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Posted 3/9/2021 8:06 PM (GMT 0)
Hi, first post ever, I have had an elevated CRP level for at least 10 years, lowest ever has been 11. Had Rocky Mtn Spotted Tick Fever in 2014, Epstein Barr values were way high over 600 in 2016, tested positive for Mycoplasmia pneumonia in 2018. Joint pain almost all the time, fatigue most always, my PCP says I have Fibro. I have weird rashs that pop up on my neck and face. I am at my wits end. Any suggestions.
Posted 3/10/2021 10:24 PM (GMT 0)
I would suggest seeming a doctor who specializes in tick borne illnesses to order some more tests. PCP provider does not know what to do with you so you got the trash can diagnosis of Fibro. You can probably get more help in the Lyme forum.

Not everything is caused by Lyme disease. Check out my message to you a couple of posts down in this thread. I do tell members about Lyme disease as a POSSIBLE reason for how they feel but it’s definitely not the only reason!!!

Sherrine

Post Edited By Moderator (Sherrine) : 3/10/2021 4:08:06 PM (GMT-7)

Posted 3/10/2021 10:56 PM (GMT 0)
Hi, Kbethy, and welcome! The elevated CRP shows inflammation in the body...at least that’s what my rheumy told me. They said mine was off the charts but I have several autoimmune illnesses.

Much of what you are describing doesn’t sound like fibro. Have you been checked for lupus? You can get rashes on the face and other body parts and there is the joint pain and fatigue. Fibro patients do have that. Here is a link from the Mayo Clinic all about lupus. You can read it and see it it sounds like what you are going through. We rarely hear about rashes on the face with fibro.

https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789%

Lyme disease could be another possibility. It’s caused by the bite of a deer tick. Since you are where ticks could be, this is another possibility to check out. There are tests for both lupus and Lyme disease so that helps rule them out. There is no test for fibro so this is another reason to rule out everything else that have some of the same symptoms as fibro. When fibro patients get blood work we look like the picture of health!

Fibro affects the muscles, tendons, and ligaments and we do have chronic pain and lots of weird things happening. They are thinking it is a neurological illness because it seems our nerves are affected somewhat. If you read Fibro 101...the first thread on the forum...you will get a much better idea of what fibro patients go through. You just might see yourself there. When people come on and try to describe how they are feeling, a lot is left out. So this thread is very helpful and also gives you good ideas as to how to help yourself.

I’m looking forward to getting to know you better. Don’t hesitate to ask questions. We will do our best to answer them. Let us know if you are or have been checked for Lupus and Lyme disease because we do care about you. Hope to hear more from you soon.

Sherrine
Posted 3/10/2021 11:01 PM (GMT 0)
Skinny Joe, fibromyalgia is not a trash diagnosis! It is a true illness that is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, the World Health Organization and famous hospitals like the Mayo Clinic, the Cleveland Clinic, and John’s Hopkins just to name a few. I see you post mainly in the Lyme forum and I don’t think you would want anyone calling Lyme disease a trash diagnosis!

Not everything is caused by Lyme disease. If this is how you feel, please stay in the Lyme forum because you are not helping here with people who are suffering from fibromyalgia.

Sherrine
Posted 3/11/2021 2:27 AM (GMT 0)
Since when is it accepted practice to modify someone else's post with subtext.

Moderators have this ability to explain why they have deleted things in a post and we can comment on things that aren’t accurate or helpful. In your case I left your entire post up so our members could see what you said. It was very hurtful to people suffering with fibromyalgia and I will not allow such posts to go without standing up and representing my members.

What is not acceptable is for members of another forum to come here and say our diagnosis is trash and refer members to their forum. I won’t allow this and will be deleting posts with no explanation.

Sherrine

Post Edited By Moderator (Sherrine) : 3/11/2021 4:45:18 AM (GMT-7)

Posted 3/11/2021 2:36 AM (GMT 0)
Is there a fact checker feature of healingwell now?

No

Sherrine

Post Edited By Moderator (Sherrine) : 3/11/2021 5:16:58 AM (GMT-7)

Posted 3/11/2021 4:40 PM (GMT 0)
Thank you all for your honest answers. I went back to my doctor yesterday and she is referring me to a rheumatologist. She is also checking a high sensitive CRP to see if the inflammation in in my heart. She started me on a lose dose statin. My rash on my neck is no better and still no answers. We ran some other tests, metabolic panel and lipid panel and a cat dander panel to see if maybe the rash is coming from my cats.

