Extreme PAIN

By CommunityMember2957

1 min read

Hopefully one day SOON I will find out why my body hurts me so badly!

Pain all over

I have had three RA tests and no inflammatory markers have been found! It seems my pain is in my muscles, joints, and head/scalp.

I’ve had several CT scans and a bone scan within the past year. Having fallen a few times, my muscles, tendons, ligaments and I believe nerves were damaged throughout my body from pulling myself up.

Many painful symptoms - but why?

I have piriformis syndrome and sciatica in my buttock and down both legs. My L3-4 is herniated. I now walk on a walker and a cane!

Both knees are almost impossible to stand or walk on. I am currently seeing various specialists for diagnosis: rheumatologist, orthopedist, urologist, and infectious diseases.

Comorbidities complicates diagnosis

I am 79 and was diagnosed years ago with osteoarthritis. Five years ago I was diagnosed with Sarcoidosis as well as Parkinson's, (for which I take no meds).

I believe something is not being addressed.

The thing that helps a lot, besides 1 Hydrocodone 4xda and 1 Methacarbonol 4xda., is ice! Any advice or suggestions will be appreciated!

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Larry M Member
I have rheumatoid arthritis, osteoarthritis, and psoriatic arthritis and the pain you describe is all too familiar. For me, most of the pain is caused by psoriatic arthritis. The worst is enthesitis (pain where tendons insert into bones). It never goes away; it just moves around from joint to joint for a new surprise every day or so. Have you been evaluated for PsA? One very common sign is pitted nails.
Lori Foster Community Admin
You have so much going on, <inline-mention username="CommunityMember2957" user-id="5515244"/> . I can image it is hard to determine which conditions are causing each of your different pains. Are you aware that we have a sister site for people with Parkinson's disease, <a href='https://Parkinsonsdisease.net?' target='_blank' rel='noopener noreferrer ugc'>Parkinsonsdisease.net?</a> You might find some help identifying some of your Parkinson's symptoms there and treating them. For instance, here is an article about Parkinson's and leg pain that might interest you: <a href='https://parkinsonsdisease.net/living/leg-pain' target='_blank' rel='noopener noreferrer ugc'>https://parkinsonsdisease.net/living/leg-pain</a>. Many people with MS, which is similar to Parkinson's, also experience pain on their scalps like you do. Do you have a neurologist you see regularly? If so, you might want to mention some of these symptoms to your neurologist. If not, it would be a good idea to get under a neurologist's care. I hope you get some answers and some relief soon. Thinking of you. - Lori (Team Member)
nitaliz68 Member
Have them check your Vitamin D levels. My markers <inline-mention username="CommunityMember2957" user-id="5515244"/> ? I went through the same thing with the RA marker levels were low but the pain was unbearable and once my lab work was complete it was discovered how dangerously my vitamin D levels were and now I’m on prescription strength vitamin D and I can feel some improvements…. Praying for relief for you
Sharon15 Member
My vitamin D and B levels were very low. After 8 months of working on correcting these issues they are back up to approved levels. But I have to say I cant see any improvements in my pain levels or fatigue.
JenSLP Member
Same here. I have the pain daily but levels never show up in lab work to date. I am a medical Speech Pathologist by trade and probably know too much/seen to much in my career but would ask as well if you’ve seen neurology. Parkinson’s can cause lots of issues as you probably know with balance and when you have the chronic pain it’s just exacerbated. Have you seen physical therapy? They have lots of different things to do to help now with pain beyond meds. I’ve gone several times and find it helpful. Good luck!
1. Richard Faust Community Admin
 Hi <inline-mention username="JenSLP" user-id="4195671"/>. Thank you so much for sharing (always great to see how community members try to help each other out). You mentioned nothing showing up in your lab work. Has your doctor ever mentioned seronegative RA? I want to share with you and <inline-mention username="CommunityMember2957" user-id="5515244"/> this article from our editorial team on seronegative RA: <a href='https://rheumatoidarthritis.net/seronegative-diagnosis' target='_blank'>https://rheumatoidarthritis.net/seronegative-diagnosis</a>. Also CommunityMember2957, I want to share this article on mixed connective tissue disease which is autoimmune and has symptoms which overlap with various other autoimmune conditions: <a href='https://rheumatoidarthritis.net/mixed-connective-tissue-disease' target='_blank'>https://rheumatoidarthritis.net/mixed-connective-tissue-disease</a>. Of course, only a doctor can provide the proper diagnostics , but thought the information may be helpful in discussions with them. Best, Richard (RheumatoidArthritis.net Team)
JenSLP Member
Yes I’ve been diagnosed as seronegative RA. I was diagnosed last year finally after 5 years. 
1. christine.laaksonen Community Admin
 <inline-mention username="JenSLP" user-id="4195671"/> oh I'm so glad that you were (finally) able to get a diagnosis. It can be such a long frustrating journey that I know many people here can relate to. How are you doing currently? Have you found a treatment that's helping you get relief? Wishing you a gentle day. -- Warmly, Christine (Team Member)
JenSLP Member
I’ve been put on Rinvoq. Working on my second week now. I’ve gone through the Dmards and Humira. So really hoping for a win with this!
1. christine.laaksonen Community Admin
 <inline-mention username="JenSLP" user-id="4195671"/> I'm crossing my fingers this is the one for you! -- Warmly, Christine (Team Member)
Kimberly0919 Member
Please also talk to your Dr about taking an immunosuppressant in combination with the Humira. I was given Humira by my last rheumatologist with no immunosuppressant and at first there wasn't any issue, however by month 3 I was right back to square one. I had developed antibodies to fight the Humira and it is/was no longer effective. Now I have a WONDERFUL new rheumatologist who also heads a research team, she is so on top of the disease and treatment. Now I am on Enbral and Arava and though I still struggle with some days better/worse than others, I am in a MUCH better place and couldn't be happier. Wishing you much luck in your journey to find relief.
1. christine.laaksonen Community Admin
 <inline-mention username="Kimberly0919" user-id="3190322"/> thank you so much for commenting. I am so so glad to hear that you have such a wonderful rheumatologist and have found a treatment that has you in a much better place. Sending you gentle hugs. -- Warmly, Christine (Team Member)
Daniel Malito Moderator & Contributor
<inline-mention username="CommunityMember2957" user-id="5515244"/> Co-morbidities, secondary and even tertiary illnesses are such a big part of living with RA that after a few years it's almost abnormal not to have comorbidities! Hopefully you have found some ways to help curtail the symptoms of yours. Keep on keepin' on, DPM
danny777 Member
Wow! That’s a lot… my first autoimmune was, apparently, eczema, then Sarcoidosis, and finally RA. I was on prednisone for a year for the sarcoidosis. When I took the first dose, by the next day, most of the joint tumors/nodules were gone and the skin splitting was halted. I did find American doctors were, then (1991), not very familiar w sarcoidosis. I was hospitalized for a heart problem in RSA and the doc was pretty casual about Sarcoidosis- somehow it falls in the same basket w other diseases experienced by miners. The biologics take a while to get things sorted but, in my experience, work great once they launch.