New... worried and so confused.
 

I've been having trouble for a few years. Mostly with pain and fatigue but it took awhile (and a lot of doctors) to finally figure out that I have Thoracic Outlet Syndrome, Fibromyalgia, Ehlers-Danlos Syndrome as well as a few other more minor diagnoses- scoliosis, depression, anxiety, TMJD, and IBS.
So I've been hopping from one specialist to the next, rounds of PT, surgery... and over the past few months it's gotten so bad that I can't return to work. I can't even stay awake all day or take care of my daughter without assistance throughout the day.
I was finally kicked in the pants and told that I need to just apply and stop waiting to get all the information and just start the process. So I did. And now I'm second guessing myself. There's no way I'm going to be granted SSDI without doctors backing me up (they change the subject when I bring it up), without a history of being with one doctor to treat my issues for awhile, and taking my age into consideration.
Of course, my life situation hasn't helped either. I was struggling to work full-time at the end of 2011 when my daughter was born prematurely and I had to move in with family. By the time I was ready to go back to work I could only work per diem (about 12 hours a week) then I had surgery for the Thoracic Outlet Syndrome and now that I'm past the post-op period I'm not finding that I have the ability to go back to work at all. Things have just really progressed.
I'm not on medication. I'm breastfeeding and have a doctor who says that "I have everything I need inside of me to heal myself."
I'm just so frustrated. The doctor I had who would have helped me the most moved to another practice that my insurance doesn't cover. So now I don't even have a PCP. None of my specialists have seen me more than a handful of times and don't know me well enough to judge whether I'm lazy or truly need help.
Now I'm anxious because I'm wondering if I've screwed myself by applying and not waiting until I got to know my doctors better and had a team on board to support the process.
Any advice?

Having been through the process my opinion is it's faster to wait and submit a thorough application.

You need to apply for other benefits like Medicaid and food stamps if you qualify, because it's likely you'll be denied. Starting a new application later on, might be faster than dealing with appeals, but you should be getting documentation now, regardless. Check out Voc Rehab. They'll test you and send you to their docs. If you're still healing, permanent disability might not be appropriate or necessary.

Those advising you likely make assumptions about the SSDI process.

I already have Medicaid and food stamps. Can you tell me more about Voc Rehab? Is that unrelated to SSDI and something I should get a referral from my doctor for?
I've been unable to work since before surgery. My main problem is the fatigue and lack of stamina. I take multiple naps during the day and can't concentrate for crap. The pain is secondary though intense. Fatigue is unrelated to the TOS and has been increasing over the past few years. It had been over a year of not working/working less than 12 hours a week per diem before having surgery which my surgeon has stated I've healed from.

It is likely that those advising me about the SSDI process are unknowledgeable. I'm mostly being told that I need to do this sooner rather than later rather than continue to wait. I'm hoping that this doesn't mess with anything in the long term. I filled out the application to the best of my ability at this time. I think the functioning report will make thing much more clear.

Hi LLT,

A "problem" that I see Social Security having with your case/application is that you are not on any meds. If your biggest complaint is fatigue and then pain, it would be odd for your medical team to find those issues severe enough to cause permanent disability and yet not be severe enough to warrant treatment with medications that could help those symptoms.

That could be consistent with your thoughts about waiting until you were sure about what your doctors were thinking before starting this process. Perhaps they will have more to offer to you for those symptoms when you are done nursing your child. With all of the stressors going on within your body, the added stresses of nursing and caring for a young child may be causing a worsening of symptoms that could show some improvement as your child grows and isn't as physically demanding of you. It may be too soon to tell how you will be able to function in the future, especially after recent TOS surgery.

Those who pushed for you to apply for benefits sooner rather than later may have been concerned for you that the more time that passes since you were able to work FT, the less your eventual benefits would be.

Have you been checking out the TOS and fibro forums here too ? I'm a "lucky" member of both of those "clubs" too, but just don't have the time/energy to keep up with all the forums here that "fit"

Voc Rehab is a program that helps those that are disabled train or adapt so that they can work. That might mean completing a 4 year degree, or finding you a job where you can work from home taking incoming calls. They'll send you to their docs for testing and an evaluation.

