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My rheumatologist says fatigue is not part of this condition

joma

Hi all,
Wondering if these are red flags that I need to find a new dermatologist. He tells me my fatigue which at times is still very intense is just caused by poor sleep or stress, and has nothing to do with the condition. I voiced concerns that sometimes my fatigue is so bad that I pass out or can barely function and that this is preventing me from staying as active as I need to be to manage pain. I also expressed that I’m sometimes having very intense pain flares at random times and he suggests is just the way I’m positioned or maybe that I slept funny. I’m 36 so I’m no spring chicken but I don’t think it’s normal to experience debilitating pain to the point of being in tears for several hours due to sleeping funny, and then for it to just subside on its own. He basically said all he can do for me is send me for another MRI this summer. Am I being hypersensitive or are these red flags that my doctor maybe doesn’t understand my condition very well?

Lawrence Rick Phillips Moderator & Contributor
as if you need it, here is another NIH article. https://pubmed.ncbi.nlm.nih.gov/8832988/
Lisa Marie Basile Moderator & Contributor
I hope you’ll go to your doctor and show him the following article:

https://pubmed.ncbi.nlm.nih.gov/22901458/

https://pubmed.ncbi.nlm.nih.gov/26523020/

It’s an extreme shame that he is out of date and misinformed. Have you had any follow up yet?
1. LeeLouise Member
  : I have AS along with some of the other lovely things that go with is IBD and worse. Numbness of legs and feet. Pain in every joint and many- many falls some managing to break some major bones. I have UVI I am a retired nurse. There is no way Any One Could Convince Me That Severe Fatigue Is Not Part of This Disease. It's Devastating and It is another one of those Diseases that is pretty much Invisible So Much So That With A Smile On My Face I Really Think Many People Including My 4 Brothers Don't Believe There is Something 'Seriously Wrong'. My older brother just told me, for however many times I need therapy and to stop using this as an excuse. Does he actually think I want t be home all the time, not working as a Nurse that I 'Loved My Career' - This invisible disease destroyed my marriage and many friendships. " How come you were O.K. to do _______ on this day but now you cannot do_______ " . I feel like I need to be a card carrying Member of The Invisible, Incapacitating Disease Club. Oh and let us not discuss Pain killers or medications - half the family is in the Pharmaceutical business or medical profession - I am a drug addict as far as they are concerned. It's psychologically exhausting and heart breaking. My Ex-Husband and I divorced after 24 years, that was 20 years ago. I have not seen my daughter since she was 16. She is 31 and I heard she is engaged. I have no relationship with her at all because of all the misconceptions about me. It's just heartbreaking....
2. JessicaLipkin Community Admin
  I’m so sorry to hear you’re going through this with your family. Unfortunately, it’s not uncommon for family members to not understand what people with axSpA are going through, but no one should be outcast because of their chronic illness. You’re welcome to come by here anytime you’d like support or information - there are so many people here who really get what you’re going through! Sending positive vibes your way! -Jessica, Team Member
Nadine Cruz Member
Hi joma Hope all is well!
This topic stood out to me because i experience very severe fatigue also and have been since my diagnosis and it has progressed over the past 4 years so i believe fatigue does come from the disease im 38 im no spring chicken either but its def not normal to have such severe fatigue without something causing it. I hope your fatigue has subsided some since this post? I take B12 and i also have a bath soak for fatigue and pain i soak everyday and i have found that to help with some of my fatigue. I don't believe flare ups comes from sleeping the wrong way don't we wish it did because it would be easier to fix if that was the case right? Are you seeing a new doctor? Best wishes
Nadine (Team Member)
Dawn Member
I LOVE this article. You reference a struggle most of us experience with Drs and how our symptoms are minimized. WHY?
I vote to fire him and empower yourself to be your greatest advocate. Find a real Doctor.
I had to fire my GP for wanting to DX me w/ Fibromyalgia. Although, I may have that disease, I knew in my soul it might be a misdiagnosis others too have to suffer with. I fired said GP for knowing for 3 long miserable years in which I quit my PT job because of pain, I quit school, because of pain, I almost quit life(!), because of pain.
I stuck it out for a new GP who immediately sent me to a rheumatologist based on my insistence of research I did in regards to mast cells and disease indicators.
She, (my beautiful, intelligent, perceptive rheumatologist) knew what it was before I even left her office for the lab. I was Hla-B27 (+).
She put me on Lyrica, Humara, Meloxicam and told my GP I can finally be given pain meds.
8 months of being bed bound, and YRS of criticism by everyone(!), I cried from the unbelievable moment she validated my disease.
On good days, is like walking up steep hill. I can get out bed most days, it still is 7-10 pain days. I come here for support and TRUE understanding of this disease. I want to thank all who are on this site as I know, it helps, if not saves people.