I guess if it was me and my Dr. didn't understand, I would find another Dr. asap. You have to find what works for you as everyone is different. Have you tried a Pain Mgmt Dr?

You could always just get information about what an aid would do. I have had my Dr. write me a script for a wheelchair, and have used it. When you're so weak, a wheelchair does help, although its hard on hands and arms, especially when they're weak, but at least it helps when your legs are so weak you can't stand or walk.

Hang in there, it does get better with the right Dr. and with the right pain management.

My last doctor told me (in reference to using a chair for a large convention I wanted to attend) that she "didn't want me more disabled then I am" My current doctors office offers free chiropractic care, a vision clinic, and acupuncture (which my insurance doesn't cover).. I almost did get a diff pulmonologist because she seems to have the biggest issue with me over my Transgender issues but she knows what she is doing in her field.. My doctors office currently has been able to prescribe the Testosterone I'm on (which does also help some fatigue) and is very understanding of my other issues such as my PTSD and Autism unlike any other doctors I've had before. It just seems impossible for me to find a doctor that would be understanding of ALL of my disabilities and how they may all affect each other. I have looked at a lot of other doctors but I've always had a problem with them for one reason or another. Mainly due to my mental health disorders and Autism Spectrum. They don't seem to know "what to do with me" because I communicate differently and have a lot of invisible illnesses.. Some even seem afraid of me..

(sorry for a double post but I cant seem to edit my last one)

Another issue is my pain itself isn't the biggest of the problems. I've been in pain most my life (physical and mental) it's the other problems that bother me the most. I can generally "manage" the pain but feeling like a ton of bricks, having weird sensory changes, unable to keep my walking pace any more etc. are what upset me most..

To copy a part of my symptom list:

Vision Changes throught the day (depth perception) and seeing cloudly / blurry spots occasionally- Ocassional double vision
Ocassional Numbness / tingling in hands, legs, feet and top spine
Ocassional Muscle Spasms- Eyelids, Arms, inner Theighs, lip, Neck
Tiredness - Sometimes extremely or dissociative(?), Periods throught the day so tired feel like Im really pushing myself to move- out of the blue
Ocassional using the bathroom problems- Spasms / control / forgetting to go / go even tho dont feel it full, sometimes going frequently
Rarely Stabbing pains in back for no reason occasionally after showers / baths
Common Memory problems- forgetting names of common objects, forgetting my destination, loosing words, forgetting the date / year
Random Chills / seizzure like(?) associated with twitches- makes whole back / body twitch to one side and buzz in my head associated with extreme stress
Knee pains / problems- cracking / stability bending
Ankle pains / spasms - cracking etc.
some pains in hands / joints and carpel tunnel
Balance Problems
Increased Light Sensitivity
Increased Anxiety Problems
Increased migraines and Headaches
Dizzy Spells when bending down or sometimes out of the blue sometimes accompaned with seeing spots
Increased sensitivity to pain- worse on more domnant arm and leg
Lower back stiffens up if sitting or standing for long periods of time
A couple falls

In regards to pain as well: I cannot use most pain relievers.

Tramadol: causes apnea episodes during the day
Tylenol: Causes me to hallucinate a scent
Ibuprofen: Causes a migraine or headache and vomiting

I am allergic / sensitive to a common powdered pill medication filler. So was one of my brothers who passed away. But am uncertain the exact ingredient. This also makes it hard to really be on anything.

I do / can take Aleve gel capsule when needed..

You need to call your insurance company a.m.d see if they will pat for an aid, most of them don't. You also need to look into going to a Teaching Hospital. They can often be helpful with complicated cases. If you aren't in counseling, you need to be because the stress just makes everything worse. I am assuming that your Dr won't prescribe you a.ything like hydrocodone for the pain. If your insurance won't pay for an aid, you may want to look into applying for Medicaid because Medicaid will pay for Long Term Personal Care Services which is an aid. For Medicaid an Evaluatir from the state will come out and determine what you need help with and his many hours a week you need the help. They will only do things for you. For example if they do your grocery shopping, cooking, laundry they will only do yours and not ant of your roommates.

I'm on disability (SSI). I'm on state insurance (OHP) which is a form of Medicaid. All I need is an evaluation for an aid. I am already in counselling. I've been in counselling most of my life (mostly school therapists since elementary school but "professional" counsellors since High School)

BTW I was on SSI before I was dx with Fibromyalgia.. If that gives any clue as to severity of my other disabilities as well..