This is not a SS program, but documentation gathered during VR, can be submitted to SS. It is a federally funded program, but is state run.


http://www.ct.gov/dss/cwp/view.asp?a=2353&q=305224 CT link!

Best of luck.

There are pros and cons to filing as soon as possible and delaying filing.

Filing as soon as possible gets the process started, gets your case seen by a DDS analyst to evaluate, a consultative exam may be performed and a decision should be made in less than six months. However, lack of substantial medical evidence almost always leads to a denial. Having substantial evidence is helpful, but the evidence also has to show that the medical condition is severe.

For SSI, the application date determines entitlement date which determines first payment date. For SSDI, the entitlement date and payment date can be 12 months before application. So for an SSI claim, delaying is possible money lost.

Filing as soon as possible also puts you in the queue to see an ALJ a year or two later, especially if your prognosis is uncertain or your current evidence is weak. Time will pass and you will either get better or worse. You may also learn more about the process so you can get the medical evaluation to either prove or disprove your allegations about severity.

Waiting to file while preparing could mean that your case could be approved right away, but all the prep in the world doesn't lead to an approval if you are not disabled enough under SSA rules.

Delay submitting
 

Hello,
I agree with those that have said wait until you have a thorough application. Having multiple conditions and illnesses is to your benefit. Combined they equate to a qualifying condition. There are a number of things you need to do before applying:
1) Get copies of all medical records: office visit notes, imaging and surgery reports; including any psychological or physical therapy specialists
2) research your illnesses on line so you have a through understanding of symptoms that contribute to your inability to function at a job. Even IBS has symptoms that can prohibit working. Kept in mind that means even sedentary jobs.
3) Include all illness that you have no matter how insignificant you think they may be (asthma and allergies are examples).
4)The 2010 application only allows you to list them, not describe how they effect your ability to perform work duties. Example: cognitive impairment for you is a big one. ( It includes loss of higher reasoning, forgetfulness, learning disabilities, concentration difficulties, decreased intelligence, and other reductions in mental functions.) AS a result of the symptoms your ability to handle stress is decreased. So, you need to add an attachment that describes the symptoms of each condition and specify how the symptom effects your ability to work. Use adjectives and measurements. Example: Due to the excruciating pain in my legs I can only walk a block or climb 10 stair steps.
5) Do not allow your doctors to dismiss your limitations that disable you. Doctors don't determine disability only SSA does. Ask them to document in their notes your limitations. Then, ask them if they would support your claim for disability. If they don't find a new doctor.
6) With cooperative doctors ask them if they would write a letter to SSA listing your symptoms and limitations.
It takes time to prepare a through application, but it is better than waiting year to get your benefits.
Also considering completing an adult function report http://ssdi-help.com/ssaforms/ssa-forms.htm
If you have any more questions, email me here.
Best of luck
Trudi

Thank you guys. Though I can't say that I love the idea of waiting, I do think you're right and that's why I'm feeling uncertain about all this.
So now a really important question- what the heck do I do now? Since I already sent in the application, can I contact them to stop the process then restart it in a few months when things are better documented and more clear? Do I just let them deny me for the first time and not worry about it while using the next few months to figure things out then appeal the decision and have more info this time around? Can you reapply later after applying once?

I think you were smart to get the process going in my opinion. Let them deny you as you can appeal and get to the ALJ level which takes years. During this time use it to build your case and get evidence. You can always reapply with a new application. That is what I have done. I was denied twice and then got a lawyer and went to the ALJ level and was denied again. All that has taken 4 years. I have just started a new claim and have more evidence and diagnosis and more documentation by specialists. I would not withdraw your application. You have some pretty severe problems. Let it ride and work on getting more documentation. You have to show proof. Go to the hospital when having bad attacks and get the reports etc. good luck to you. I hope that you are able to recover enough to return to work but you can get disability for just a year if that is all that is needed.
Brain

By the way depression and anxiety are not minor symptoms. People are approved for these conditions alone. Sometimes mental conditions are far more disabling than physical ones because they keep you from being able to perform any job. If a person is missing a leg but still thinking clearly with no emotional problems they are able to work far more easily than someone who has depression and anxiety disorders. Those are major conditions when applying for disability benefits. You need to start seeing a psychiatrist right away to document these disabling conditions. They don't just take your word for it.
Brain

