Hey everyone. I have been quite active in the last four months. I landed a part time job as a Janitor with a company that decided to take a chance on me despite my multiple medical ailments. I was honest with the interviewer up front that I might not be able to perform the work but that I would give it my best try. They initially told me that I didn't have the job after me shaking hands with the manager and them telling me I had the job. What happened is that the other guy they hired didn't show up for his first day of work and my manager had to fill in for him. I got a frantic call the next day begging me to come to work. I sat around the house for 6 hours dreading whether or not to show up to the job. I did and it was hell to get through that first day. I could barely walk after standing up for four straight hours. All I did on that first day was clean two bathrooms and change the trash can liners on 200 individual trash cans. The building is huge and I had to walk all over the place hunting and pecking for the trash cans. I even missed a few.
Well, fast forward to four months on the job. I am still sore and sick and tired non-stop. I still limp and am barely able to walk after my 4-5 hour shift. I worked one night a full 8 hours when my lazy co-worker decided to quit 2 hours into our shift. I did it as a favor to the boss and to see if I could handle it. I handled it, but at great cost. It was after that 8 hour shift that my bad DVT leg swelled up big enough that I could barely get a shoe onto that foot. I haven't had my leg broken like that for four years. I had to buy a 20/30 grade medical compression sock to reverse the swelling. Even with the sock, my leg does not swell, but my ankle swells after my shift. But without this sock on, even pumped up on pain meds, I would not be able to do this job. I might quit at the end of the year after I have saved some more money, but I feel so accomplished to have moved from the couch to being productive again. I just won't get any better.
You would figure that with exercising every day, my entire body would get used to it and I would not be sore and beat up anymore. But that's simply not the case. I have muscles in my legs again and my arms are hard as a rock from all of the mopping and other tasks I perform. but my stamina has not gotten any better. I still can't climb the stairs normally and if I walk too fast I will start to limp. I also would not be able to work without pain meds. I literally wake up in pain/soreness unable to move until I get pain meds into my system. My pain doctor doesn't think I will be able to keep this up for the long term. He offered to write me restrictions for my employer, but I told him that won't work as the job is physically demanding. I clean half of a 43000 square foot building that consists of offices and large production areas. I have to force myself to go to this job each and every day but it is to me a fight for my survival. If I quit and go back to living on the couch again, I may never find the motivation to get out there and try this ever again. My last INR was 3.0. I have been having a lot of problems with my blood pressure being normal one day and off the charts high the next day. I take Clonidine and Lisinopril for this and it works for now, but every couple of weeks I need to change meds to keep my BP under control.
I was on amlodipine, but it caused my good leg to swell up due to edema and has since cleared up now that I stopped using it. All of these meds just stop working out of the blue except for the Clonidine. Now, sometimes I need to double up on the Clonidine because my body is resisting it, but it never stops working. I was up to 60 mgs of Lisinopril before the Clonidine and it was not even lowering my BP at all. Any normal person would pass out from that much Lisinopril. I worked three days with a BP of 190/125, but it was normal once I went home and sat down. If I stay seated all day, my BP will remain normal. I just can't stay seated anymore now that I have this job. Any how, what do you think about the chronic muscle pain. I always have leg pain from chronic DVT's. But this soreness is everywhere, from head to toe. It only gets better after 2-3 full days of laying in bed, or sitting on the couch. If I even go to the super market on my day off, the soreness will intensify. Any advice would be greatly appreciated. J
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Hello, first of all congratulations on doing your absolute best with all this. My fist question to you is when did you last have your vitamin D checked? If this is low you will have pain and worse fatigue, also your Thyroid, plus B12 and Iron, all of these issues would have bearing on your situation if not adequately managed. MaryF
I had all that checked and all is normal Mary. I take 5 thousand IU's of Vitamin D daily and Magnesium, Potassium, and Calcium for the muscle cramps. If I work more than 5 hours, I literally wake up with my DVT leg cramping up so bad that it is almost unbearable to stretch it out straight. It takes me time to work it so that I can get out of bed. That is when I really overdo things. My grandmother had Hashimotto's, so maybe my Thyroid changes too fast to detect a problem. My Vitamin D was low at 19 last year, but the supplements have fixed it.
Most doctors just do the TSH regarding your Thyroid, it is best to do these, I have to pay privately myself to do them, but so glad I do as my TSH stayed normal for years!
TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.
