I have severe pain in most of my body, around the clock!!
My legs are killing me with severe pain! My calves hurt so bad and it truly feels like my veins are being stretched as tight as can be. I just had an ultrasound to check for blood clots. Thankfully no clots were found in my legs but I’m still having the horrible pain and worry!!
It’s exhausting! I also having feelings of “bubbles” in my legs, like liquid moving, running water kind of feeling.
I’ve been on Cimzia for four weeks.
My rheumatologist said it will take 12 weeks with me, before we know if it’s going to work.
He also said my leg pain/pain in calves has nothing to do with PSA. Not so sure about that myself.
I have tons of inflammation. My SED rate was 66 and CRP was 39!!! Both of those have shown slight improvement since being on Cimzia. Both are still very high but down just a little.
Stressed, scared, exhausted in Kentucky!!
Much love and well wishes to each of you!
It’s good to hear that the doctor is being thorough and checking for the worst case scenario, such as blood clots. I have to admit,it doesn’t sound an awful lot like PsA pain to me, but here are a couple of thoughts. Inflammation can press on nerves, causing neurological complaints. The “water running” comment made me wonder if it could be from the knees, or Baker’s cysts? This is also inflammation related, and more common w/ inflammatory arthritis.
I’m also wondering if other things have been tested, such as for muscle inflammation and/or breakdown. Just throwing out ideas. Maybe it can help you find a new direction.
I second Stoney’s motion! Amy, I’m sorry to hear you are going through this. It’s truly awful – some of my worst pain was leg pain. Mine went from my waist to the arches of my feet, and the worst was when I was lying in bed. Something that helped me was a muscle relaxant. I was still undiagnosed at that point, and my doctor found that really strange (she thought every about me was strange and blew a lot of it off) but taking it at night really helped me. Once my disease was diagnosed and under good control, the leg pain disappeared too, but it took a while. Four weeks on Cimzia, it’s a bit early for results yet. Be a patient patient!
Hi Amy, have you got swelling or fluid retention that is causing the tight sensation?
I've been having leg problems for the last few weeks which started with oedema so alot of what you're saying is ringing bells.
Hi Amy,
I have leg pain too - but that's mostly projected pain from my now chronically inflamed left SI. It goes all the way down. Above my knee, it is on the side of my leg, and below my knee it moves to the front a little until it hits my ankle, and if it's a particularly bad day, the top of my foot even! It's a burning pain. Feels like my leg is being sliced open with a red hot knife. And my leg gets a little heavy.
Also, like a year or two before my diagnosis, I would have these weird leg pains that would keep me up all night. It was a different kind of pain - it felt like someone had put their hands in my legs and were squeezing my muscles. At the time I thought I was too tired or something - how I came to that conclusion I don't know :D Now I'm thinking it might have been fibromyalgia, which I also have and I guess you do too (I think I read that in your hello message), so it might be fibromyalgia as well.
Hi Amy,
I am sorry you are in so much pain. I can relate to the leg pain. My knees and ankles are by far my worst PsA symptom. I feel like I have more of a problem with my tendons then the actual joint itself. All my tendons feel like they are too short and hurt where they attach to the joint. The pain radiates along the tendon which can make me in severe pain all the way down my legs. I have recently started Remicade infusions because the Humira was not helping enough. I have my 3rd loading does infusion next week and am still waiting for relief. I hope it helps. It is very frustrating because we need to be able to walk! I try and walk a couple of miles several days a week, and it helps some, but I need to be feeling well enough and not so tight to be able to do it. Sometimes it takes 2 miles before my legs feel any "looser" when walking. Hang in there. Hugs!
Needs Answers,
Yes it is so frustrating not being able to walk normal.
Last night my husband went for a very short walk with me at turtle pace and when we got home, my legs we in so much pain.
My joints hurt, my tendons hurt and everything in between.
Trying to hang in there and see this through.
Hugs to you too!!
Needs answers said:
Hi Amy,
I am sorry you are in so much pain. I can relate to the leg pain. My knees and ankles are by far my worst PsA symptom. I feel like I have more of a problem with my tendons then the actual joint itself. All my tendons feel like they are too short and hurt where they attach to the joint. The pain radiates along the tendon which can make me in severe pain all the way down my legs. I have recently started Remicade infusions because the Humira was not helping enough. I have my 3rd loading does infusion next week and am still waiting for relief. I hope it helps. It is very frustrating because we need to be able to walk! I try and walk a couple of miles several days a week, and it helps some, but I need to be feeling well enough and not so tight to be able to do it. Sometimes it takes 2 miles before my legs feel any "looser" when walking. Hang in there. Hugs!
Ladylazarus,
My SI joints are both intense activity (bone scan). I'm not sure how much that is affecting my legs. I;m really trying to understand all of this and learn as much as I can. I think the not knowing how this disease is affecting my body is scary. Thanks to this group, I am learning so much more about it.
I also have intense activity in both elbows, both ankles, SI Joints, both wrists, both feet, fingers, spine and knees. It is symmetrical.
