Is this kind of leg pain normal?

[anniew1004]

Hello All. This is my first time writing in, although I have been reading the posts for some time now. It has helped knowing that there are others who are feeling and going through what I am. I was diagnosed with MCTD in August. Right now I am in between rheumy's. I am on hyroxychloroquine, gabapentin for the pain, and a water pill to help with the edema. I got in touch with my GP to let her know the pain and mobility are getting worse and she just put me on a low dose of prednisone for the next 30 days to help with inflammation. My GP is a very nice lady, but she herself will admit she is out of her league with what is going on with me. My appointment with new rheumatologist is not until June, unless someone cancels. I need to know if what I am experiencing is what any of you have experienced. My leg pain is excruciating. I have a high threshold for pain, but this is really taking a toll. When this first started, I would get severe muscle cramps in my thighs that would stop me in my tracks and when rising from a seated position my leg would lock and I wouldn't be able to move until it "unlocked". What felt like muscle pains, heavy legs, sometimes legs feeling like rubber bands, and occasionally my legs would give out on me. But now the pain has progressed rapidly and most days I need a cane to walk. And some days, I just can't walk at all. My legs give out on me quite a bit more. Sometimes the pain feels like intense muscle pain, as if I just ran a marathon. Sometimes the pain feels like someone is wringing my leg bone. Other times when I try to put any weight down on my leg, the pain is so bad it feels as though my leg bones are about to snap and rip through my leg. Is this kind of pain normal for my disease? Any feedback would be appreciated.

[Hidden]

Hi - sorry you are having a bad time with your MCTD. I don't know what mix is affecting you but couldn't your GP send you for an ultrasound or X-Ray of the affected leg and then on to physiotherapy?

My sister had a similar problem and was told that she could have several months of intense physio to prevent her needing a total knee replacement as the wear and tear arthritis had already damaged her joint.  She is too young for a joint replacement as still in her 40s.  She doesn't have MCTD though just OA. 

But even if the arthritis side of things isn't RA - you may still need a DMARD such as  methotrexate adding in as well as Hydroxy to slow down joint erosion. 

If you feel much better on steroids that's a sign that the pain in your leg is inflammatory rather than just osteoarthritis. Don't overdo it though because steroids can mask the pain that is telling you not to do too much. 

[anniew1004 in reply to Hidden]

I agree twitchytoes that an ultrasound or x-ray would be a good idea. I have asked for imaging of my leg several times, but it was never deemed necessary by the physician. I will run it by my GP once more at my visit in April. It is to the point now where I am basically trapped in my home. I tried making a trip out Easter shopping for my kids, after ten minutes the pain was so horrible I was gripping onto the shopping cart trying to hold back the tears. Every step was excruciating pain. I barely made it out of the store and to my car. Something has got to give. This last bout has been going since October. It has never gone on this long without any relieve.

[paula1969 in reply to anniew1004]

Hi

I have sever pain in my lower back hips and legs and kept telling consultant and gp I thought it was blood clots and they both said no so I took myself to a&e 1 blood test and confirmed blood clots. So if you are worried please dont wait weeks or months for next appointment as the dvt clinic told me to always go a&e as dr's are all about the costs not the patient. 

Good luck and I hope your feeling better soon.

X

[anniew1004 in reply to paula1969]

Hi Paula

Sorry to hear that. It's unfortunate that some doctors have not discovered that most patients do understand their own bodies and know when something is not right. From time to time I do wonder if there is something else going on. But there is no constant, which is why I am unsure. Depending on the day or the hour, the pain is different. Sometimes what feels like intense muscle pain, sometimes the not being able to put weight down on my legs, sometimes I look like Frankenstein's monster walking around because my legs feel so tight it's as if they can't bend. I guess if things continue to worsen, I will have to see someone before my next gp visit in two weeks. Discussion of blood clots was brought up previously, but there was no redness or swelling or any other indication of a clot so that's as far as that went. Maybe like Twitchytoes suggested, I need to have a discussion with my gp about having  my meds adjusted as well.

Thank you, Paula.  Hope you are feeling better also.

[paula1969 in reply to anniew1004]

Hi

I had no swelling or redness either. 1 blood test will give the answers. I am also stiff as a board walking is a real chore and worse morning and evening.

Take care and let me know how you get on.x

[anniew1004 in reply to paula1969]

It's definitely worth checking into. What's one more blood test? I will keep you updated. Thank you. Gentle hugs