Experience with Pysch
Experience with Pysch
Just found out after two years that I have Lyme Disease!
I was 15 when I had woke up one morning with severe pain all in my stomach and back. After a few days this pain just kept spreading and eventually got to pretty much every part of my body! To sum it up it’s easier to name what doesn’t hurt!! I had many other things like headaches, swelling, poor circulation, brain fog etc... I went to so many paediatricians, speacialist, my family doctor, naturopaths, iredologist, physiotherapy all after I was diagnosed with Fibromyalgia by the second paediatrician. I had a doctor tell me it was in my head, i had another one who was in her 60’s compare her back pain to my full body pain and other symptoms and actually believed it was the same thing, and I had doctors ignore my words just because they believed it was from my mental health issues! After I was diagnosed I did excercises, physio, took medication keep in mind i could barely move from the pain and stiffness!! I started going to naturopaths after a while because medical doctors just weren’t doing anything. I asked my family doctor to test me for lyme disease after naturopaths, friends, and family had all said it sounded like Lyme. So months went by after my family doctor said no to testing me and I finally decide to start looking for more naturopaths and my mom discovers a family friend of ours has a sister who’s a naturopath she set me up with another naturopath who speacializes in viruses which is what she thought it was! I finally started to get answers after going to her. I just yesterday found out I have Chronic Immune Supression, Lyme disease, and two co infections with the lyme disease! It has been such a frustrating journey but I am finally on the right path to getting better!!! #LymeDisease #PatientAndDoctorExperiences #doctorsdontlisten #DoctorsAreDickheads #doctorsdontlisten
Big hugs to those out there facing this, whether you are just at the start of your journey or years in like myself, with still nothing but a load of “all clear”s from many different departments, both NHS and private.
I’ve fought this for what, four years now; doctors sigh when I recount my symptoms, my fiancé rolls his eyes when I tell him about my pain. My family was always too self absorbed to pitch in, they and my friends hastily dropping away as they realised that I couldn’t do things for them anymore, fit into their schedules as readily, or maintain a permanent positive outlook in the face of everything. Eyeing me sideways as I shift in pain or decline an activity far beyond my reach, some even outright claiming me to be a fraud behind my back.
It’s not all intangible though, and this is the kicker - for all the invisible aches and pains, the lack of energy that is so hard to convey, the huge gulf that lies where my support network should be, there are actual physical signs, red flags that I feel have been completely ignored; night sweats, recurring fevers, lymph nodes increasing in size, density and number all over my body, an unknown, slow-growing lesion in my spinal cord and now a bone in my shoulder growing abnormally, first raised to my GP in late February. Still no diagnosis.
All other symptoms aside (but should surely now be fully included?), with this enlarged bone, should I not have been put on a cancer pathway by now?
There have been so many delays - GP told me to wait for the initial X-ray appt (which never came) then was told when I checked 2wks later I should’ve rang the hospital to book it. After finally getting the X-ray and chasing the report a week or two later, it turns out the doc only asked them to look for a “floating rib” rather than the bone enlargement, so it came back clear. Another week of them looking at it again confirmed “deformity” and further imaging was requested. After another 2 weeks of nothing I contact them to find that it had been rejected as not marked urgent. Doc marks it urgent, I phone to book only to find they’ve marked me down for the wrong shoulder and they need to confirm the right one before imaging. A total of five weeks plus delay on top of several years shouldn’t mean much at this point, but now I’m actually really very scared. This new thing hurts in a different way to everything else (it really kicks in heavily at night and I have to use oramorph on top of usual pain meds to try to beat it back!) and this weird bone seems to be getting more and more prominent. My arm keeps going tingly and weak and rubbery lumps are appearing around my collar bone and neck. They aren’t listening, refuse to acknowledge the lumps and keep messing up - I really don’t know how to get them to take this seriously.
I’m just so worried that it’s going to be too far gone by the time they catch it 😕
Feeling like Im crazy--My Pain IS real!
Having a really hard time with doctors giving me ridiculous advice or not believing my pain at all. Telling me that I just need to stretch more and build up strength gradually so I dont get hurt. I feel like no matter how hard I try they don't take my pain seriously.
I wish they would listen or at least refer me to a different doctor who would take my pain and other symptoms as legitimate. I am sure there is more that could be done to help me if doctors would just diagnose my issues so they could be treated. They won't even consider anything else beyond the generic term of "chronic pain" which is pretty useless in terms of treatment and diagnosis.
I have tons of symptoms, they must mean something: pain all over my body both muscles and joints, shooting zaps or aching pains down my legs or arms, headaches and migraines, dizziness, nausea, brain fog/confusion, hypersensitivity to lights/sound/touch/temperature, dry/burning eyes, balance problems, weakness and tingling in hands, heavy sensation in arms, fatigue, jaw pain/stiffness/clicking, breathing problems, bruise like pain when scratching or touching my skin, burning and itching sensations and many other varieties of these symptoms.
There must be something they can do/diagnose? I am in so much pain I cant function and their only reponse is to try more pills (which i dont want unless I have a diagnosis so that I know the treatment is appropriate) or to stretch and exercise. Its like going in circles and they wont give me any other help or answers.
Someone help me!
No diagnosis frustration-help please!!!