I have always felt like this is stemming from my tick bite, however, don't want to rule out anything the rash is really throwing me off.
Posted 3/11/2021 4:59 PM (GMT 0)
If you were treated with antibiotics for the Rocky Mountain Spotted Fever, that should have been cleared up. Is the rash that’s on your face and neck on the same side of the body? If so, maybe it’s your pillow case, pillow or laundry detergent. My kids got rashes on their legs when I changed laundry detergent to a cheaper brand.

Did you know that Purina ProPlan has come out with a cat food that reduces cat dander by I think 45%! You can find that at PetSmart and most likely Chewy.com.

The joint pain could be from muscles, tendons, and ligaments that are inflamed. It feels like it’s the joint but it’s the muscles moving the joint that’s causing the pain. With joint pain you usually feel warm at that joint and it’s sometimes red.

It sounds like you have a thorough doctor but, if you aren’t sure lupus or Lyme disease has already been ruled out, call the office and ask them. They can look at your blood work and tell you. If you did get them ruled out, at least you can scratch them off your list!

Feel better!

Sherrine
Posted 3/11/2021 8:00 PM (GMT 0)
Thank you, and thank you for letting me know about the cat food, will def be looking into getting that. Always tested negative for Lyme my RA factor came back negative, however have a huge family history of psoriatic arthritis so looking into that. I took the Doxy for the RMSTF however was late getting started. I have a great doctor she always listens and wants to find out what this is as bad as I do. It may end up being fibro and that is bad enough by itself. It is very real and I have friends that suffer tremendously with it.
Posted 3/12/2021 4:34 PM (GMT 0)
Kbethy, I’m smiling. 🙂. In my first post to you I mentioned that when someone comes on and tries to describe how they feel. Things are left out. Your family history of psoriatic arthritis is a big clue to what is possibly going on with you!

Psoriatic arthritis is a spondyloarthropy illness.

“ Spondyloarthropathy (sometimes referred to as spondyloarthritis) refers to a group of inflammatory rheumatic diseases that includes ankylosing spondylitis and psoriatic arthritis. The predominant symptom among them is joint pain and inflammation, sometimes affecting the spine.”.

The reason I am bringing this up is I also have ankylosing spondylitis along with fibromyalgia! The psoriatic arthritis in your family certainly could explain the rashes you get. They look somewhat like psoriasis. Have you seen the rashes on family members? This illness also can be why you are having a lot of joint pain. Fatigue? That’s one of the hallmarks of fibromyalgia! And of course your blood work has already shown the inflammation.

I was having extremely severe back pain for years and took a ton of ibuprofen for it. Then I was diagnosed with fibro and automatically blamed fibro for all of the back pain. But then 8 years ago I developed bleeding ulcers from all the ibuprofen I was taking in order to function. They stopped the ibuprofen and Tylenol or even opioids wouldn’t touch my pain! I had pain running down both legs into my calves. I got to the point I could barely walk and I needed two canes to walk. I thought I was going to have to sell my home and move into assisted living. It was a painful, frightening time for me.

My doctor gave me a name of an excellent, board certified rheumatologist and I set up an appointment. I see your doctor has referred you to a rheumatologist also! That’s great! 😊. Anyway, I had many x-rays taken and a lot of blood work too. A family history was taken and be sure to mention the psoriatic arthritis in your history. I have Crohn’s disease and that played a part in my diagnosis so don’t leave anything out.

My blood work showed that my CRP and ESR were extremely high. These show inflammation. I also had the genetic marker for spondyloarthropy. It’s called the HLA-B27 and I was positive for that. With all this info, I was given the diagnosis of ankylosing spondylitis plus I had two MRI’s of my hips because of pain and that showed I also had sciatica. I was a big mess! 😂

The rheumatologist said I most likely had AS for years but I kept it at bay with the ibuprofen...which is the first line of defense for this illness. He wanted me to have Remacade infusions but I wasn’t comfortable with that. I spoke with my Internist and he said he didn’t blame me for not wanting the infusions and that this was a quality of life issue and I went back on the ibuprofen. He said there was a medication called misoprostol that has shown to help protect the stomach from ulcers in some people so he prescribed that for me. It’s been 9 years so far and I haven’t had any problems with ulcers!

Right after my diagnosis I started searching ankylosing spondylitis since I knew nothing about it. I was still having a lot of pain. On one site it mentioned a muscle relaxer called Robaxin (methocarbamol) that helped some people with AS so I asked my doctor if I could try it. And, boy, did that make a difference for me! Between the ibuprofen and methocarbamol I was getting my life back. I didn’t take a lot...just one 500 mg of methocarbamol four times a day plus my ibuprofen. I didn’t want to be drowsy because I needed to be able to drive. Then as the pain receded I backed down to three and now I take ibuprofen (three tablets at a time) and one methocarbamol only 2 times a day. I’m not drowsy and have no problems driving. I have no pain in my legs and my back is soooo much better. I now can sleep without pain waking me up!

