Diagnosis

General
21

All my doctors are working together. I am on Cymbalta, I was put on amitriptyline years ago for migraines but became a zombie on them although one of my cats are on it for behavior issues.



tntlamb said:

SSRIs won’t help pain (with the PsA.) SSRIs are highly addictive in the sense that they make you dopamine dependent. A person with a chronic pain problem has problems getting off of them and often develops Dopamine Dependent Depression (DDD) All of this messes with the bodies pain mechanism. You will find numerous threads at the Spondylitis forums and a few here about the difficulty folks have had coming off or switching SSRI’s and the huge pain levels they have had to endure as result of the change. A low dose tricyclic (amitriptyline at 25mg) while not therapeutic for depression is very beneficial for pain.

I’m certainly NOT suggesting a change in meds. BUT you need to make sure all of your prescribers are on the same page and are clearly understanding of your chronic pain issues. If they operate independently of each other. it could be bad.

I don’t know what you are doing in therapy, but aside from any work you are doing with your therapist, some cognitive therapy dealing with the disease has benefited many. This is separate form the family issues you mentioned… Please stay with us we do care ande there is lots of support here.

22

Okay, I've been biting tongue for six hours. I gotta know. Just what kind of cat behavior requires treatment with anti depressants?

23

I adopted this kitten who is now 7 years old, I’m not sure what breed she is but she is a lap cat for sure, if she doesn’t have her meds every other two days she won’t use the litter box, so I brought her to the vet years ago to have her put to sleep because I can’t deal with a cat that pees everywhere and he suggested amtitripline. It has worked great for her and I get to keep her.

24

How cool is that! Treatment that’s effective and cheap! We should all be so lucky! LOL




Hope said:

I adopted this kitten who is now 7 years old, I’m not sure what breed she is but she is a lap cat for sure, if she doesn’t have her meds every other two days she won’t use the litter box, so I brought her to the vet years ago to have her put to sleep because I can’t deal with a cat that pees everywhere and he suggested amtitripline. It has worked great for her and I get to keep her.

25

When the meds are better managed, there are fewer flare ups. Its tough to predict what will happen with each person, so initially, it's a wait and see sort of game. Again, I am physically no better than when I was first diagnosed. The pain is incredible and it's every day. But, it's better managed. I get up at 5 am, take my meds, go back to sleep for an hour and then, I'm ready to go. Of course there are some days that is really hard or the meds don't quite do the trick, but those are fewer than they used to be. And, I am an outlier. Most people have better response to the biologics and DMARDs than I have.In the beginning, I thought I would not be able to work and would have to try for SSI, but things have gradually gotten better. I work 50-60 hours a week. If I had somehow been granted SSI off the bat, it would have been a mistake. That is why it's so hard to get.

There isn't one of us here who would be able to function without medications. That is part of the disease. I take several on a daily basis myself just to get out of bed. What I mean is that it's not atypical for this disease to need meds to function. That is the hope actually - that with meds you WILL be able to function. Some of us will never be who we once were physically, but those changes don't necessarily mean permanent disability that impairs one's ability to perform a job. Also, with medications, the progression is slowed and/ or stopped. There is no reason to believe that, with treatment, any of us will be permanently disabled from this disease anymore.

The part that makes it so difficult with SSI is that, initially, when you feel the worst, there is no financial relief offered. The hope is that with meds, the disease is better controlled and then work is possible. No one will be approved for SSI without proof that they have tried x,y, and z treatments for whatever the predetermined time is. By the time one miht be approved for SSI, they would be feeling better anyway. It would be great if there were short term relief available for initial treatment set up, but that's why I made sure to get short term through work. You might be able to get it during open enrollment through your job. It's pretty cheap. Probably won't be able to get long term without a physical exam which mean you probably won't get it. I would still try though. If you ever change jobs, sign up for both immediately. No physical exam, no medical history required. I carry both now, and hope I won't need either, but it's a nice cushion.

All of us are better off if we CAN continue to work. If it can be managed, one needs to do whatever can be done to keep going in as normal life as they can make for themselves.



Hope said:

So what happens with work when you get flare ups? I read that in July of 2012; they passed Fibromyalgia for SSI. This is ridiculous, so when and it will because this is progressive my joints cripple up, will I qualify then? Also, I may have gotten to this early but mine has progressed to the point I can't be off meds or there is no way I can function.
26

I had an earlier flowery reply with a life history and phisophical bent. I deleted it. It has been a long while since I let it out. I have to or I'll explode. We have some folks with Fibro here that also have PsA lets hope that they never find where you live. The same for any who have become disabled by it. Its a very slippery slope to be comparing diseases.