My legs feel like muscle twitches at times, the bottom of my foot and heel hurts so badly at times I can't stand to put it on the floor.
I'm just one big crazy mess.
I am trying to learn about and understand the fibromyalgia too. I just wonder how much is related to fibro.
PSA and FIBRO, what a combination.
ladylazarus said:
Hi Amy,
I have leg pain too - but that's mostly projected pain from my now chronically inflamed left SI. It goes all the way down. Above my knee, it is on the side of my leg, and below my knee it moves to the front a little until it hits my ankle, and if it's a particularly bad day, the top of my foot even! It's a burning pain. Feels like my leg is being sliced open with a red hot knife. And my leg gets a little heavy.
Also, like a year or two before my diagnosis, I would have these weird leg pains that would keep me up all night. It was a different kind of pain - it felt like someone had put their hands in my legs and were squeezing my muscles. At the time I thought I was too tired or something - how I came to that conclusion I don't know :D Now I'm thinking it might have been fibromyalgia, which I also have and I guess you do too (I think I read that in your hello message), so it might be fibromyalgia as well.
Jules,
currently my legs aren't swollen or at least not like they were when all of this began.
Last July is when I first started swelling and it was really bad. My legs and feet looked and felt like they were going to burst. My PCP put me on a water pill for several months. I haven't had it that bad for a few months now. In the beginning my entire body was swollen and retaining water. I could barley breathe until the water pill gave me some relief. My PCP was concerned about heart failure, now I'm thinking it was this PSA/Fibro monster unleashing itself.
Jules said:
Hi Amy, have you got swelling or fluid retention that is causing the tight sensation?
I've been having leg problems for the last few weeks which started with oedema so alot of what you're saying is ringing bells.
Stoney,
I have a wonderful primary care physician. He has been concerned about me and on a mission to find answers. He ordered the ultrasound of my legs to rule out clots.
I'm still wondering about the relationship with my rheumatologist. He will not listen to any of my concerns or questions. When I tell him about the pain, he says its the fibromyalgia. He has hurt my feelings pretty bad the last three times I saw him and I barley made it to my car without breaking down and crying. My husband was with me at my last visit and was very upset with the way I was treated. This is all new for me. I have a lot of questions and concerns.
SO much happened to me all at once, my PCP is still ordering tests.
During my bone scan, the technician asked me if I have more pain in my right leg. Which yes I do, that is the one that hurts so much. He then asked if I've had a recent injury or precious cancer??? Not that I am aware of. Of course instant alarms went off when he asked that and I have been worried ever since. I have a knot on my right shinbone that hurts so bad. I have tried to ask my rheumatologists about it three times. He dismisses me. He said we all have bumps and knots that we don't feel but because you have fibro, you feel it. It's like he doesn't care at all. He has no idea how much pain I am in. I would love a scan of my leg, a CT or MRI but he said no. I'm worried the day will come that I can no longer walk. I'm trying to hang in there and pray the Cimzia will help.
Thank you so much for the suggestions!! I will definitely ask my primary care physician about it. I don't feel comfortable asking my rheumatologist about anything else. He makes me feel like a child in trouble. I'm also going to see a dermatologist that treats PSA. I don't have the skin lesions but she treats both. Maybe she can help me.
Thank you!!
Stoney said:
It's good to hear that the doctor is being thorough and checking for the worst case scenario, such as blood clots. I have to admit,it doesn't sound an awful lot like PsA pain to me, but here are a couple of thoughts. Inflammation can press on nerves, causing neurological complaints. The "water running" comment made me wonder if it could be from the knees, or Baker's cysts? This is also inflammation related, and more common w/ inflammatory arthritis.
I'm also wondering if other things have been tested, such as for muscle inflammation and/or breakdown. Just throwing out ideas. Maybe it can help you find a new direction.
Seenie,
I agree and I'm definitely going to ask about some of those possibilities.
I think a muscle relaxer would help me and I think a good nerve pill would be wonderful but my rheumatologists said those are crap and won't consider it. He only wants me to take Cymbalta.
As of right now, all I am on, is the Cimzia. Yeah, I'm trying so hard to be the patient patient lol. We've been at this for almost a year now. I've been through so much testing and one scare after another, I think it is wearing me down emotionally. So exhausted physically, mentally and emotionally. I'm trying my best to stay strong though.
I appreciate each of you so very much!!
Thank you!
Seenie said:
I second Stoney's motion! Amy, I'm sorry to hear you are going through this. It's truly awful -- some of my worst pain was leg pain. Mine went from my waist to the arches of my feet, and the worst was when I was lying in bed. Something that helped me was a muscle relaxant. I was still undiagnosed at that point, and my doctor found that really strange (she thought every about me was strange and blew a lot of it off) but taking it at night really helped me. Once my disease was diagnosed and under good control, the leg pain disappeared too, but it took a while. Four weeks on Cimzia, it's a bit early for results yet. Be a patient patient!
