I was told I need to have a hip replacement done. Have you had one? Did it make your Fibromyalgia more severe afterwards? Please share anything you can about having this surgery while living with Fibro. What method of surgery did you choose, and what helped you with your pain after your surgery? Big decision. Thanks so much!
I haven’t had hip surgery, but have had quite a few orthopedic surgeries. Your brain can really only focus on the “loudest” pain at once. So immediately following, you will likely find that your fibromyalgia will seem to be under control.
I would expect that you would have a significant lessening of your fibromyalgia symptoms for a stretch after surgery, and hope that you have a significant lessening.
Sharon from ModSupport
That was a great reply regarding surgeries. You are quite right that your brain focuses on the “loudest” pain - I notice that just about every day of my life. After one of my surgeries (rods in my neck, with fused discs), I noticed I was extremely weak. Thank goodness my husband was able to care for me during that time. Later I discovered that the inflammation in my body was extremely high, which explains the weakness. I was told that it is common to experience this after surgery, although, I had never had it to that extent before.
Sharon, thank you for your comments. I know that “trauma” causes my fibro pain to increase. It is helpful to know how surgery affected yours.
There is also another possibility - Your fibromyalgia could be making your hip pain worse. That is something fibro does - It remembers pain, and magnifies it. If this is the case, hopefully, you will feel better between flares. I wish you all the best in your decision. Deciding whether or not to have surgery is difficult, but, in the end, if it is likely to improve my overall health, and lesson my pain, I will do it.
It will be a while until I can have the hip surgery, but I really appreciate your input. I have other issues that will demand my attention for a month or so. I hope your Fibro is currently manageable. Take care of yourself!
Sunshine, how are you now? Any word on the hip surgery?
I’m Seenie, one of the ModSupport team members (I work with Sharon, who posted above). Can I be really really super nosey? (Yes?) Do you or anyone in your immediate family have skin issues of any kind?
Why am I asking? I’ll tell you later. I will tell you that I have a hip replacement, and having that thing out and replaced with titanium was such. a. relief. The recovery from the surgery takes a while, but it isn’t awful. There’s pain, naturally, but it sounds like you deal pretty well with that. I’ve also had two knee replacements, and I found them much more difficult.
Hope you’re doing OK and staying healthy!
Thank you for asking, and for sharing your experience. I have been dealing with some ENT issues, so I haven’t chosen or seen a hip surgeon yet.
Yes, I have several skin issues. I have seborrheic keratosis almost everywhere. I tend to develop lipomas, and have had several removed. My skin is extremely dry and sensitive. When I was young, I had warts, but that virus disappeared after dealing with it for several years…
Let me know if you need more info - for whatever you’re doing!
Hmmmm, Sunshine. I didn’t want to “lead” you with ideas, but whenever someone here talks about fibro and serious joint problems in the same sentence, I start wondering about skin. Why? Because I had terrible all-over body pain for years that used to make me cry when I went to bed, and I had joints that (for some unknown reason) were crumbling. After a couple of decades of “probably fibro, use bath oil, lose weight, get good shoes, quit working so hard, toenail fungus blah blah blah” I was diagnosed with Psoriatic Arthritis.
I had very dry and terribly sensitive skin, for which I was to use bath oil, and disgusting toenails that I was told had “fungus”. All that was subsequently diagnosed as psoriasis. I’ve only ever had one small, quarter-size patch of the scaly stuff, and I thought that was just bad grooming. By the time I was diagnosed with PsA, I had lost my knees and hips, and suffered widespread irreparable damage to the joints in my feet.
Have you seen a Rheumatologist about your Fibro? Has a dermatologist ruled out Psoriasis? If so, that’s great, but if not, you might want to have them consider PsA as a possibility.
PsA is awful, and I hope you don’t have it, but not having a diagnosis (or having the wrong diagnosis) is far worse.
Think about it.
PS do you have any relatives with Psoriasis?
Sorry to be so long responding. I appreciate the information about your Psoriatic Arthritis diagnosis. I have not seen a rheumatologist, only my internist. What does a rheumatologist do besides prescribe medication? To my knowledge, there is no drug specifically created for fibromyalgia, and I don’t want to take any off-label medications for it. I’ve just developed a very high pain tolerance, and take lots of Advil.
Almost 30 years ago I had symptoms indicating fibromyalgia, and my doctor confirmed that diagnosis.
I developed a sensitivity to touch, but not in a good way. This will make me sound insane, but I often have pain out of nowhere, that feels like I’m getting a “shock” from underneath my skin. I usually have this in my legs/ankles, but I have had it in my breast. I pursued the breast pain with my GYN, then a breast specialist who assured me everything was fine. I have nail fungus, which Vitamin B12 has helped some.
I have serious seborrheic keratosis, which causes terrible itching. The dermatologists I have seen were no help with this. A large part of my scalp is covered with it, which is no doubt partly responsible for my hair loss over the last few years. I am looking for a knowledgeable dermatologist. This will be my third try, hopefully I will find a good one this time. How did your dermatologist diagnose you, and how did they treat your psoriatic arthritis?
Thank you so much for the information. I’ve enjoyed chatting about this.