SSDI is for people who are totally disabled. Its isn't for people who take pills or feel sorry for themsleves - there are lots of those. What-ever the disease may be, unless you are on the north side of 50 (more like 55 - 60) and have done everything imaginable to rehab yourself (including enrollment in a state sponsored vocational rehab program.) hell will freeze over before you get disability. If you go to the social security office in my town to apply, you will be met by a clerk who is quad, has one bag for pee an other for poop hanging from her chair and types in your iformation witrh a soda straw in her teeth. Although as said before if someone is willing to live on 875.00 month pay for their medical insurance and health care and hope for the farm bill to pass so they can get food stamps they almost deserve it. There are those of course who think of it as supplemental income as they really didn't need to work because of spouse etc anyway. But you ought to hear these people when the hit retirement have their medicare subtracted from the 875.00 and don't have their work credits applied to their joint retirement income effectively reducing their retirement income by 50% or more.

So what happens when you have a flare? You take your sick days, when you run out of sick days you take FMLA days. But mostly you learn to work anyway flaring or not. Even if you work half time it pays better than disability.

One other minor point all of us here has had their disease progress to the point where we cant't be off our meds and function. So do you know what we do? We take our meds. Sometimes we take the nasty ones on our days off so we can be in shape to go to work. During our break times at work we move our desk chairs aside or make space to go through the 30 minutes or so a day it takes to stretch out and keep mobile. In the evening instead of drinking wine we make wine. Instead of taking a jog through the woods we do chair yoga. We wear long sleeves the year round to cover up any P break outs. We learn to savor every moment we have with spouses friends and family. We NEVER look backward, we never carry baggage. I spent 16 years to become a top mechanic known by all the other mechanics in the country. I invented ways to fix things that had never been fixed before. Then I couldn't do the work. But I found out I really didn't like being a mechanic. All that experience did was make me a better math teacher. Mechanics need a lot of math so all their new fixes work.

So I am glad you have learned that if you take your meds you can function, that's a good thing. And while you are functioning think of that person with fibromyalgia whose nerve pain in every part of her body is so extreme, that none of her meds work and because of uncontrollable pain is forced to live in poverty on SSDI with minimal medical care,minimal food, and an even more minimal function. A person whose pain is so intense that even a comforting touch sends them through the rough. Imagine not being able to receive a loving touch. I agree as you said its ridiculous that they have to live that way or had to wait so long for help. As the mechanics figure more it out, perhaps they will get meds that will allow them to function too. The good thing is that few FM sufferers gets to to that point of disability just as few PsA sufferers get to that point.

I'll apologize NOW to any I have offended. Not for offending you but for failing to communicate that there is more hope for this disease than not and that we can fight it. Anyone who thinks I don't know what its like doesn't know where I have been or where the disease has had me.

Hope said:

So what happens with work when you get flare ups? I read that in July of 2012; they passed Fibromyalgia for SSI. This is ridiculous, so when and it will because this is progressive my joints cripple up, will I qualify then? Also, I may have gotten to this early but mine has progressed to the point I can't be off meds or there is no way I can function.
27

I will only say this, if any medicines I try do not help me, I will go on SSI, even if it’s because of mental issues.



tntlamb said:

I had an earlier flowery reply with a life history and phisophical bent. I deleted it. It has been a long while since I let it out. I have to or I’ll explode. We have some folks with Fibro here that also have PsA lets hope that they never find where you live. The same for any who have become disabled by it. Its a very slippery slope to be comparing diseases.

SSDI is for people who are totally disabled. Its isn’t for people who take pills or feel sorry for themsleves - there are lots of those. What-ever the disease may be, unless you are on the north side of 50 (more like 55 - 60) and have done everything imaginable to rehab yourself (including enrollment in a state sponsored vocational rehab program.) hell will freeze over before you get disability. If you go to the social security office in my town to apply, you will be met by a clerk who is quad, has one bag for pee an other for poop hanging from her chair and types in your iformation witrh a soda straw in her teeth. Although as said before if someone is willing to live on 875.00 month pay for their medical insurance and health care and hope for the farm bill to pass so they can get food stamps they almost deserve it. There are those of course who think of it as supplemental income as they really didn’t need to work because of spouse etc anyway. But you ought to hear these people when the hit retirement have their medicare subtracted from the 875.00 and don’t have their work credits applied to their joint retirement income effectively reducing their retirement income by 50% or more.

