Hi - newly diagnosed

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CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/13/2013 9:16 PM (GMT -7)   
Thought I would just drop by and say 'hi'. I'm Laura, 28 and from Australia. I usually live up in the Chronic Pain forum - my main issues stem from severe Complex Regional Pain Syndrome, gastroparesis and residual pain from multiple compression fractures - but I was diagnosed just yesterday with severe CFS relating to Ehlers Danlos Syndrome.

I didn't have many questions to ask yesterday - was having trouble processing everything - but is there anything crucial I need to be asking the doctor at my next appointment?

Treatment-wise, at this stage he is referring me to an exercise physiologist specialising in EDS and CFS. How do other people manage their fatigue/weakness symptoms?

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cymbalta, Lorazepam, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 2/15/2013 8:53 AM (GMT -7)   
Welcome CRPS to our asylum of solace ;) WE give each as much hope and inspiration as we do information. Which is good since I've never heard of EDS nor have I ever heard of a exercise physiologist. Of course I had never heard of the Epstein-Barr Virus before I contracted it either, that's the form of CFS that I have and since in this country apparently this is like have AIDS
20yrs ago, I've given up trying to force a doctor or change doctors to get just acknowledgement that I have a diagnosed illness, I didn't make it up, didn't know I had it until some stupid Dr. took a blood test and then has her MA call me and say "you tested positive for the EBV, we can't tell you what it is but there is no treatment. And no, the Dr. will not see you."End rant, I'm sorry please don't be put off this page because of my pity party ;(
You will find a lot of both support and information and we welcome any and all new information you bring in as well.
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 2/15/2013 5:59 PM (GMT -7)   
Laura, welcome to the forum, it is nice to meet you. I am sorry for all you are going through, I know how hard it is to deal with multiple dx's. CFS is a hard one to have, there is no medication that will cure it but we can treat the symptoms. Pacing ourselves is a must. You have to use the energy you do have effectively, we do not regain our energy from resting so what you have is what you get. Balancing everything we do is essential.

Some of the newest research says CFS is a symptom of Mitochondrial failure. I have started CoQ10 which is said to help & is needed in mitochondrial production of ATP(adenosine triphosphate). I have been taking it for about a week so I can't say whether it will help or not. I take Magnesium malate for clear headedness & energy & I did some reading on the effects of dark chocolate on CFS. I eat about 45mg a day, divided into several times a day. I have had some improvement with it, I am more alert & on good days I have more energy. I think even my bad days are somewhat better.

I need something to help me sleep so I am on Trazadone to help me stay asleep & Tizanidine, a muscle relaxant to help me go to sleep. Do you have problem with sleep? If so it is important to get it under some kind of control because it is the basic need, without it nothing else works.

Please ask whatever questions you need to & hopefully we can answer them. CFS doesn't have many answers but I have found I am in a much better frame of mind by coming to terms with being ill. Take care of yourself. gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/23/2013 5:14 AM (GMT -7)   
Oh gosh, my apologies to both of you... I've typed that many replies and never quite get to the point of posting them.

Recovery - I'm not overly familiar with them either. My understanding of EDS - at least the hypermobility type that I've been diagnosed with - is that it's a failure/partial failure of collagen synthesis, so you get stretchy ligaments, muscles, over-flexible joints... I mean, I've lost some flexibility in the last few years but I can still easily put both palms flat to the floor with no stretch at all, I used to be able to put both feet behind my head, my wrists and fingers are 'double jointed' and so on. It is apparently also well known for causing orthostatic BP issues, GI problems, fatigue and so on.

An exercise physiologist - I'm just going on what my physio has told me - but they seem to be partly physio, nutrition, blah, blah.. and look at the way the body responds to exercise. However it is they do it, the aim I think is to gradually increase strength and stamina through a whole body kind of approach.

Denise, CRPS is kind of similar in many ways - I have some meds to help manage that because of the almost indescribable pain it causes...it's probably five years now since I've slept under a blanket because blankets hurt. I do take magnesium - I actually have an intrathecal baclofen pump to help with my muscle spasms and muscle pain, but I find the magnesium helps too... I've also had IV magnesium infusions but I get pretty unwell with them - very hot, very nauseated - and we decided that side effects outweighed benefits.

Um, sleep? What's that? Seriously though... I think I was *born* with insomnia. I broke my leg when I was five, and my Mum will still tell anyone who'll listen that it was the first time I slept a whole night through. Even with the meds I'm on, my pain is rarely below a six or seven, which doesn't make for restful sleep. My 'day' and 'night' times are completely abnormal too, I am wide awake all night - more tired during the day, but not ready to sleep because intellectually I know that it's day time, even though physiologically it might feel like 3am. Another issues is that I have enormous trouble with sleep meds. I'm not familiar with Trazodone, but googling it I see it's a TCA...other meds of that class, along with benzos, make me incredibly agitated. I can take low dose ativan for nausea and that's it. The only med I've found that helped me with sleep was seroquel, but that worked a little too well and had me almost narcoleptic on even a very low dose - in just 2 days, I burnt myself 4 times while making tea/coffee, and also ended up with radial nerve paralysis after sleeping very badly on my arm and not being able to wake.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cymbalta, Lorazepam, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump
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