Update: Saw my doctor

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Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 3/6/2017 6:37 PM (GMT -7)   
Hey guys,

Finally got in to see my doctor. Talked to him about CRPS but he states I don't show the symptoms and it's simply not that. Talked about pain management and he put me on Dilaudid 2mg 1-2 pills 4x/day as needed. Have a follow up in a couple of weeks. He states he doesn't want to increase the dosage more than the next step up if needed, because any higher and it's just that never ending cycle of higher and higher tolerance. So basically these have to work at this or the next dose up or else no narcotics at all. Frustrating.

So far one Dilaudid has helped since I saw him earlier, and I'm going to try and use the bare minimum. I told him it's fine if the pain is there, as long as I can actually have some sort of quality of life and not just be in pain. He's confused as to why the ketamine works when I go to the hospital on the days I can't control it. Doesn't understand how sometimes I go asymptomatic and seem normal, etc.

Thankfully he said he'd call and talk to my new doctor when we move, because he feels a note just isn't going to get all the concerns addressed and wants me to maintain good care, as well as reminding me that I needed to reevaluate my ADHD meds when we move (which I wanted a mental health check done on me anyways).

Frustrated because our province came down hard on narcotics, and frustrated that he is so quick to dismiss narcotics because all the new chronic pain things that are coming out basically preach against it. I don't want narcotics. I want relief and if narcotics give it to me...Well then I guess that's what I need for now.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 679
   Posted 3/6/2017 9:25 PM (GMT -7)   
Lessa:

Well . . . your follow-up narrative is both saddening and uplifting.

Saddening in that you have no differential diagnosis to explain your pain and trophic skin changes and autonomic nervous system effects. Saddening in that you have bare minimum coverage of medication for pain control.

Uplifting in that you have a physician who does seems genuinely caring of you and who is agreeing to act as a bridge in establishing care with a new physician when you move and relocate. Uplifting in that you have at least some narcotic medication to ease your pain. The dilaudid dosing may be insufficient to quell the totality of your pain but it will at least quell its full force.

I think you are wise to try to use the bare minimum of the dilaudid. That would keep your physiological tolerance at a minimum and will make each dose the most effective that it can be.

2 mg dilaudid is the lowest dosing pill available. Dilaudid is available in 2 mg, 4 mg, and 8 mg pill form. I take the 8 mg tablet.

If not CRPS, what does your physician offer as a possible counter diagnosis.

You have several of the symptoms of RSD/CRPS, including several of symptoms that I experienced with RSD of my right leg/knee due to the trauma of 3 arthroscopic surgeries in the span of 3 months. My knee said "enough is enough" by displaying RSD. My knee was not consistently angry and red in appearance, 24 hours a day, hour to hour. It morphed and changed in symptom presentation, waxed and waned. There was almost a circadian pattern to when symptoms were at their worst.

Take the offering of dilaudid as positive news. It is more pain medication than you have had to date.

My leg and knee did recover with time. It was a gradual improvement, but it was improvement. I hope the same for you. Gradual improvement over time.
- Karen -

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 3/6/2017 10:23 PM (GMT -7)   
Karen,

He doesn't know and says he's so unsure of what's wrong with me. It's frustrating because things like pain pumps, etc I can't access because I have no firm diagnosis. I tried to reason with him about the CRPS but he sides with the pain doctor who has more experience, because my doctor is newer. Frustrating. I don't swell, but the pain is there. The Dilaudid is helping to lower the pain to a manageable level which is all I was hoping for.

The little amount of swelling I do get can be attributed to sprains and strains and just old injuries. I feel like everyone has given up. I hurt and no one knows why, and is too tired to find out anymore. I really hope moving gives me a fresh look that way.

Thanks.
Undiagnosed chronic peripheral neuropathy, chronic depression, chronic insomnia, mild sleep apnea, PTSD, ADHD, red/green colour blind, gall bladder removed (Dec 2013)
Meds: Cymbalta 90mg, Effexor 150mg, Adderall 40mg, Trazodone 100mg, Amlodipine 5mg, Vitamin B12, C, D3, magnesium, cranberry pills, multivitamin
Allergies: Macrobid, Ritalin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15311
   Posted 3/7/2017 5:43 AM (GMT -7)   
Lessa, perhaps once you move & get a new dr things will turn around towards getting a diagnosis. Often getting a fresh set of eyes to look at the overall picture is beneficial.

Although you were given a low dose of Dilaudid the dr believes in your pain. Here in the states young people have a difficult time getting narcotics. They get told the same thing you were told by your dr. It has been this way a very long time.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 3/7/2017 1:37 PM (GMT -7)   
Susie,

It's the same in Canada, I'm lucky and thankful my doctor believes me and is going to vouch for me. He's a good Dr, and tries his best. But I know that if you've been staring at a problem too long you can't always find the solution that sometimes is right there.

The low dose of Dilaudid is helping, but he's very against long acting pain pills. So I am just staggering my cymbalta (two doses) and Dilaudid. Hoping I don't get any breakthrough pain and lose my pain meds.
Undiagnosed chronic peripheral neuropathy, chronic depression, chronic insomnia, mild sleep apnea, PTSD, ADHD, red/green colour blind, gall bladder removed (Dec 2013)
Meds: Cymbalta 90mg, Effexor 150mg, Adderall 40mg, Trazodone 100mg, Amlodipine 5mg, Vitamin B12, C, D3, magnesium, cranberry pills, multivitamin
Allergies: Macrobid, Ritalin

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 3/11/2017 1:15 AM (GMT -7)   
UPDATE: had a nasty slip and fall because of ice and snow, despite wearing winter boots and using my cane and taking it slow. Gravity works, btw, no one else needs to check that for a while!

