Sorry for the delay in letting everyone know what happened with the Rheumatologist appointment on Monday. I really was wiped out today after the trip and spent most of the day in bed to be perfectly honest. I am having a hard time accepting the news I think... So bare with me if this doesn't make the most sense ever or I leave out some details.
The preliminary diagnosis is Ehlers-Danlos Syndrome (EDS) and Fibromyalgia.
EDS is an inherited disorder that causes a genetic defect in collagen and connective-tissue synthesis and structure. It is also known as Hyperextensibility Syndrome. There are quite a few types of EDS and right now we are not positive as to which one I have. In order to know for certain that would require genetic testing and knowing the type doesn't appear to be necessary. EDS is characterized by (1) joint hypermobility, (2) cutaneous fragility, and (3) hyperextensibility. One estimate is that 1 in 400,000 people have some form of EDS from mild to severe. Some clinical manifestations that allow for diagnosis include many things from muscle weakness, muscle pain, tendency to fall down easily, poor body control, difficulty walking, bruise easily, joint pain, white and soft skin, underlying vessels are easily seen through the skin, skin has a doughy feel, skin is easily hyperextensible, molluscoid pseudo tumors form at scar sites and pressure points, fragile skin, poor wound healing, joints are hyperextensible, joints dislocate, skin scarring, skin scarring with hyperpigmentation, varicosities, early onset of osteoarthritis, nearsightedness, scars that stretch over time, and scoliosis to name just a few. The management and treatment for EDS is basically to protect the joints and the skin while treating the other symptoms as best possible for the patient.
Oddly it appears that EDS and Fibromyalgia occur together at a high rate of incidence... Lucky me.
If you want more information on Fibromyalgia I have posted about it before here on my blog so just check out the previous posts.
I am to see the Rheumatologist again in 1 month. The current treatment plan for this first month is to get me to regain restorative sleep. This means I get to start some new medications that will hopefully aid in getting to the restorative part of sleep. It also means that I am not to be woken during the night which we are trying to figure out with the dogs and the different schedules that DH and I keep. Another thing that the Dr. said is that there is no such thing as too much sleep for me right now. My DH isn't too happy about either of these orders from the Dr. but I do know he wants me to get well so he is trying to respect her opinion. I honestly think that if I could just wake up and feel refreshed and not still exhausted that things would/could be so much better.
I do appreciate that she is going slow with this and starting with the least dangerous medications possible. Also that she isn't trying to throw too many things into the mix all at once is a good thing in my book too. Yes, it might take longer to get me well this way but it should limit any potential issues that may arise due to medication problems and it should help us to see which things work and which don't much easier. Actually doing it in a systematic stepwise fashion could get me to feeling better faster than throwing a bunch of medications at me and praying for the best considering how many drug allergies I have and how they have a way of not acting as expected.
I know that I am not going to start feeling better overnight, and that I never will feel entirely well again ever. I am working on dealing with that and coming to terms with it. I need to get to a point where the pain is manageable and not all encompassing and I think that we can do that...