An underactive thyroid is capable of all these symptoms:
Sorry for the long post. I learned on the day that I worked for 8 hours that I simply cannot handle an 8 hour day ever. I can sometimes do 5-6 hours every once in a while, but even that is too much for my body to handle, and my pain doctor isn't going to give me more pills to push any harder than I am already pushing myself. So, from this work experiment, I learned that 5 hours is my max for work and standing. I also learned that sitting in a chair without elevating my legs is more painful than standing. Driving is also more painful than standing. I learned that the best job for me would be one where I'm standing in the same spot for four hours and not running around a very large building. Or a sitting job for 8 hours where I elevate my legs on a recliner chair, of which I doubt any employer is going to allow a worker to use a lazy boy with a keyboard on it. I also do not have any higher education which pretty much eliminates most office jobs here in the US.
Once I hit 50 in a few years, I receive the kiss of death in America. Middle aged, white, and uneducated. That's the age criteria where you are considered no longer employable by most companies. Sorry to be so blunt, but that will be it for me without higher education. Not unless I go back to driving at which they will hire anybody with a heartbeat. Sorry for that rant. I just have several friends who can't find work being middle aged and even some are educated. Companies want younger stronger workers. Add in a disability and it is hard to be considered. The company I work for now has an extremely high turnover rate. They probably would drop me as a worker if they could, but they have no choice. I am still slower than my partner who cleans the other half of the building, but I am on time and have not missed one day since I started. I even work when feeling unwell. I just work a little bit slower and go home and right to bed on the bad days.
Man. I’m feeling bad for that leg. I know how my arm can throb and throb and I know how lucky I am that I can elevate it easily. I’m always aware of how lucky I am. Sometimes I clot in soperficial keg veins and it’s a lot tougher but I can get off of them - usually. Pretty quickly.
Kelly, they call it post thrombotic syndrome. I still have non-occlusive DVT and scar tissue in the veins behind my knee. They say non-occlusive, but in actuality, very little blood flow can be seen on Doppler. All of my symptoms and swelling are below the knee. Some people with PTS have their entire leg swell, and also the thigh. I do not since I do not have chronic clots or vein damage higher up in the veins like some do. Mainly my calf and foot are affected by the swelling. Without the compression sock, I would be swollen and limping inside of an hour at work. I didn't need to sock for the first few weeks, but the leg broke down from all of the standing and then the swelling came back. I had been controlling the swelling by elevating my leg for four years straight. But that is like living in a 24/7 prison cell. It's no way to live your life.
That is a good suggestion a security guard. I just hate to chase people and get into physical confrontations. Security officers are like underpaid cops in some areas. All the same risks with no benefits. But there are jobs where you just sit and watch monitors. Those would be ideal. I am looking into that as well. You also work long hours as a security guard. Some jobs are 12 hours a day and you need to do a lot of walking. I'd have to find a part time job. All doable now that I know how badly my body will behave from said amount of work.
Some are just hired to watch monitors and notify others if something is amiss. Then you could be sitting with your feet elevated, good luck it seems you are working very diligently I’m proud of you, good job! Cindy
I am looking into that. I can listen to the radio all night. Go from cleaning the building to patrolling it and watching others clean the facility lol. A step up from being a Janitor. I do have a new found respect for service sector employees now. So overworked, underpaid, and definitely underappreciated.
Wow! I would sit in a corner and cry if I had your problems. If I could send you a magic potion via the internet I would do it right now! Very brave to stick it out and the only thing I could think of (other than what other peeps on here have suggested) is that it could get better with time? If you've been a couch potato there's a lot of your body complaining (with good reason) right now at the drastic change. I wish your boss would appreciate the effort you're putting in and cut you a bit of slack.
Starting about 2010 my primary kept asking me if I could retire because of chronic pain (undx regarding aps at the time). When I would visit him he would say how can I help you today? I would always say bring out the magic wand.
Ozchick, I wish it was that easy. As it is, they only give 2 of us 4 hours a piece to clean an entire 43000 square foot office building. I have had to stay late and work for free to finish some of my work because I am slower than a healthy person. The only appreciation we get is when the customer is happy and does not complain about a missed spot of coffee on the floors, or a missed crumb on the carpets lol. There is no appreciation for cleaners from what I can tell.
I want to print this off, frame it, and hang it in every office I know.
( but every one I know- already carries this in their consciousness! Even when I’m in the hospital, I also give gifts to the cleaners of my room. I see them more often than the doctor!)
