I am new to sporiatic athritis, and am in lots of pain lots. I have it in my ribs, breast bone, neck spine, hips, knees, ankles, toes, shoulders and hands. I am to start humira soon but not soon enough everything the doctors are giving me does not help. I am still working but think i am not going to be able to much longer. I call in sick a lot because in the mornings i can't move. I am very confused to what i should do. if i should work through the pain or tell my doctor's i can't do it any more. I have two young kids 6 and 2 and i am a single mother. After work i don't have much left for them. I think I am waiting for some one to tell me thats its ok for me to say i am in to much pain. Looking for help please
Sounds awful. I tried to ignore the fact that I was in a lot of pain and exhausted for over a year. Just give into it and allow yourself to be ill, saves a lot of angst!
Wow...I share your pain! I don't know how you could work with this horrible disease and then take care of 2 young children yourself. I would strongly suggest that if you have any type of short term disability insurance, or long term disability insurance, that you take advantage of it, and get off work as soon as you can. This disease will not get better by pushing yourself into tremendous amounts of pain every day. You have a responsibility to take care of yourself number one, and your kids number two....you, your children and your health have to be the priorities, not the job....
Good luck to you, glad you found us here.
I know how you feel and unfortuneately have no words of advise. I’ve been told that with this condition you just have to try the diffirent meds and see what works for you. I have the most pain in my lower back made worse by sitting and I have an admin job. I just try take each day as it comes. Just hang in there
The best thing to do always is to be honest with your doctors about your pain levels and how difficult life is for you. Some people find that they need time away from work to get their health in order - to balance meds, healthy eating, balancing movement and rest, and taking care of children and household before trying to throw work into the mix. Some people with PsA are unable to work. Hugs to you. I hope you find relief soon!!!
Hello Priestesspink, I know exactly what you are going through. If you read mypage you'll see how much alike we are. I'm married but when it comes to working, parenting and responsiblities I always feel like i'm alone. After 8.75 hours of working and 2 hours of commuting I come home to watch my kids while my wife goes into the bedroom to relax. Sometimes I have to make dinner and I do all the grocery shopping, driving and a number of other responsibilties.
It is very hard to work under this condition, I sit most of the day but couldn't take it any longer. Fortunately for me my meds seem to be starting to work. I was so much wanting to just stop working but for my kids sake I stuck to it. I don't have any type of insurance so short term or long term disability was completely out of the question for me. If I had it I would have been off in a heart beat.
I don't know what you do to help you get around but I started using a cane, pain killers, hot baths and other relaxing techniques to help me through it. Also, if you can try talking to your 6 year old. See if they can help by getting things for you so you don't have to get up so much. Even my 2 year old likes to get me things when I ask for them. He's learned what a cane is and my usual places to put it. With my situation, I talked to my 8 year old and my 7 year old and let them know that I was in pain and that it was hard on me to do things. They seemed to understand and not always but most of the time helped me.
Thank you all for the post's. I do have long term disability but not short term disability that is the problem. I have to be off work for 119 days be for i can claim it. I could go on ei but would not make enough money to live off until i got my disability. So my questiong to myself do i fall behide on everything and look after myself or do I work through it as much as i can so i don't fall behide.
I don't mean to sound trite or uncaring. I understand the "pain" and I kow HOW it effects each of us differently. I don't know what treatment you are taking (if any) or you are if its had time to really have an effect. Here's the thing PsA is an autoimmune disease meaning the pain isn't caused by environmental things like "work" Its caused by inflammation. That's not to say things we do at work can't aggravate it, and certainly we know STRESS causes some flairs. But theb "pain eventually "comes and Goes"
BUT all that being said even if you were at home sitting in a recliner eating bonbons (that was meant to be funny) if your treatment isn't controlling the inflammation or you are in the midst of a flair the pain will still be there no matter where you are. You need to consider the effect of being home with a two and six year old all day while falling further and further behind will have. Stress goes up, inflammation (along with pain) goes up. Young folks who aren't/can't "work" are known to have significantly higher levels of depression along with a lot of other problems And certainly you already have a plate full. You need to be absolutely SURE such a move wouldn't add to your plate. MOST folks never return to work, its not always just the "disease" but a combination of life's events.