I’m telling you my story just in case you do have psoriatic arthritis and perhaps these medications could help with you too! Please let me know when you see the rheumatologist. I really do care about you and want you to feel much better.

Sherrine
Posted 3/12/2021 5:20 PM (GMT 0)
Thank you so much, still waiting on my HLB-27 test, received the HS-CRP yesterday and it has scared me to death it is 13.25, should be under 3. Rash still all over my neck and so tired could not take my daily walk today. Do you have any underlying heart disease?
Posted 3/12/2021 6:18 PM (GMT 0)
No, my heart is fine. I do take CoQ10 twice a day plus 5,500 IU of vitamin D3. I have several supplements that I think help me. I watch fats too..,especially saturated fats.

Sherrine
Posted 3/17/2021 11:29 PM (GMT 0)

Sherrine said...

Right after my diagnosis I started searching ankylosing spondylitis since I knew nothing about it. I was still having a lot of pain. On one site it mentioned a muscle relaxer called Robaxin (methocarbamol) that helped some people with AS so I asked my doctor if I could try it. And, boy, did that make a difference for me! Between the ibuprofen and methocarbamol I was getting my life back. I didn’t take a lot...just one 500 mg of methocarbamol four times a day plus my ibuprofen. I didn’t want to be drowsy because I needed to be able to drive. Then as the pain receded I backed down to three and now I take ibuprofen (three tablets at a time) and one methocarbamol only 2 times a day. I’m not drowsy and have no problems driving. I have no pain in my legs and my back is soooo much better. I now can sleep without pain waking me up!

Sherrine

You might consider trying Celebrex its usually the first line of defense for AS before the biologics. Its safer on the GI and the original cardiac problems reported with it have been discounted in studies and its been found to be safer then COX-1 and COX-2 inhibitors on the heart. In the end you have to use what works but something to consider.

Post Edited (skinny_joe) : 3/17/2021 5:36:22 PM (GMT-6)

Posted 3/18/2021 12:59 PM (GMT 0)
Well looks like I may have some heart issues, they are referring me for a heart ct. Calcium scoring test. Since the HS CRP was so high but all the other tests HLB-27, RA factor and CCP or something like that all came back normal. Still waiting on the referral to Rheumatology. I just want a diagnosis, or at least some idea of what is going on.
Posted 3/18/2021 6:28 PM (GMT 0)
The rheumatologist should be able to help. They handle a lot of different illnesses. I hope you get your referral soon. Maybe your doctor was waiting on the last results of your testing. If you don’t hear soon, I’d call them and ask for the referral again. They may have forgotten about the referral.

By the way, this is from an arthritis site...

“ Nonsteroidal anti-inflammatory drugs (NSAIDs)
NSAIDs are often the first line of defense against ankylosing spondylitis pain. NSAIDs is a broad category of medications that includes: Over the counter NSAIDs, such as aspirin, ibuprofen, and naproxen.”

Sherrine
Posted 3/18/2021 7:13 PM (GMT 0)

Sherrine said...


By the way, this is from an arthritis site...

“ Nonsteroidal anti-inflammatory drugs (NSAIDs)
NSAIDs are often the first line of defense against ankylosing spondylitis pain. NSAIDs is a broad category of medications that includes: Over the counter NSAIDs, such as aspirin, ibuprofen, and naproxen.”

Sherrine


This is from the spondylitis.org which a rheumatologist should belong to if they are treating you for AS.

A different class of NSAIDs known as COX-2 inhibitors (or COXIBs) seem to reduce the risk of gastrointestinal complications associated with traditional NSAID therapy. Celebrex (Celecoxib) is still being used to treat spondyloarthritis.

Unfortunately insurance companies will not pay for Celebrex unless you have failed with OTC drugs i.e you had bleeding. I use it on occasions as Im allergic to COX-1 inhibitors. They required me to see a allergist before insurance would pick it up. Of course in our messed up insurance world it was cheaper for me to use goodrx then my insurance which spent weeks approving it. With goodrx its about $15 for 90 pills.

Post Edited (skinny_joe) : 3/18/2021 1:29:34 PM (GMT-6)

Posted 3/18/2021 9:30 PM (GMT 0)
The American College of Rheumatology doesn’t mention Celebrex by name like they do ibuprofen under treatments for spondyloarthritis but they are both NSAIDs. They both can cause ulcers but ibuprofen causes that more than Celebrex so you are correct on that.

https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Spondyloarthritis

My doctor has me taking a medication called Misoprostol that helps prevent stomach ulcers and I’ve been taking it nearly 9 years and have had no problems. So maybe file that away in case you start having stomach issues.

Sherrine
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