I am having a few thought Gina inspired. But your response to her regarding finances/ taxes/ etc may make this a no go.
When I need to find employees in a hurry, which usually does not happen to me in my particular line of work, there are two options.
1. The Texas work force commission. You must have something similar in your state, I don’t know which one you live in. It’s a registration/ the job skills matching program with seeking employer to seeking employee. I do not like this system st all. Usually I find you get “ bottom of the barrel” on both ends - company and employee alike because they have not saught out your corporation or vetted you personally. ( I’ve never used it- I’ve just been made aware of it. )
2. Another interesting organization we all know about is the Salvation Army, but what I recently learned, that I did not know about, is that they have a program for job training in some communities. They will come into a community and discern / ask community leaders where they feel lacking job skills are . Salvation Army will train employees in that community to fill that void in that particular community!
I learned about this at a Rotary luncheon. Such a Salvation Army training center was being opened in our community of Kerrville Texas about two years ago, and the woman launching it was the guest speaker. She was explaining how it worked to our group. I also have not had a need for it yet. Can’t comment personally.
Gosh how awful, luckily I live in the uk must be so hard for you
Just a couple of things you probably have already been asked, how is your Inr doing, ? You have diabetes don't you. Controlled with medication, have you seen a vascular surgeon ? Stent although probably expensive in the USA
I got the diabetes partially under control. I am so tired some nights and weekends that I don't even have the energy to use my Insulin so I just keep my blood sugars high at those times. No vascular surgeon will take my cheap insurance. But surgery won't fix my entire body though.
I have noticed (as to jobs) that you are writing very good with no mistakes at all (and this coming from a Swedish woman) so I wonder about writing and watching a screen or computer and perhaps security job also involved.
You can not go on like you have done as that will ruin your life. But do not give up as there are a lot of things for a man like you. I do admire you!
Thanks for the compliment Lure. I am good with writing and also was in Nursing school for a while. I did quite well. I have been thinking about going back to complete my degree. The academics come easy to me all except maths. I can get a B in math, but it takes every ounce of brain power I have to pull it off. Everything else comes easy to me. I just don't want to get a degree I can't use. Nurses are on their feet 12 hours a day. I can't do that. So, the degree would be useless to me other than having that as an accomplishment.
With me, chronic pain raises my blood pressure. A lot.
Is there a Goodwill program in your vicinity? I know you are not their usual demographic, but that actually may make it easier for them to pair you with a more suitable job. But if you have to retire and if you can make ends meet on disability, you should definitly volunteer somewhere. Soup kitchens, Salvation Army Boys and Girls Clubs. after school tutoring —just because you cant make a paycheck doesnt mean that your time, talents and character- which impressed all of us who read your posts! ,- do not have extreme value in our broken world!
And there are some strange jobs out there. I recently visited the Sea Life Center in Seward Alaska where I saw a huge, but orphaned baby walrus. He was being cuddled and petted by 3 or 4 folks who had the paid positions of “ walrus cuddler.” You see, walruses spend the first 48 Months of tbeir lives in constant physical contact with their moms. Walruses deprived of cuddling grow up despondent and sick. And at same place, my daughters old job was to go into the penguin enclosure and scrub the guano off the rocks.
Can you swim? I had a 5 AM job as a life guard at our local YMCA once. I did pass life guard certification — barely. Their usual guards are teens and tweens who refuse to take the 5-7 AM shifts. ( And I was a good guard as I actually paid attention to the swimners and was not distracted by my organic chemistry homework.)
Im hoping that you can find and connect with some little known but needed job in your area.
Thanks for the complements Gina. I really do need a different job. I just can't see living for another 30 years like this. I would still have pain from even an office job because the sitting hurts. I hurt sitting here on the couch and I also hurt out there when working. So, working is just me hurting in a different geographical location than being on the couch hurting. I also recently stopped Statins because I had a dream where a family member told me that my muscle pain was from them. It has not helped though. I'm going through the process of elimination here. I read that some of us Hughes patients don't get enough blood flow to our muscles which causes pain. Also, on my worst days, my INR tends to be a little bit lower. I have been severely neglecting my labs though only testing every 6 weeks. One INR was 2.5 and another a few weeks ago was 3.1. My Warfarin dose is 10 Mgs a day now to manage my INR and can change quite often to lower and higher. I will be getting another INR test this coming week and see what's happening. Also, one ER doc said that the pain when I am standing walking could cause the spikes in BP. So, maybe it is the pain. When I'm at work most days, it's like I'm running on pure adrenaline. Then once I get home and the adrenaline rush wears off, I am limping and hardly able to walk. But last week was so bad for me that the energy adrenaline wore off half way into my shift on two days and I was too tired to even put a meal into the microwave after work on those days. I had to buy fast food, eat, medicate, then fell asleep for 15 hours right on the couch with my legs elevated. This part time job is burning up all of my spoons but I am so amazed that I have made it to work every day on time for 4 months and have done so even on my worst of days. I can't really miss though because there is no fill in for me or my co-worker. On the days one of us misses, work does not get done, and the customer complains. This also adds to my stress level not wanting to take a day off because it will cause conflict at work. My co-workers have missed 5 days collectively since I have been there and I have had to pick up the slack for them.
