Since December 2009 ( 18 months in ) , I have been writing a book about my experiences with my illness and my path to becoming disabled .
I thought I would start with my Dance of the specalists
This is lifted directly over . So this reflects where I was at in December 2009 .
The Dance of the specialists
The pace of investigations can be painfully , in my case literally , slow . I saw many specialists . The first round , in summer 08 , led to the conclusion of gastritis , but very little else and no explanation for the excessive nausea and fatigue and night sweats . In October , after being discharged from the medics with very few conclusions , my gp referred me to rheumatology due to the muscle pain . The rheumatologist did his work up , excluded everything and concluded I had fibromyalgia . This fitted in some ways but not in others .
In November ,my back and side pain was worsening and I was needing increasing pain killers . By this I mean , no sleep , rocking in pain . This was concerning my GP so he referred me back to medicine and to neuro , to exclude MS and brain problems ( no not mad cow disease ) . The neuro Drs started their work in Feb. 08 . In early march , I went to see the medics but they didn’t feel there was any more work to do . This concerned me as they didn’t have the recant letter from my gp and my pain was so much worse and I hadn’t had my back or pelvis scanned at all .
A week later Dave and I managed to get away to see my children but when we went onto Northampton I had to spend 3 days in bed with the pain , sweats and my walking was so painful . This led me to write a letter to the PALS department at the local hospital . Because I was living at the refuge I was between Gps . One had my notes but couldn’t treat me , the other could treat me but had no idea what was going on .I was concerned that no hospital consultant was taking responsibility for me and I felt the one I was referred to hadn’t given my detioration in condition any credence . I was also very worried that by this point I had had 5 reactions requiring adrenaline and the A&E staff were getting concerned that I hadn’t seen an allergist and that we couldn’t pin down what I was reacting to.
The lady from PALS was helpful . She contacted the consultant responsible re medical issues and advised me to ask my gp directly for referral to an allergist and gyne .
This was all in march
In April , as I have said I had 4 reactions . After the 4th I spent 3 weeks in hospital having investigations and getting stronger . The Drs had many thoughts about what may be wrong but the testing came out negative . The neurologists in particular took time to scan my back and pelvis to exclude any cancer in this area . It was all negative This was good . It also meant that we knew what I didn’t have which allowed me to begin to settle into being .
The conclusion to all these tests was a condition called fibromyalgia made worse by endometriosis and allergies . Fibromyalgia is a pain condition in which your body feels pain and sends pain signals to your brain , when it is minimal , or not present . This gives lots of connected problems . Shaking in arms and legs ,headaches , extreme fatigue , pain in chest and jaw , irritable bowel syndrome , headaches, and raynards disease where your fingers and legs lose circulation . I have had most of these . Fibromyalgia is a diagnosis by exclusion so every other cause for the symptoms’ has to be excluded .
My time waiting for the neurology tests was interesting. For me personally , MS or another long term progressive illness was more scary than a ( treatable ) cancer . I don’t know if your aware but the scariness of cancer is most dependant on where it is and how early its caught . So a nice early lymphoma to me was less scary than something that would be with me forever. So its MRI brain day and im in the scanner . No music as they cant play it for head scans . It was at that moment it hit me . A huge sense of relief that we would find the answer , coupled seconds later with the “OH shit “, moment of they will find the answer .
Endometriosis is the growth of womb tissue in other places in the abdomen other than the womb. It then behaves the same each month , by building up then bleeding . Because it has no escape route it leads to extremely bad pain which needs strong pain killers to deal with .This also leads to scar tissue forming which affects the bowel and other abdominal organs . It can grow as far away as the diaphragm ( under the lungs ) . So the endometriosis was giving its own pain and was irritating the fibromyalgia every month . I wanted to kiss the gynaecologist when he said that he thinks I have this and he would like to plan an op to confirm and ( hopefully) treat it . So im on a waiting list .
The allergies became a major problem …………………………. I have had 16 in total now with an A&E requiring reaction. These consist of rashes , intense itching , swollen face and mouth , sweating , shortness of breath and throat closing. They wipe the floor with me and each irritates the fibromyalgia.
I now get tired and my lips go blue and I get short of breath on more than 3-4 steps The reactions I am having now are being controlled by pills as emergency treatment on top of my normal meds. These reactions though are taking me through the same recovery process as before . But my recovery point is now furniture walking + wheelchair scooting on a good day . Wheelchair inside on a bad day pushed by someone else , using a commode and having everything done for me .
This inculdes personal care .
So there it is , more offerings soon
Endometriosis was later excluded . But at this point it was my explanation for my abdominal pain .
Josie