blizzard2014
blizzard2014
I do suffer from mental duress. I also have had mental issues for years. I literally spent a 1 month period of time where all I did on my days off and nights off was research different methods of suicide. That was 3 months back. I had dread and doom so bad that it was literally burning a hole in my stomach. I will not see psychiatrists though because I already take enough medications. I don't want to be dependent on more meds. Social security should not be easier to get for mental health disorders. Some people have to over-state their mental disorders in order to win benefits. It should not be that way. I actually have to work jobs where I am alone. That is how I work around severe anxiety and social anxiety. before my accident it used to be truck driving. Now it is cleaning empty buildings at night. I found way to function. For me, just knowing I have the option of suicide actually provides me with an immense sense of peace. It is therapeutic. I tried to see a psychologist and was bashed and they told me I was a professional at playing the victim. I got so mad I was mad for an entire month. I don't need anyone else up in my business with a magnifying glass ever again. I prefer to stay alone. I'm just gonna push and push until my conditions get bad enough to straight out meet a blue book listing. It is going to happen eventually.
Posts You May Be Interested In