Have a frank discussion with your Doc or Voc rehab folks (or both) there are often accommodations that can be made at work (heck even a disabled parking permit helps) You doc has a lot larger arsenal than you might thin from in injections to pain management specialists. I'm close friends with my doc (we are neighbors) but she tells me her biggest frustration is lack of specifics from her patients and seeking solutions for those specifics. Way too many are given in to "pain" instead of "I can't go up the steps because I get cramps in my toes" She can (and did) do something about that
I've suffered with this thing for a long time. I have been in a wheel chair from flairs and have back packed across a national park months later. We can fight it but we can only fight a piece of it at a time. Jackson shows a lot of wisdom. I can't help but wonder IF he hadn't no choice but to fight this thing tooth and nail, a skirmish at a time where he would be at now?
Sometimes understanding where each of us is at because we have been there is not enough.... Sometimes (not all the time) We also need to tell each other to cowboy up.
I'm not direct this to you Priestess but sometimes an online support group can become a group of people sitting on the their pittypots typing out the "worst" Its great to be able to do that and be understood, but its equally important to know we have to move on........
Not sure what pittypot is but I think I agree with what is being said!
Having PsA can't help but make you feel down though. It is a chronically painful condition and that will impact your whole life. Make sure your doctor/rheumatologist is understanding and there are treatments available. I should know, I am working my way through most of them.
tntlamb said:
I don't mean to sound trite or uncaring. I understand the "pain" and I kow HOW it effects each of us differently. I don't know what treatment you are taking (if any) or you are if its had time to really have an effect. Here's the thing PsA is an autoimmune disease meaning the pain isn't caused by environmental things like "work" Its caused by inflammation. That's not to say things we do at work can't aggravate it, and certainly we know STRESS causes some flairs. But theb "pain eventually "comes and Goes"
BUT all that being said even if you were at home sitting in a recliner eating bonbons (that was meant to be funny) if your treatment isn't controlling the inflammation or you are in the midst of a flair the pain will still be there no matter where you are. You need to consider the effect of being home with a two and six year old all day while falling further and further behind will have. Stress goes up, inflammation (along with pain) goes up. Young folks who aren't/can't "work" are known to have significantly higher levels of depression along with a lot of other problems And certainly you already have a plate full. You need to be absolutely SURE such a move wouldn't add to your plate. MOST folks never return to work, its not always just the "disease" but a combination of life's events.
Have a frank discussion with your Doc or Voc rehab folks (or both) there are often accommodations that can be made at work (heck even a disabled parking permit helps) You doc has a lot larger arsenal than you might thin from in injections to pain management specialists. I'm close friends with my doc (we are neighbors) but she tells me her biggest frustration is lack of specifics from her patients and seeking solutions for those specifics. Way too many are given in to "pain" instead of "I can't go up the steps because I get cramps in my toes" She can (and did) do something about that
I've suffered with this thing for a long time. I have been in a wheel chair from flairs and have back packed across a national park months later. We can fight it but we can only fight a piece of it at a time. Jackson shows a lot of wisdom. I can't help but wonder IF he hadn't no choice but to fight this thing tooth and nail, a skirmish at a time where he would be at now?
Sometimes understanding where each of us is at because we have been there is not enough.... Sometimes (not all the time) We also need to tell each other to cowboy up.
I'm not direct this to you Priestess but sometimes an online support group can become a group of people sitting on the their pittypots typing out the "worst" Its great to be able to do that and be understood, but its equally important to know we have to move on........
Preistesspink,
Each person deals with illness, chronic or acute, in a different manner and I really wouldn't let people that decide that they want to be negative and unsupportive get you down. While PsA is most certainly an autoimmune disease as the person above indicates, many things that we do (like working and stress) certainly CAN make the pain worse and aggravate specific joints, especially spinal pain when sitting for long periods of time, which is why is why I had to give up a very lucrative career at a young age (the PsA in addition to my spinal surgeries).