So what happens when you have a flare? You take your sick days, when you run out of sick days you take FMLA days. But mostly you learn to work anyway flaring or not. Even if you work half time it pays better than disability.

One other minor point all of us here has had their disease progress to the point where we cant’t be off our meds and function. So do you know what we do? We take our meds. Sometimes we take the nasty ones on our days off so we can be in shape to go to work. During our break times at work we move our desk chairs aside or make space to go through the 30 minutes or so a day it takes to stretch out and keep mobile. In the evening instead of drinking wine we make wine. Instead of taking a jog through the woods we do chair yoga. We wear long sleeves the year round to cover up any P break outs. We learn to savor every moment we have with spouses friends and family. We NEVER look backward, we never carry baggage. I spent 16 years to become a top mechanic known by all the other mechanics in the country. I invented ways to fix things that had never been fixed before. Then I couldn’t do the work. But I found out I really didn’t like being a mechanic. All that experience did was make me a better math teacher. Mechanics need a lot of math so all their new fixes work.

So I am glad you have learned that if you take your meds you can function, that’s a good thing. And while you are functioning think of that person with fibromyalgia whose nerve pain in every part of her body is so extreme, that none of her meds work and because of uncontrollable pain is forced to live in poverty on SSDI with minimal medical care,minimal food, and an even more minimal function. A person whose pain is so intense that even a comforting touch sends them through the rough. Imagine not being able to receive a loving touch. I agree as you said its ridiculous that they have to live that way or had to wait so long for help. As the mechanics figure more it out, perhaps they will get meds that will allow them to function too. The good thing is that few FM sufferers gets to to that point of disability just as few PsA sufferers get to that point.

I’ll apologize NOW to any I have offended. Not for offending you but for failing to communicate that there is more hope for this disease than not and that we can fight it. Anyone who thinks I don’t know what its like doesn’t know where I have been or where the disease has had me.

Hope said:

So what happens with work when you get flare ups? I read that in July of 2012; they passed Fibromyalgia for SSI. This is ridiculous, so when and it will because this is progressive my joints cripple up, will I qualify then? Also, I may have gotten to this early but mine has progressed to the point I can’t be off meds or there is no way I can function.

28

Well if you can't get enough improvement from treatment to work, that's what SSDI is for.....

29

True, that’s what I’m afraid of.

30

What does FMLA mean? only seen that here on this site

31

Family and medical leave act. US law that protects workers who take off for up to 12 weeks a year for personal or family illness, birth of a child, adoption of a child.

32

From the website:

The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Eligible employees are entitled to:

  • Twelve workweeks of leave in a 12-month period for:
    • the birth of a child and to care for the newborn child within one year of birth;
    • the placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement;
    • to care for the employee’s spouse, child, or parent who has a serious health condition;
    • a serious health condition that makes the employee unable to perform the essential functions of his or her job;
    • any qualifying exigency arising out of the fact that the employee’s spouse, son, daughter, or parent is a covered military member on “covered active duty;” or
  • Twenty-six workweeks of leave during a single 12-month period to care for a covered servicemember with a serious injury or illness if the eligible employee is the servicemember’s spouse, son, daughter, parent, or next of kin (military caregiver leave).

http://www.dol.gov/whd/fmla/

All that being said If you require the time off work through your companies HR department not your immediate supervisor.

33

Thank you for your replies, very interesting. In Canada we have something similar with different headings. I just recently came off 15 weeks of paid sick benefits paid from Service Canada, similar to Unemployment Insurance but not quite as my job was protected

34

Hope is my given birth name. Well, today with 10 mg of prednisone did nothing for me as it usually has. I’m waiting for my chest X-rays to come back so I can get on methotrexate. I am having major anxiety because of this pain.



sybil said:

Hope, you’ve got (or have chosen) the right name! Don’t be afraid - I know that’s easier said than done but you will very likely get so much better than you are just now … that is honestly how it goes for most people as far as I know. So often (almost always?) the symptoms improve with the right meds. I did not believe that at first either.
Hope said:

True, that’s what I’m afraid of.

35

Family leave act.



Easternlady said:

What does FMLA mean? only seen that here on this site