hello everyone..I'm new here

By lynny1

2 min read

Hello everyone. I hope you're all having a great day wherever you may be. I have just joined, I have suffered fibromyalgia for years now, I thought a few years back I could have lupus I asked for a win biopsy to be done and it came back negative. That was two years ago, I was also told I have costochondritis.

Experiencing excruciating pain

A year and a half ago I started suffering from knee pain. I was seen by doctor and sent for physiotherapy. I woke up after starting to do some exercises on a home exercise machine one morning with excruciating pain in my hip and back area. As we are going through COVID now doctors are doing phone appointments.

So after suffering all week where I could barely get out of bed etc..I thought I had done some damage to my back or hip..so I called to speak to the doctor and he sent me for an x-ray..it came back with wear and tear I was told..so I just carried on best I could with pain killers. This was around two months ago.

Progression happened quickly

It has progressed so much that I have had to use a walking stick and a grabber and other kitchen utensils to assist me. I have constant pain in every single joint. If I walk to shop and carry a few items when I get home and sit for five minutes I go to move and I'm in excruciating pain.

Seeking answers and understanding

I'm stiff in morning and I have had tendonitis in and next to very painful elbow for weeks now..I get chest pain and fatigue...I called doctor again last week ..he tried to put it down to my fibro but I know it's not that..he did a full blood count. NEGATIVE...I was sure something was show what was going on..after I rambled on to him on phone that I am in pain and somethings not right, he said I can't send you to a rheumatologist as they are refusing to see anyone just now unless your blood results were through the roof..and I can't give you any definite answers..so I said what should I do I want to know what's going on? He said it it makes you feel better if you want I can give you a diagnosis of seronegative rheumatoid arthritis...take the pain mess your on and it you get any worse let me know....so I joined here looking for help and answers.

I feel quite confused, frustrated, and anxious

To add to it..my family have never been very supportive in all the years I've had fibro..they just don't get it..I try not to talk of it or complain I just get on with it ...how I don't even want to tell them about what I'm going through as they will think I'm just attention seeking...any advice or support you give will be much appreciated.

thank you ...take care and stay safe...lynn

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lynny1 Member
Sorry for misspellings.. Hope you can read what I was trying to get across.. Thank you lynn
1. Kelly Dabel Community Admin
 Thanks so much for sharing your story and reaching out Lynny1. I hope others here chime in with their personal experiences to share with you. So frustrating to not be able to get a definite diagnosis and to not be able to get the appointments to see doctor sand specialists right now. I'd encourage to absolutely speak with your doctor about any new, changing or concerning symptoms and especially if anything gets worse as he/she stated. In addition to speaking with your doctor, these articles may be helpful to you: <a href='https://rheumatoidarthritis.net/spotlight/seronegative-diagnosis/' target='_blank'>https://rheumatoidarthritis.net/spotlight/seronegative-diagnosis/</a> and <a href='https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/' target='_blank'>https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/</a> Glad you've found our community and I hope that we can be a source of helpful info and support as you navigate this. Please reach out anytime. Best, Kelly, <a href='http://Rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
2. lynny1 Member
 Hello Kelly thank you for the links and your message to me.. Im just glad to be here and get the help and advice I can.. Much appreciated thank you.. Lynn
Richard Faust Community Admin
Hi Lynny1. On top of the excellent information on seronegative RA shared by Kelly, I want to ask if your doctor has discussed treating you as if you now have an RA diagnosis, beyond the pain medications. There are currently quite a few treatments available for RA, which could potentially make a difference in quality of life and long-term well being. This article from our editorial team gives an overview of RA medications: <a href='https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra/' target='_blank'>https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra/</a>. Hoping you can get some answers and treatment. Best, Richard (RheumatoidArthritis.net Team)
1. lynny1 Member
 Hello Richard thank you for your message.. He just said to me if you want I can give you a seronegative rheumatoid arthritis diagnosis.. He never offered me anything else for now anyway.. As apparently the rheumatologist is only agreeing to see anyone who's blood results are through the roof.. Due to covid.. So I can't be seen at the hospital.. He just told me to continue taking my naproxen which I take for fibromyalgia.. And if I get worse to call them back.. But I'm already pretty bad with pain.. I have started taking turmeric which I'm told is a good anti inflammatory.. So fingers crossed that works as I don't know what else I can do for now thank you Lynn
2. Richard Faust Community Admin
 Hi Lynny1. Considering that you can't get into see the rheumatologist and, thus, on hold regarding RA treatments, I thought you might be interested in this article on complimentary and alternative therapies: <a href='https://rheumatoidarthritis.net/alternatives-therapies/' target='_blank'>https://rheumatoidarthritis.net/alternatives-therapies/</a>. Best, Richard (RheumatoidArthritis.net Team)
momo1234 Member
I would look for a second opinion. I’m not sure what state you are in but I had my first flare in May. It took me 2 months to get into the rheumatologist but they seen me with all negative blood test. The only thing that comes up on my blood test is my inflammation level is high. The rheumatologist diagnosed me with seronegative arthritis and started me on treatment.
1. lynny1 Member
 Hi momo1234 thank you for replying.. Im in a situation where I'm as I've seen the doctor and my blood results are negative theres nothing else they can do in meantime as this covid situation is stopping me seeing a rheumatologist.. He's done what any doctor would do by organising a full blood count.. And as its negative he can only offer me the seronegative diagnosis.. In the meantime.. So unless my blood results change the rheumatologist department will refuse to see me.. I don't really want to change doctors.. Basically I have to sit tight for now.. What I would like to ask you and everyone here as I'm here looking for any advice etc... With my symptoms do you reckon it sounds like I have ra?.. Many thanx lynn
lynny1 Member
Thank you Richard... Ive started taking turmeric capsules I've been told they take wks to work.. So I'm hoping that helps.. I will look at the other treatments available but it may be difficult to be able to get them at the moment with the current situation.. Thank you