Preistess, you have two young children that rely on you for their survival and development. If you are in so much pain when you come home every day that you are unable to function, you are not only not helping yourself, but you are not helping your children the the extent that you would want to be able to if you were not in pain. I know as I have been in the same situation. Yes, TNT, workplaces can make some accomodations for you, and if that is a possibility for you Priestess, you should certainly take a look at it, however it may not be enough....I know it wasn't for me, however each circumstance is different. If it works for you, and you can continue working, then that is great, but if it does not help, then you really need to see if there is some way that you can get some rest, either through accumulated vacation days and sick days used towards the short term disability requirement, or perhaps relying on family for support through that time.
I personally find it offensive that ANYONE on a site designed for support of people chronically ill would tell people to get off "their pittypots typing out the worst" and being told to "cowboy up"........Understanding, and sometimes just venting about our frustrations is perhaps all we have left with this horrible disease.
TNT, I don't know anything about your personal situation, however I found your comments towards Priestesspink to be crude and offensive.....unless of course you are just trolling to illicit a response, in which case, you have been successful.
Priestess, keep your chin up!!! Most of us are with you.
You are right, you don't know anything about my situation, and sometime Dani we read too fast and don't read everything........ Even the OP has some doubts about quitting work. Going months without income waiting for disability to kick in as a single mother would be pretty terrible I would think. Worrying about yourself is bad worrying about feeding your children would be horrible, and how to opick up the debt on disability just as horrible. Strees is one of the biggest contributors to this thing.There are a lot of things to do before making huge and life changing decisions that can have devestating effects on ones life. Until they are exhausted those decisions should be delayed. There are thousands of us with this terrible disease who have been at the lowest, but have also eventually responded to treatment (80% of us do BTW) who we gave in at the low would never be at the high again. we paid hell to keep hold of our lives but had them when the flairs passed. They do eventually. Read carefully please: "... sometimes an online support group can become a group of people sitting on the their pittypots typing out the "worst" Its great to be able to do that and be understood, but its equally important to know we have to move on........"
Hard as at may be to believe there are a number of of us 60 somethings who have fought this thing for 40 years or more starting when the treatment was - no treatment, few NSAIDS, no MTX no biologics, no PT, and little else. We kept our lives when we were as low as any here and few options to do anything different. The fact is we learned NOT to be defined by our disease. That's not to say we didn't lose a few skirmishes along the way. I certainly have.
You can be offended when someone who knows nothing about this disease tells you to cowboy up, But I wouldn't be so quick with someone who has it................... I didn't tell Priestesspink that though, did I. (thats where that reading everything comes in) She hasn't started a lot of treatment yet or her first Biologic. There is a lot of hope she can improve a lot an quickly. She apparently not had any sight injections either. As I said she and her Doc need to work together for some solutions before making BIG decisions on her own. There is an other side to every decision. Not all of us want "pity" from someone who "understands" some of us want support to fight "it" from someone who understands.
gwenneth -Pitypot is an old AA term that sort of means feeling sorry for yourself. The "pot" is what you might think it is Its a tad bit crass in that it means its okay to get it out and move on, but sometimes you stay too long, fill it up (with what you might think I'm talking about,) and have it overtake you. Members of that group understand the need to get it out, have others understand, but are loathe to let "it" overtake anyone. Its important with chronic disease too. We need to remember that we die WITH PsA not FROM PsA and that most of us will have pretty normal lifespan. My mom had it the worst of the four of us. Died at 92 pretty much in a knot in a wheel chair but still walking when she could. My oldest Sis gave up climbed on the Pity and died at 68 living 30 years (mostly miserable) in he recliner. My other sis and I have been fighting it hard as did my mother. Mostly we have a great life (but there are those flairs) There are worse diseases. BTW we both have the spondylitis type and are fusing She got it in her eyes and just had a cornea transplant.