As mentioned previous I can't be on tramadol AND OR any opiates because of how severe my sleep apnea is. When I am I have apnea during the day. Meaning I don't breathe for periods of time. I can't be on hydrocodine. I can't be on any psych meds because they cause me to become suicidal 24/7 AND OR Bi-polar and yes I've been on MANY. BOTH Anti-D and Anti-Psychs as well as ADHD medications (as a guinea pig in foster care- among others) And kept in residential facilities for most of my adolescence.. Which caused more trauma then help and makes me very doubtful and not trust any type of medical professionals.. (And having this fibromyalgia makes me fear that kind of life again- which I fear more then death itself)

When going to apply for section 8 choice voucher the Housing co-ordinator told my room-mate all she needed to do was ask for me to be evaluated so she can have a break from all my issues and get an aid.

She and I have actually both taken one of the classes to be aids ourselves so I have a somewhat idea of a few things they can do / general idea how it works. The problem is determining "how disabled" I am and what an aid could do. I know they could do grocery shopping for me. But otherwise I'm not sure what they could do. Maybe help me with my weekly T injection? But prob not cuz the aid at my doctors office found out he wasn't supposed to be helping me with it. SO I do it myself now.

Otherwise I already have medical transit for medical appointments which I just got around January. But that doesn't help me get around to the grocery store or any other kind of shopping. My anxiety basically forces me to NEED to get out at least once a day otherwise my brain goes NUTS with NOTHING to do. And I become impulsive and self-destructive.

I see a Therapist Once a week. I see her for the DID / Severe PTSD (if you don't believe in it) and my Autism Spectrum issues but she can't do anything about my Fibromyalgia. I've been though extensive DBT and CBT and have a lot of my mental health issues manageable at this point in combination with a Service Dog (which I am retiring soon- but I am training a new one atm)

I'm sorry if I seem combative, I'm just extremely frustrated with my complex situation and all the stigma associated with ALL my issues and miss-understanding.. And the limitations they each cause..

Aids can do your grocery shopping for you, if the evaluator determns you need help with tgsg, help you bathe, get dressed, prepare meals for you only, laundry, etc. They Cannot do anything of a medical nature. They can Aldo go with you to your drs appointments. The evaluator from the state will determine what you need help with and how many hours a seek you can have that help. Things are broken down into segments. You do have to coorperate with the aid and be able to self direct.

I usually have to have SD or friend go to dr appointment with me.. I jus don want to become lazy or stuck home all day or institutionalized again... Far as self direct.. prob can? but lately romie been need re-direct me when we r going places cuz I get lost easy... :( and forget where i am.. etc. :(

You will need to be able to tell the aid what to do. For example, is an aid Washateria your clothes you will need to tell them how to operate the machines and how much detergent to put in and what clothes are your and the ones that aren't. They can go with you to the store and the doctor or the Washateria, etc. The days that are set up for them to come on they will only have a certain amount of time they can be with you so they will need to be working the entire time.

Their education and training is very limited so you will have to be able to self direct. If the evsluator is concerned this may be a problem you may want to give the evaluator permission to talk to your Dr. I wonder why your Dr hasn't suggested an aid? Although they know very little about what the criteria is. If you are approved for Long Term Personal Care Services you will be given the aid for the same amount if hours every week.

The most important thing to remember about an aid is that this person will take a huge burden off of you which will allow you to be more functional in other ways. For example, if the aid can clean your place, do your shopping (and putting away) deal with your laundry and help transport you to dr visits, all of the pressure/stress related to these tasks will be gone from you. If that is all the aid does, it will be a big help. I have worked with people who have relied on home aids (in my previous life when I was a therapist) and the help they were given just made the rest of their life more functional.

it may help..? But for instance I already get medical transit. I currently get a friend to go with me to my doctors visits. Mostly because my Service Dog is mid-retirement due to knee problems- but once I've trained my new one I'd bring the Service Dog because a person doesn't or isn't able to provide as much support as my SD is-ie: it looks awkward and I don't expect a person to physically re-direct me in a dissociative episode or autism overload but a SD can. Nor do I expect the average joe to understand what my episodes look like nor how to respond to one.

I half the time don't plan my finances out to really afford laundry all the time mostly because the machines take quarters and its too much a hassle to find somewhere to turn my bills into quarters.. So maybe I could ask the aid to go out and turn my bills into quarters?