IDK why your doctor said the leg pain you describe has nothing to do with PsA. That makes me angry because there are so many variables with the disease and from what I've learned and what I've dealt with myself, PsA unfortunately comes in a variety of aches, pains, burning, stabbing, stiffness, swelling, fatigue, weakness, numbness, depression--there are probably more symptoms--oh yeah, deformities!!!
It just drives me nuts when doctors don't think "out of the box" and realize that each of us feels or describes the pain differently, and they should remember that we're unique individuals and our bodies react differently to the stress of the disease.
My pulmonologist who diagnosed me with asthma 25 years ago told me that some doctors only use what they read in the textbooks. The need to think creatively. I didn't wheeze, so no other doctor thought I had asthma. But, I'd have periods of really bad shortness of breath and hoarseness. She did a "methacholine challenge" (a chamber where they expose you to asthma triggers). I failed it halfway through--they had to stop the test and asked me if I needed an inhaler! I had never used an inhaler before that, but the test showed I had a moderate case of asthma. She was also the one who diagnosed my histoplasmosis. When my GP told me from looking at my x-rays I would need to have a lung biopsy, I was scared to death. When I went to this pulmonologist, she said lung biopsies are really dangerous and they don't always give accurate results. She had a hunch what I had, just from looking at the cat scan, so she sent some blood samples to the University of MN for testing. This was on a Thursday...she told me we'd have results by Monday....she called me Monday to tell me she was disappointed the test results wouldn't be available until Tuesday and to just "hang in there". She was such a great doctor!!! Anyway, Tuesday she called me and said she had some good news and bad news. The good news was, it wasn't cancer, but the bad news was it was histoplasmosis and I would need to go on some strong medicine for awhile to get rid of it. This is the kind of doctor I wish every doctor was!
Hi again Amy, it's great to hear you have such a good PCP but sad that your rheumatologist is such an a**. These diseases are a tough enough battle without feeling that you are also going to be "shot" at by your rheumy. Maybe time to have a frank discussion with your supportive PCP and ask if there is an alternative rheumy your care could be transferred to?
I was watching a medical program on TV the other evening and this lovely lady PCP said "every patient deserves a doctor who practices medicine to the best of their abilities". Just the way she said it nearly moved me to tears and then I realised how sad it was that it needed to be said at all. I think, though, the underlying message is that we don't have to put up with poor doctoring.
Wishing you relief soon.
Hi again Amy,
I too have severe foot and heel pain - the bottoms of my feet feel on fire sometimes. From what I understand it's pretty common with spinal involvement but not necessarily of course. I actually had a pretty rough time until I found some doctor who would listen to me when I say my feet hurt! I don't know why, but doctors tend to look at your face with a blank expression when you say that your feet hurt!
And the overlapping symptoms with fibro makes it twice as hard, I know. I finally accepted the fibro treatment a month, a month and a half ago and that's when I really knew where I had inflammation and where I didn't. I don't know if you're also being treated for fibro too, but you might ask your doctor for something to relieve the fibro symptoms. I was very stubborn before accepting the treatment - probably because of the "mental" stigma that comes with it, but I'm glad that I finally accepted the treatment. I mean, I must have been crazy for not letting my doctor take away some of my very relievable pain! :)
Anyway, I hope you'll feel better soon and welcome! This forum has been a lifesaver for me when I was trying to figure things out... You'll feel supported here and hopefully you'll get some great advice too :)
Amy said:
Ladylazarus,
My SI joints are both intense activity (bone scan). I'm not sure how much that is affecting my legs. I;m really trying to understand all of this and learn as much as I can. I think the not knowing how this disease is affecting my body is scary. Thanks to this group, I am learning so much more about it.
I also have intense activity in both elbows, both ankles, SI Joints, both wrists, both feet, fingers, spine and knees. It is symmetrical.
My legs feel like muscle twitches at times, the bottom of my foot and heel hurts so badly at times I can't stand to put it on the floor.I'm just one big crazy mess.
I am trying to learn about and understand the fibromyalgia too. I just wonder how much is related to fibro.
PSA and FIBRO, what a combination.
Have you tries massage therapy? I swear it is the only thing that keeps me able to walk. I found a wonderful woman that understands my medical issues. It can't help with the joint pains but it keeps the tendons and muscles from getting too tight.
Amy, sorry your having such a hard time on both physical and mental levels. Funny they unfortunately go hand in hand but your recent loss has to make it harder! Its OK to feel that way and all this medical stuff is hard even for those of us who have not had such significant life changes. Have you read the “facts” book yet? It puts some of the difficult medical terms in a readable form. There is also info on the relation of fibro and PSA plus some very useful info about the meds that can sound more scary than they honestly are. Welcome to as GrandmaJ likes to say “the roller coaster”! I am far from one to give advice but many on this site have been able to take the helm on PSA and control it. There is hope but the hardest part is how unique everyone is as a person and as a patient. Hang in there, I am, and be confident that in time we will be telling people like us about it.