I absolutely apologize for the way that sounded. When I wrote it, I meant to say that, for me, they are more minor (less disabling) conditions. My depression is not at a suicidal ideation level nor it is an independent reason for my disability. While it certainly doesn't help matters, my depression would not have made SSDI cross my mind for a second but I do recognize that it is much worse for many other people other there. I used to work in the mental health field- so I'm sorry if I offended anyone!
I'm running into a lot of weird situations. Let me explain briefly...
I lived in Maine working full time until November 2011. In October 2011 I gave birth to my little girl 2 months prematurely. At that point in time, I was struggling with pain and seeing specialists trying to figure out what the heck was wrong with me but during my pregnancy I took a break from that as I didn't want to expose my baby to any medications/tests. Things got worse over those 7 months and afterwards.
Because my little one was born early, she was not allowed to be in daycare and we could not live on a one income household. We moved in with my family in Connecticut which ended up being a blessing in disguise because I continued to deteriorate. I did not work from December 2011 until July 2012 to be with my baby. I was not feeling well at all at this point and was seeing CT specialists. I was only able to work per diem and some days were incredibly difficult to bring myself to go. The 8 hour shifts were near impossible. I worked 1-2 shifts a week each shift being 3-8 hours apiece.
Anyway, it took until December 2012 to get a diagnosis of thoracic outlet syndrome. I had surgery January 2013. When much of the pain stayed exactly the same before, during the post op, and after I was deemed "healed" by my surgeon I knew there was something wrong. Shortly before surgery my concentration plummeted and became a daily plague and it's just worsened. So I saw a rheumatologist with the thought in my head that I should be looked at for my joint hypermobility that causes all sorts of issues and was diagnosed with Ehlers-Danlos, fibromyalgia, and he "bets me a donut" I have scoliosis as well.
Anyway, now I have three new diagnoses that need to be worked up. What sucks is that most of these issues have completely overlapping symptoms so I worry that it'll be argued that the TOS was fixed and so my symptoms are gone when, in reality, there is very little the surgery rectified.
I haven't been taking medications. Mostly because I've been pregnant/breastfeeding. I plan on breastfeeding for another 6-12 months and would like to have another baby if I am capable of it after that time frame (finances and physical condition permitting). There are medications that I would be safe to take that can treat everything but finding a doctor who is willing to work with a breastfeeding mom is near impossible. I'm also on Medicaid and have found that due to my age, insurance, and unmarried status (though my significant other and I planned our baby and live together as a married couple) that I am commonly pegged as a drug seeker though I've never taken narcotic medications aside from being post-op or when I had a broken rib. My current rheumatologist thinks that everyone with fibromyalgia has "everything inside of them they need to get well." Some medications that are indicated for fibromyalgia are contraindicated in people with Ehlers-Danlos. People with Ehlers-Danlos don't really respond very well to narcotics anyway because we lack a certain enzyme needed to process them. And PT techniques used for fibro are contraindicated in people with Ehlers-Danlos and techniques allowed for people with/post op from TOS are very limited. I can't strength train and I can't stretch which leaves me with manual therapy that I'm responding to in the hours afterwards but don't hold long-term.
Anyway, because it took so long to get a diagnosis I don't have any long-term specialists and my PCP moved to another practice that doesn't accept medicaid! My rheumatologist has seen me once. My surgeon has seen me twice, three times if you count while I was hospitalized.
I have complained about lack of concentration, fatigue, pain etc. to all of the specialists over and over but they never really seem to take it seriously. Tell me that they can't find a reason for it and toss me over to the next one. So while I absolutely, without a doubt in my mind know that I fit into social security's definition of disabled, I am not sure that I can prove it because no doctors have known me long enough to know that I tend to under-report, that I have a high pain tolerance, and that when I say I'm having trouble with something not only do I mean it, I am absolutely not exaggerating.
Do I get documentation from every doctor I've ever seen for these issues to show a timeline? Even the ones who said there was nothing wrong with me? Do I bother showing them the TOS issues when my doctor has said that has been fixed by surgery?
I hope when I see my rheumtologist in May that he will listen to what I have to say, fill out some paperwork for social security, and prescribe some medications to show that I really do want to feel better and would prefer to work.