ER doctor saw me (I sprained my ankle bad again, ugh), and stated that he hasn't seen a paitent with this obvious of a presentation with CRPS and no hard diagnosis, writing a letter to my GP. So....I may have my answer, what I had feared. CRPS.

I feel like I'm grieving l over again. To top it off our husky is really sick and it looks like the only option is to end her suffering, and put her to sleep. Not helping my pain sad.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 679
   Posted 3/11/2017 8:29 AM (GMT -7)   
Oh Lessa . . .

I would wrap you up and place you in a gilded bird cage to keep you safe, if I could (humor and a smile intended).

Ka Boom. Landing on a ground surface of ice and snow is a hard fall. I am sorry to read of your harsh landing and necessitated trip to the emergency room with a severely sprained ankle. Soft tissue injuries can be more painful than a bone fracture.

The silver lining in your unfortunate fall is the the ER physician has validated the finding of CRPS. I would take this as a "win," even though it is a difficult diagnosis to receive and process. Identifying the culprit of CRPS will give you direction and treatment options. Recovering from CRPS is a slow process, but there is real hope for improvement.

The RSD/CRPS that I experienced in my knee/lower leg following arthroscopic knee surgery was a surreal experience. it took 2 years to resolve, but it did resolve. I took a very mindful approach to working with my knee and leg. While I will not say that the experience was easy, I was able to restore my leg function and dampen the hyperesthesia. I will keep looking for a rainbow to help ease your pain.

I am even more saddened to hear about your fur-child. I have a deep bond with my little tea-cup Maltese, Molly. Molly is 14 years of age has had recent health issues (inflammatory bowel disease and GI bleeding). The prognosis was quite grim at one point. Molly made it through . . . but her health is fragile. This little dog and I are one. I cannot envision life without her. I can empathize with the pain that you are feeling in your heart watching your beloved husky in compromised health. Our companion pets indelibly leave their paw prints on our heart. I will keep both of you in my prayer.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15311
   Posted 3/11/2017 10:51 AM (GMT -7)   
Lessa, like Karen said, so sorry about the fall but something good may well come of the ER visit. Thank goodness the ER dr had some great medical knowledge.Getting that info in your medical records may help.

I too, am very sorry to hear about your 4 legged baby. I have been in those shoes you are in & can truly feel your pain.To this day, I still have to remind myself what I did was out of love & compassion even though at the time I did not feel that way. Sending healing thoughts & prayers your way.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member


Date Joined Feb 2017
Total Posts : 21
   Posted 3/11/2017 7:18 PM (GMT -7)   
Thank you Susie abd Karen. We bought her some delicious meals, larger than she would normally get. More testing has confirmed that it is cancer that moved from her hips to her heart, etc. She will be put to sleep soon. We are arranging a photoshoot, I wish we had known she was suffering but she never showed any signs, even when we took her for check ups.

It's killing us, but it's obviously for the best. She's getting lots of pampering and love, and we will be cremating her and getting a beautiful urn, so she can always be with us. Both of us have other pets that have crossed the rainbow bridge, so we know she'll be well taken care of in the afterlife. She's only 4 going on 5 on may the 4th (our star wars doggy).

Karen, I have heard of some people's CRPS going into remission, and hope that mine will with appropriate treatment. But I am keeping realistic goals, such as learning to live and manage pain levels to where I have some quality of life. We are moving closer to family, so having that closer support network will be nice. My best friend from highschool lives in Ohio which will only be a few hours drive (plus crossing the border) from us. I look forward to being able to take a weekend trip to her, or having her come to us. I miss her dearly, she is my sister from another momma and throughout all of this, she is the one person who constantly treats me like I'm still the same old Lessa.

The ER doctor had seen me before, she was the one who gave me a low dose shot of ketamine, because she had to examine my ankle she took extra time to really look at my legs, so very she is experienced with chronic pain.

Karen, funny thing it was fresh soft snow, and at the time it didn't feel like a hard fall at all! It took some time for my ankle to swell and for me to realize that I show get an x-ray to make sure nothing was broken, though truthfully my bones seem unbreakable lol I always sprain, or strain things rather than breaks. I'd rather a break, it takes so long to recover from soft tissue injuries!

The Dilaudid is helping, but the fall has caused a great flare of angry white cold electric pain, on top of the usual sprain pain. Because cold causes worse pain I can't ice my ankle and am left popping anti-inflamitories and using elevation, as well as a brace. Thankfully my feet and ankles are usually cold anyways, which is why we think it took time for the sprain to set in.

Thanks again ladies.
Undiagnosed chronic peripheral neuropathy, chronic depression, chronic insomnia, mild sleep apnea, PTSD, ADHD, red/green colour blind, gall bladder removed (Dec 2013)
Meds: Cymbalta 90mg, Effexor 150mg, Adderall 40mg, Trazodone 100mg, Amlodipine 5mg, Vitamin B12, C, D3, magnesium, cranberry pills, multivitamin
Allergies: Macrobid, Ritalin
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