Gina, my disability check would be 700 a month if I re-filed. I worked for many years as an independent contractor and used all of my tax deductions to get out of paying taxes. I never put into the SSDI system for like 10 years, so I have a very small benefit. I would really be scraping by on 700 a month. Although, 700 a month is what I make now after taxes for 4 hours of work a day at 10.80 per hour. I'm also in the service workers Union, so they take 20 dollars a month from my check. But I get paid holidays and 7 paid vacation days and some sick days. Most part time employees do not get paid vacation and paid holidays. So the union dues are pretty much given back to me in other ways.
Well said Notfab (even though I think you are fab!) but The wages in the States are pretty miserable hence the need to tip at Restaurants etc. We would only ever tip over here for exceptional service because our adult minimum wage is just over $20/hour. Having said that, however, when my daughter was at uni one of her roomies had a job at a cafe where they paid $10/hour-even on Sundays and was told 'There are plenty of students lining up to take your place if you don't like it' So i can understand Blizzard's position on not wanting to give them any ammo to fire him.
This is all good advice. Actually the smaller cleaning jobs pay more money. Me and my brother used to clean a small dance studio for 600 a month and it only took two hours a day. It was a pretty chill job. I don't want to start a business right now because then you have to work every day. Employees are not reliable and when one quits, or you hire the wrong one, owning a small company can be a big nightmare. Not unless you and a family member are working together and can rely on one another to be dependable. I like just doing my four hours and leaving. It is much easier. I don't worry about the other aspects of the job. I let my manager worry about that stuff. I don't think all people on disability are lazy. Some are scared to death to try working again as I was and still am. They fear they will be discriminated against, abused, and lose their benefits. The most important benefit I receive is my healthcare. They might cut some of it now though because I work. Without healthcare from the government, I would literally spend every cent of my working pay of 700 dollars a month for doctors appointments, medicine, and INR testing. I would be working just to stay medicated. It's quite depressing when you think about it.
I am so lucky to have family to stay with and my mum lets me drive her car at night now. That is the only reason I have this job. I couldn't imagine sitting on four busses to get to and from work in chronic pain. It would be a sheer nightmare. My commute is 15 miles one way and there is a lot of traffic on the way to work. It takes me 30-45 minutes to drive the 15 miles. When I get out of work at midnight, there is no traffic, and it takes me a mere 12-15 minutes to get home. To be completely honest, there are some days where I am most definitely not safe to be driving on the road. I take one pain pill when I wake up in the morning, then I wait 7 hours until I am 5 minutes away from work, then I take a double dose of pain meds to get me through the four hour shift. I then drive home in pain and take my next dose of meds after I am safely at home. At no time am I driving under the influence. But the BP med Clonidine has an intensifying effect on the narcotics and makes me sometimes very sleepy. I am almost able to fall asleep even when I'm standing up and working. It is a very powerful drug. The night I had to take a double dose to control my BP was horrible. I felt like a walking zombie. But I had to work. I will only miss work when I am in the ER. I figure a four hour work day is a God send for me. If I can't force myself to do that I am just a slacker.