If you can get additional documentation I would submit and simply wait for the Examiner to approve or deny. At that point you'll have more information and might have a handle on how close you came to approval. Being so soon post surgery doesn't make things easy.

A thoroughly documented application can be approved in 3-4 months. If you don't have documentation and go about the process haphazardly, it can stretch into several years.

While it's true that filing early can mean more backpay, it's not uncommon for ALJ's to change the alleged Onset Date to one that is supported by evidence.

SS may send you to their docs, at some point and that could help provide documentation in your favor or against.

Perhaps someone else can address whether having a baby will make an examiner or ALJ question your ability to work, since you're a new SAHM and it can be more than a full time job. I remember being asked lots of specifics about the care of my son, who was around 8 when I started my first application.

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Not to "speak for" BrainPatch, but I didn't get from his (I think BP's a "he", but my brain fog could have messed that up) post that he was offended that you were "knocking" depression and anxiety as disabling conditions. I took his post more as concern that if you thought the SSA didn't count them or if you didn't "count" them just because they aren't your MAIN concern, that you would be doing yourself a disservice by not discussing/reporting them on your application. If you worked in the field, I know you understand that major depression can be disabling all by itself for many patients. For many (and I'm one of them), the depression is not severe enough to be totally disabling on it's own, but it can complicate the treatment of or prognosis for all of the other issues that may be going on. Enough problems with such complicating issues can strengthen a disability claim.

Regarding the TOS and pain ~ Oops ! I'm guilty of taking your original post to mean that the TOS was dealt with, meaning cured/fixed/no longer a major issue. Am I understanding it correctly now that the surgical site has healed well, but you are still having the same pain and symptoms as before the surgery ? Out of curiosity.....What exactly was done for surgery ? Rib removal ? Scalenectomy ? Is this a case of the doc saying, "Well, the rib is out, you should be fine, go away" ?

Has your PT tried myofascial release work ? Is that something that you could tolerate with the Ehlers-Danlos ? I would think that would be compatible, but I admit I don't know that much about Ehlers-Danlos.....and obviously nothing about your subtype.

I want to laugh at the ridiculousness of anyone "pegging" a breastfeeding mom who isn't taking ANY meds as a "drug seeker". If it's any consolation, I'm 48, have great health insurance and crappy WC and I've gotten the same vibe from a few so called health care professionals. I was a home care hospice nurse. I was the evening on call RN. If someone passed away, I went and did the pronouncement.....and dumped all the meds. If a drug seeker plans to illegally take meds they don't really need, they'd be pretty foolish to give up that job (and the great salary) to "fake" severe pain on the off chance they could get a prescription and SSDI (at 30% of what I was making). Grrrr......don't get me going on the "drug seeker" subject ! Many of us on the TOS, Chronic Pain, and RSD forums here have dealt with that attitude. I'm sorry that you have gotten that treatment too.

How bad is your pain now ? What are you doing to manage it ? Ice packs were my best friends for a long time !

I have to ask....Is the pain a severe burning ? It just seems like there are far too many of us here at NT with the triple combo of RSD/TOS/fibro. I hope that you don't find yourself a member of our "club". It sounds like you are dealing with far too much stuff (insert a worse word here if desired) going on in your poor body already.

I would be cautious about planning another pregnancy until you really know what you are dealing with your body and your prognosis. If fatigue and pain are your biggest issues, there are meds that can help with those symptoms, if you can find docs who put the time in getting to know you and your health issues. I use antidepressants, an antiseizure med, an anti-inflammatory, and narcotics to help manage my pain. I recently started on Provigil to help manage my overwhelming fatigue, with decent results. All of those meds have warnings for those who are nursing or pregnant. I think it's amazing that you've been able to nurse this long, especially factoring in TOS surgery......Keep it up ! Once you are done with this little one, I'd love to hear that you get some relief from meds going forward, so that you can enjoy life more. Planning another pregnancy and nursing period would mean more years without the improvement that meds might bring. And, another child means that much more work.