This thread seems to be getting a bit contentious and I’m not sure why. If it’s ok I’d like to take the focus back to priestess pink. Yes, it’s ok for you to say you’re in too much pain. It’s also ok for you to vent, complain, scream, cry and shout. We’ve all been there and we all understand. It’s also ok for you to ask for help and say you can’t do everything and that you have limitations. I was diagnosed 5 months ago and I can honestly say it gets better. The wait until you find the right meds can be frustrating, but it does get better. This site and the national psoriasis foundation websites have been huge in my acceptance of the whole situation, which can go a long way. Some advice (if it will help):
- Limit your stress as much as possible. Every little bit you can do will go a long way. See if there are changes you can make at work, even if just temporary, while you get this under control. Meditate, baths, calming teas, breathing exercises, yoga, whatever you can do. Give yourself permission to not do everything or be superwoman.
- See if there are other meds the doc will let you try during your wait to start biologics. Mine gave me Celebrex, which kind of took the edge off the pain a little for a bit.
- See if there are local groups in your area that can provide assistance, like your local churches. It’s ok to ask for help.
4.if there are tests you will need to have done before you start your humira, have the doctor do them now to save time later. You don’t want to get approval then wait an extra couple of weeks for test results. - Ask the doc if you can do physical therapy. As painful as you might think it might be, movement can help decrease stiffness and pain.
- Try to stay positive. One thing I’ve tried really hard to keep in mind is how lucky I am to finally have a diagnosis so it can maybe finally get fixed (or at least addressed). When others around me get negative or stressful, I walk away, tune them out and try to keep myself calm.
Good luck and I hope it gets better quikly for you.
Thank you to all for the advise. I was sad to see that my post cause some negative energy but i do understand everyone's advise and had no hard feelings about any of it. I think I need to explain my siuatioin a little more. I was diagnosed with PsA a week and a half ago. I have been in pain for a least 10 years without any one really knowing what was wrong. In the last 8 months my hands and feet started to hurt. I would wake up in the morning and my fingers would be so stiff that i had to pull them open, i would also go down the stairs on my bum because i couldn't go down the stairs. Then I started getting headache's and couldn't move my neck for days in all of this time i was going to the doctors and he would give me naproxen for a week and it would kinda help, well i wanted it to help. for awhile i thought the pain was all in my head because my x-rays were fine all the time.
A co-worker came to me and told me about PsA because her brother had PsA and my sysptoms matched what her brother went through. She told me to go to my doctor and tell him i needed to see someone about this. I went to my family doctor and he wouldn't refer me to him just yet. My family doctor then gave me some more naproxen and told me to come back in a week. I went back to him in a week in soo much pain that i could barly walk then he did blood tests and my crp was 41 which is high, i work in a medical lab so i know what the ranges are. at that point he gave me an injection and told me that i should feel better by tomorrow. while a week went by and i still was in lots of pain and missing a lot of work because of it. After a week i went back to my family doctor because my hands were so swollen that i couldn't bend my fingers and where so purple that it looked like i hit some one. At that point is when he finally refered me to an internal med doctor. I waited 2 weeks in so much pain i went back to see my family doctor. He told me there was nothing he could do until i saw the other doctor and sent me home with more naproxen. It was 3 weeks later i got into see the specialist. He ordered a bunch of test and told me about methotexate and gave me arthrotec, only one a day.