I went to the ER a few weeks ago and had my BP issues documented finally. I had a BP of 170/118 standing, and then completely normal for two hours while laying down in an ER bed. Then upon 1 minute of standing, my BP shot up to 150/110 and it was continuing to rise. The doctor was all freaked out but didn't want to treat me because it was low when sitting. Again it was noted that I have left ventricular hypertrophy. But this time it was not nonspecific. I finally meet multiple voltage criteria for the diagnosis. I have been referred to a cardiologist for over a month now but I've been too burnt out from working to schedule an appointment. I will force myself to do so next week. I don't know who to talk to about my muscle soreness as every doctor has dismissed it as just being out of shape. I don't see how the soreness would last this long. Even body builders don't get sore after their muscles are built up. They have to keep on pushing harder to get sore and get more pumped up. I am doing the same tasks day in and day out and not improving. I am sweating like a pig from just changing trash can liners and it is not a physically demanding task like mopping and vacuuming. Any how, thanks for the advice. Sorry for disappearing. I had to sleep most of the day and am still tired. Tomorrow is back to the torture chamber for me. Please send me some energy. I'm going to need it. J
I would try other forms of work, but my mum uses the car for work during the daytime. I had to find a job at night which limits what I can do. I might try fast foods next. I was just so scared to death to even stand up for 4-5 hours a night. I thought I would get more blood clots from being active. I still fear clots on the days when I pull muscles from kneeling down on the floor to replace soap canisters in the automatic dispensers under the bathroom sinks. That is the most challenging work I have to do. But fortunately for me, it is only once a week I have to replace those. Now that I know my rock bottom limitations, I can find suitable work. I was looking into doing pizza delivery, but mums won't allow me to use her car for that. I know pizza delivery will be easier because it will be 3-4 hours a day 3 days a week. But it will be more physically demanding for me to get into and out of the car multiple times a day. It would wear my body out even faster then the cleaning does. I still have to be careful how I enter and exit the car as it is very difficult for me. At the end of my cleaning shift I literally have to pick up my bad leg with my arms and drag it into the car after I sit down butt first. Then I drag and twist my bad leg into the car, followed by my good leg. I have to have the car door all the way open and the seat pushed all the way back to allow enough room for my bad leg to clear the door opening. It is a huge structured process that would be daunting to do multiple times a night. Sometimes when I get home, I just sit in the car for 5-15 minutes building up the strength to force myself to climb out. I just want to sit there and go right to sleep. If the disability people only saw that side of all of this. They will point to my 100 percent on time and attendance rate at work and say there is absolutely nothing wrong with me. They don't see the physical toll it takes on the person to force themselves to perform and put on a brave happy face at work when they are struggling to just make it through a 4 hour shift in one piece.
Have you considered an alternative medicine/ functional medicine consult? Their highly personalized diagnostic criteria and diet/exercise/supplement can not be certified by standard scientific certification because the treatments are so individualized. But with me, a multiple drug allergy APLS patient, Cleveland IDed a food allergy. The blood work indicated a high histamine food, so, they gave me a very restrictive diet list. I eliminated the whole list for some weeks and then, one at a time, reintroduced. And it was cashews! Cashews?! Yes. Apparantly. And since then my health and energy level improved.
And I also have had bizarre nutrition absorption issues -despite being gluten free. For the past few weeks I have been unable to walk more then 3miles before my right shin muscle ( the one on the arthritic knee side) cramps. On a walk with my husband last night my cramping began and he observed, “you know this happens when you dont drink Gatorade.” And yeah! Because it isnt the peak sweating season I havent been keeping up with the magnesium and potassium intake. So Im back to a Gatorade a day and we’ll see.
So I do not presume to compare my minor issues with yours, but given the extensive nature of your muscle soreness, you may have a basic, structural issue of — a nutrition deficiency? —a reaction to something? — a glitch in a hormone interactions( such as thyroid?)—an undiagnosed, sneaky toxic metal load hiding in your tissues?
The other thing is your pain meds. I also have chronic pain and I hated the feeling of being bombed out. I now have a slow release form of Oxycodone called Targin, which I take 12 hourly. Comes in different strengths and initially I took it because of the constipation I was getting with Oxycodone alone. It is a drug combined with low dose Naltrexone (LDN). If i get a very bad day-much rarer now that all my meds have been tailored to my needs-I can have a back up Endone 5mg. For me it was the nearest thing to a magic potion. But-and there's always a but-It does have side effects in some people, just like any drug and I was lucky enough that I didn't get any.
Some on here are already taking LDN for their APS with some benefit. I don't know much about the US health insurance-except that it seems to suck for those who really need help!
I had to renew my 6 month script for Xarelto the other day with my GP and he remarked that he hadn't seen me in a long while. I just told him 'Don't change a thing, it's the best I've felt in years"
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Does anyone know a blood pressure medication that you can take when you have Hughes?
Hello everyone
Question about Hughes Syndrome!
Advice about experts at London Bridge Hospital 
Leg constant cramping 