On the flip side, sometimes we have to fight for our positives, what brings us joy. Another child can certainly bring that ! Anything that I do that's "fun"......taking my dog for a walk, getting showered/dressed/made up for a night out with friends, having a meaningful conversation with my 16 yo , 6'3", 240 lb son while he sits on my lap so I can give him a backrub......it ALL costs me. Almost any activity makes the pain worse. It's hard to be a happy camper, though, if you are stuck in bed knowing life is passing you by. Suffering through some worse symptoms to be able to get up and enjoy life is worth it to me. If you have a vision of what you want for your family, in this case, adding to it......I understand not wanting to let your symptoms stop you from doing that.

You've got a tough decision on that one ! I wish you well in making the best decisions for your family.

Finz, you get it. Thank you for that... not many people do these days. In order (since brain fog is a big issue for me as well):

I did not feel that I offended him but when brainpatch wrote that depression is a big deal I recognized my error. Working in the field, I've always been very respectful of my clients as I would want others to be respectful of me. Anyway, I just wanted to make it clear because I'm sure there are people on this board struggling with depression and seeking SSDI solely based on that and I did not want them to feel even worse during what I'm coming to learn is a very stressful application process!

Anyway, regarding the TOS... it's hard to know what is causing the pain. Does it really matter? I had a bilateral first rib resection and scalenectomy. There is no surgery for Ehlers-Danlos nor fibromyalgia. All of them are treated basically the same- PT, medication management etc. Just the types of medications/therapy needs to be watched. I've had myofacial release with some great relief of my stiffness which was wonderful but no effect on my pain. I don't get burning pain. It's always a deep, diffuse aching pain with occasional sharp pangs in unexpected places. I get nerve pain down my arms if I do too much. My TOS surgeon has done what you said- rib's out you're healed! The doppler ultrasound does show improvement in the blood flow (lucky me had AVNTOS) and my relief from much of my arm symptoms reflect the improvement. The pain in my back and neck has stayed the same so he thinks that I have another issue. My rheumatologist thinks I have scoliosis (I'll know early next month when he reviews the x-rays with me) and has dx'ed me with fibro and EDS both of which cause pain. Yippee! To top it off, now that I'm paying attention and am not in denial I'm notices a LOT of subluxations during the day. They're easy to ignore because I'm so loose they don't really hurt but they cause pain later. Like you, I pay for what I do during the day later. There's a price for everything.

As for being a "drug seeker" I got pegged because I had a list of meds I was okay with taking while breastfeeding. I did my research, talked to La Leche League, researched via toxnet, okay'ed it with my baby's pediatrician, and contacted the InfantRisk Center to make sure that I had a list of meds in all sorts of categories during my surgery that it was okay for me to take without dumping my milk. That ticked them off and they thought I was seeking. Because seekers commonly run around with a list of safe antibiotics, blood thinners, and anti-nausea meds along with the acceptable narcotics and muscle relaxants. It irritates me too. I worked CPS for long enough to know what it does to a parent and I would NEVER do that to my child. Regardless, those with EDS lack a certain enzyme to process narcotics correctly so they aren't as effective. I can't even GET high on narcotics! lol.

Oh, you crazy antibiotic "junkie" you...... :p

Have you taken narcotics recently, like just after the TOS, surgery and had no or minimal relief so that you KNOW they don't work for you ? Or are you and/or your docs just figuring that they wouldn't be a viable option ? I know it wouldn't help you now anyhow, because a constant pump and dump won't feed your little one......I'm just wondering if narcotics for pain relief might be a viable option in the future if the traditional first and second line meds don't do the job.

Narcotics frequently don't work great for nerve pain, which I have from RSD, but they do work for MY nerve pain. I also get a lot of help from Neurontin. Narcotics do squat for the pain that I deal with from bilateral hip bursitis, bilateral knee and elbow tendonitis(es) which my docs believe is relatated to my fibro. They also don't do much for my more minor aches and pains from the fibro. The Cymbalta that I take (which is for the pain and my depression) helps MUCH more than narcotics for the aches and pains part. Anti-inflammatories (I'm on Feldene now, used to use Naprosyn or Motrin) are the best for management of my "itis-es" after the prn steroid injections. I'm assuming that none of these "typical" meds for these dx's are approved or ideal for nursing moms. I'm very attached to my non prescription pain management tools too......like ice packs, heat, hot tub, TEN's, relaxation, visualization, rest, stretching, massage (not that I can afford a "real" one now), and an assortment of muscle sprays/rubs/ointments, but I can't imagine being limited on taking the prescription meds that help me so much.