once i got all the test back a week and half ago, my doctor walk in sat down and handed me a bunch of stuff on humira then told me that i had PsA in every joint in my body except for my elbows. this was the result of the bone scan. He then told me that it was in my best interest to get a tuble ligation before i start taking all these drugs. he also said that he was waiting for my CT results and the results from the HLA b27 to confirm ankylosing spondylitis along with sacroiliitis. I think that i am very over whelmed that it is so bad and wasn't expecting that i was now going to have to go on so many drugs at once. What i am also mad about is that my doctor won't give me anything but arthrotec until my tubes are tied. when i asked him about work and how i should now take care of my life he told me to go see my family doctor who whould refer me to a rehab therapist to see if i can still do my job or if maybe only work part-time and so on. but what do i do in the mean time. i feel just because i know why i hurt doesn't mean i still don't really hurt and it seems to be getting worse on a daily basis. In the last day I have desided that some time off work would be good for me, i feel that i don't have much to give right now and my kids come first. it will be a little hard at first with money and all but i have been down before and gotten back up, besides bills will always be there i will still wake up in the morning life will go on, being behide on some bills isn't the worst thing in the world. My rent will always be paid and there will always be food on my table. clothes may be second hand but they are still clothes and they are young they don't know the difference. I have no intention of being off work long just long enough to learn about my disease
Wow...so sorry to hear about all of this. I can't believe that your doctor won't give you anything until you have a Tubal Ligation. That seems a bit extreme to me...I am aware of the risks of pregnancy with the drugs, however that seems a bit extreme, and delaying your treatment for no reason. Hope you get some relief soon!
Take care of you...and your children need you to!
I can't comment about sterilization vs simply not getting pregnant either. that doesn't make sense on the outside.... A number of women with treatment, havegone on to have successful pregnancies later on.
You do have a plateful. So seeing as you didn't take offense at my rather cynical/blunt manner let me help you sort out a bit of whats happening. Aside from the Tubal ligation thing it appears you have a pretty good team. They may not communicate well AT THIS POINT (and that may well have a good reason) With in a VERY short period of time you have had a work up that most of us took months/years with many repeats along the way. They clearly knew/know from the outset what your dx was.
I didn't know where you are at, whether you are stateside with private insurance system or in a Government directed health care system. But either way you have to check of so many points on a check list to satisfy either that you really have what the docs say you do. But having a dx isn't enough for either insurance companies or health care systems. Before you can get the "good stuff" (The biologics and so forth) and managed pain control you have to have failed several other "therapies" (Stuff I call cheap, prolly doesn't work but the guy writing the checks hopes it will anyway) By the time you go to your next appontment your punch list will be punched your therapies "failed" and you will be able to start some good treatment. (it really looks like they are going through the motions with some of them, but of course they CAN'T say that)
Ok, you are in a bad way right now. We have all been there, and we have all survived somehow. Its what is called a flair. Its part of the disease. Some get it more often than others, there are those who had lots close together, started getting treatment and have gone years until they had another one (we don't meet don't meet those folks on these kind of boards often, but there are LOTS of them out there, and hopefully you will be one of them)
Earlier I said stress was the one absolutely known aggravater of this disease (believe it or not there is virtually no empirical evidence that there are mechanical stressors) I can't imagine with all going on in your life PLUS a very sacry new diagnoses that you wouldn't be flaring right now. But if you read most of the members profiles that is question most answer - What do you do? The most common answer is "deal with it" there is no other choice. Its not an imaginary thing either. Your immune system is chemically altered during stress. While for most forks the infusion of these naturally produced "stress relieving" chemicals help, for us they produce tnfs which cause pain and inflammation. In time you will learn of an upcoming "flair" be it weather, just a funny feeling, or whatever. There are others who have learned it can be a gut problem (there are a lot of gut diseases related) and some food types aggravate it it. For each of us its different, but the more of those things we learn the more we define our disease rather than letting it define us.
It may be that sometime off work to learn what you have and to deal with it may be the right approach for you. But as you do that please please rember that THIS is not how it always is. It does get better, and at some point you will reach a new point of normal. There as a few who never learn that, they suffer needlesly. The fact is the VAST majority of PsA folk do get "better" (Note I didn't say "well")
That sterilization thing concerns me. A second opinion might be in order. There other options to avoid an accidental pregnancy if he isn't confident in traditional Birth Control. But keep in mind they come with risks too. Depo for example aggravtes osteo. if you have the spondylitis form of PsA that could be totally devasting. Certainly more discussion with your doc AND a gyno is in order...