@sunshine51 Sadly your story is all too common. It sadly takes on average 7 years for most Rare Disease Patients to receive an accurate and correct diagnoses. of 70,000+ members in our various communities, I don’t believe any single dianoses has been applied to them than FMS. I’m not saying the diagnoses you received 30 years ago was incorrect. I can assure you however mch has changed in that time. Including the fact that it is no longer a “junk diagnoses” and there is a huge body of growing research around the disorder. Rheumatologists are internists who specialize in treating arthritis and diseases of the joints, muscles, and soft tissues. Rheumatologists, arguably more than any other physician, closely follow fibromyalgia developments and will likely have the best knowledge base on the condition. There are in fact at least 4 medications specifically for FMS and many more in Stage 3. There are also many other developments/treatments in other areas than medication. BTW if ypu get relief from advil, then that is an important piece of info for any providor. Advil is ONLY effective against inflammatory process. FMS is generally not an inflammatory process. I only say this by way of saying we get your frustration, but please hang in there, you have a lot of folk with your back. Oh an if you think ModSupport has a multiple personality disorder. , you would not be incorrect. There are 4 of us using that handle. Everyone but me is pretty good at signing their posts me being TJ. so if its dull, overly blunt (i don’t mean it that way) and not signed, it me.
Hmm, sorry to disillusion a little, but in my experience and from what I’ve read, getting rid of one focus of pain, meant another one coming up. But that then needs targeting, or beforehand, by looking for the other apparently minor pain issues in time… Not talking hip replacement here, tho!
Pain is such a devilish symptom, and you are right: tamp one down, others start monopolizing your attention. Add to that, each person experiences and processes pain in their own way. Me, I have a high tolerance, so when I say it hurts, it actually means “something is really really wrong, don’t ignore this”. That’s how the joints in my feet got destroyed. Doc thought I was complaining about sore feet, like everyone else that works on the hoof (nurses, teachers, etc.)
So Sunshine, you’ve met my colleague TJ! He’s the one with the vast, encyclopedic knowledge of almost everything. I’m the diplomat. We sort the rest out between us.
Psoriasis can be hard to diagnose. I’d had a bit of this and a bit of that for years. Nobody mentioned the P-word. One doctor pronounced the painful peelingl irritation “where the sun doesn’t shine” to be “poor hygiene”. (The only time I have ever been embarrassed with a doc.) Nobody thought of Psoriasis until I"d had two knee replacements and suddenly there was joint damage in 9 mid-foot joints on both feet That’s when someone thought to look at my nails and saw this:
(little pits in rows-- aha moment)
Then I was sent to a derm. I had only one tiny scaly classic patch of psoriasis, and several other symptoms that nobody had ever recognized as being anything worthy of attention. The diagnosis of “arthritis” became “Psoriatic Arthritis” and suddenly there was a treatment protocol which gave me my life back, and has halted all progression of my disease.
Like TJ says, the average rare disease diagnosis takes seven years. And for the patient it is seven years of torment. Seven years average. Some get a diagnosis in a matter of months. Others live in the twilight zone for decades.
The “other” one, Seenie.
High tolerance: Yeah, it was my wife who got me to the docs just in time for the beginning of the long full flare.
LOL TJ - You are never dull!
OMG Seenie!!! I can’t believe a doctor actually said that to you - about bad hygiene - instead of HELPING YOU!!! Every time I get another piece of the puzzle of how you suffered before being diagnosed, it makes me sad
But, it is truly our blessing that you now fight to help others recognize symptoms that can lead them to a better, or full, diagnoses.
How did you go about finding your dermatologist?
Yep. I live in a small town. My GP was stumped, and sent me to a general surgeon who had a local reputation for being a medical encyclopedia. Obviously not in dermatology! LOL Of course, I naively accepted his word as Truth, and never brought the subject up again with a doc. (Ha! no way!)
Thank you for your kind words. I really appreciate it. And yes, once I was diagnosed (with catastrophic damage both physical and mental) I happened upon Ben’s Friends. The good peeps there (one moderator in particular … you know who you are … talked sense into me and taught me to advocate for myself. And here I am.
I’m a bit of a one trick pony though: I’m a local guide for PsA, but that’s where my medical knowledge ends. TJ, on the other hand, is our go-to when we need true expertise. OK, maybe I have another trick as well: I’m pretty good at helping others devise strategy which might lead to a proper diagnosis.
I am, though, determined that nobody should go through what I went through, if I have anything to do with it.
Big hugs to you and everyone here.
Weeeeellll, I’m in Canada and the specialist landscape here is a bit different. Only our PCPs can refer to a specialist, and normally they will refer to specialists they’ve used before or they’ve heard good things about. But in fact, we have a right to ask to be referred to a specialist of our choice (a lot of people don’t know that).
I’d had various skin complaints, and toenail “fungus”, but my PCP didn’t have much time for that stuff. At one point she said “I can send you to a derm if you want.” I remember what I told her: “I’m not going to a dermatologist because I have ugly toenails when waiting rooms are full of sick people.” Had I only known that the skin problems that she (and I) saw as being nuisance complaints, were a major clue to what really ailed me! (Which she also saw as a nuisance, come to think of it.)
I really really disliked the derm who diagnosed me. (One of her questions was “Have you ever had raw, itching skin around your butt-hole?” I mean, really …) I did some thorough research, decided who I wanted, and waited quite a long time to see him. By the time I did, my skin complaints had disappeared, thanks to the PsA treatment. I still see him once a year for a skin check.
I wonder whether whether TJ has any advice for getting a good derm when you live in the US.