Sitting here trying to think of anything else that might help with the pain. Traditionally (not that that makes it a "rule"), deep aching "means" bone pain. Is the pain worse when you are standing, walking, or even just sitting up and better when laying down in just the right position ? If you raise your arms up and push down on the top of your head (smush your head down into your neck and body) is it worse ? I'm wondering if the subluxations are causing some bone on bone action which is triggering pain. If so, cervical traction might give some relief by stretching those vertebrae apart.
If they can figure out what's causing the pain, that can point them in the right direction for treatment and hopefully, some relief for you.

Yes, I was on narcotics post-surgery. They help, but not as much as you'd expect. Pain-relief wise, it's enough for me but I don't get the "fun" side effects that drives people to addiction. I used to have Tramadol and that worked really well until I developed an allergy to it. I also cannot take high doses of Naproxin- I get vertigo and very nauseous.
Narcotics are safe while breastfeeding believe it or not. The meds for nerve pain (gabapentin etc.) are not. Neither is Cymbalta. Provigil is safe while breastfeeding and I would really like to get on that so I can stay awake during the day.
Ice packs don't help much. I don't have swelling anyway but heating pads do help and I use one almost nightly. Massage helps a lot but only for a very short period of time afterwards. I usually get my significant other to massage me before bed so I can fall asleep.
The last time I had a cervical x-ray it showed that I was almost bone on bone in three different places so it is entirely possible that my pain is bone pain. I know what nerve pain feels like and I get that down my arm and sciatica. I've had traction before and it helps but only with the chiropractor machine, not the gentle manual traction you get at PT.
You hit the nail on the head with the reclined position. If I get in just the right position while laying down I can get to a point where I feel pretty decent. But not much of life can be lived in bed so I do have to move about at some point or another. My arms have to be perfectly supported but not too high up. My back has to be supported from top to bottom. It's a whole process lol.

I'm stunned any narcotics would be on the breastfeeding "safe" list. I guess this old dog can still learn something new :winky:

People taking a reasonable narcotic dose for their pain level don't get the "high", the narcs block the pain receptors and there is not enough med left to go to the la la land receptors. They might be worth a shot again if your pain is unmanageable and the "big IF", IF you have the support of a doc who wants to help you manage the pain.

I got some relief (for awhile) after my chiro sessions with manual traction during my sessions the first few years of my pain issues. Then, WC stopped paying, no big surprise there...... My chiro was able to order me an at home unit that is similar to this: http://www.lgmedsupply.com/defusppopu.html I don't NEED it everyday anymore, but it REALLY helps me when I have a bad flare because I've overdone things. When traveling, it really took up most of my overnight suitcase, so it wasn't practical to use/take with me if I was out of my house.....which 9 times out of 10 is when I overdo things.

When I was ordering a TEN's unit online, I found this more portable (and cheaper) model : http://www.lgmedsupply.com/ponethdel.html.

Surprisingly, morphine is actually the safest while breastfeeding. That's because of it's low bio availability. Only 2% of what mom takes gets into her breastmilk because the serum levels are so low then baby can only process 70% of that medication. So the actual amount that baby gets is negligible. Vicodin is also acceptable but only doses up to 20mg per day can be taken. Codeine is off the table because some people are unable to flush it out of their system and if their baby is one of those people it can get really dangerous really fast. It's really interesting what is actually safe while breastfeeding if you look at the research done by Dr. Hale who is the only person out there actually studying how medications move in and out of the breastmilk. Drug companies just say it's not safe to cover their butts and doctors who prescribe medications and look at the Physician's Desk Reference believe everything is unsafe but if you look at the actual lacation categories you may be surprised of what is and is not okay. :-)