I have thought about getting a payee again but they charge me to manage my money but I need help paying off a bunch of debt because I have some impulsive spending off and on due to alters and anxiety / boredom / frustration. Like tonight where I can't sleep and wish I could walk to the 24hr store but feel obligated to have to buy something if I do. These activities / coping skills I;'ve been sing to manage my severe anxiety for a long time but the fibro now limits my coping skills because I can't physically keep pushing myself like I used to and now I've been depressed / angry / upset all the time. My roomie offered to basically be my payee / save money / help me by holding my credit cards so I can't use them.

My doctor hasn't suggested an aid because "besides this list of things we would see in the elderly you are otherwise young and healthy".. I am also pretty good at hiding my physical and mental pains due to trauma and learn dissociative behaviours.. I even hide them from myself a lot of times.. For instance The night before therapy appointments I sometimes have a break down but by the appointment / when I'm speaking to the T my brain will completely black slate / dissociate the issues / whatever was bothering me until after the session. In which I have learned I ALWAYS have to have my SD with me after the session because the rest of the day I will end up having episodes if I don't. But not going to the Therapist once a week our system gets un-regulated and we start to spiral. So it's more about who is ready to talk.

My therapist was the one to suggest medical transit which I got recently in Janurary and seems to be the only one to sorta understand. But she is a bit clueless as to the nature of my physical disabilities relating to the fibro. But understands that I keep asking myself "how disabled am I?"

I don't want an aid to do shopping for me because I'm on such a limited budget and I am on a specific diet to reduce my weight and intake of preservatives. I am also allergic to sulfites (a preservative) and they cause migraines so any canned food I have to read the label. I didn't on one of the food bank cans and had a HUGE migraine. :( I also get a vitamin drink at costco but use my friends costco card to get it because I don't have one. I also am picky about things like toilet paper..

Although I wonder if an aid could go to the food bank for me or not? It would def help. Though atm my roomie is going to the food bank for both of us. I just can't carry all that food back on the bus all the time. Every time I do I feel like my back is going to break. (But I do it anyway..)

Any other things I can think of would be potentially helping me cook. Lately when I've had extremely dissociative days I've not been cooking my food long enough.. esp chicken and end up eating it anyway just cuz I don't want to have to turn the oven back on... -.- Yea I know bad.

I've seen the aids at my neighbour across from me walk her dog (she has MS) So I guess help doing that would be helpful also because It's hard to take both dogs out every couple hours. However the puppy will soon be able to hold longer I hope. (I have a 3 1/2yr old mix breed semi-retired SD and a 14wk Black lab Candidate / SDiT)

Taking care of the dogs lately I haven't had energy to set up an appointment to see the chiropractor which I need to see again cuz my lower back is seriously feeling like it's getting stuck and I'm afraid of bending or when I do bend it doesn't bend right / all the way.I also need my wrists / carpel tunnel adjusted and I think I hurt my shoulder last week carrying a backpack..

You may not qualify for an aid. Medicaid aids don't take dogs out for walks or care for them. Although other aids do.

Your roommate can be your Representative Payee, if you trust them and SSA agrees. If you're not spending your money wisely, SSA may require you to have a Rep payee when they do your next non medical review.

I used to have a payee when I was first on SSI but I got a letter from my psychiatrist to manage my own money because I couldn't afford bills having to pay my payee. (I eventually ended up homeless for 2yrs) I'm on section 8 now (so it's affordable) and I don't miss payments or due dates or anything, I just can't get ahead on my credit card debt.

I'm not sure when they will do another review cuz I missed the last one due to being in vocational rehabilitation program and they still have me listed despite not being able to find me any kind of work I can do nor talking to me at all at this point.. (for like a year) Even though I left voice mail.. I truly do want to work and want to be as functional as possible.. But the reason I'm in so much debt was a lot more related to having my last job and using a ton of money because I was stressed and think I need things.

Our current plan is to have my roomie just hold onto a couple of my credit cards so I can't use specific ones until I pay them off and close a few.

I wasn't sure I'd qualify for an aid either. (nor do I actually want one) It's just something my roomie said I may need soon. I think because she is tired of helping me by herself. But I'm not trying to put a bunch of burden on her. And I don't know all the time what I am doing or not doing that needs help..?

Nowadays she wont let me move furniture sometimes (even tho I will sometimes when she isn't here) because she is afraid I'll break my back. I'm just a person who will keep doing things until my body breaks down.. Or I can't move any more.. no matter how much pain I'm in.. I've always pushed myself physically my whole life and it's hard to not push myself or find how much I should be doing vs shouldn't be.

But she also tells me I'm becoming very sedentary which I don't want to be.. And infuriates me. So I just feel like a big contradiction which just makes me depressed because contradiction is what my biological parents used and I don't want to be like my parents..