can severe calf pain without exercise be caused by lupus or ra

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First of all let me say hi and thanks for allowing me to join smile I will be very appreciative and welcome ANY ADVICE I get because I'm kind of out of options at this point and I need help

My problem is this. I was diagnosed with juvinile ra at the age of 12 along with severe debilitating endometriosis. This was back in 1994/1993. This was treated with extremely high doses of ibuprofen for the pain it caused because due to my age the didn't want to go with opiates for obvious reasons. The dose I was on was 4x 800mg Ibuprofen a day. At the time I trusted my drs but I will say that at 34 I weigh 93# and am only 4'11" and that i was way smaller at 12. I continued this dose for 2 years which resulted in renal failure and continuous renal insufficiencey. That being said I can no longer take NSAIDS or any medication containing NSAIDS properties forcing the drs to use opiates to control the pain. I've run the gauntlet of opiates including everything from Ms contin to oxy to vicodin. That being said I am now a single parent and pain or not need to stay sharp so due to choice I tapered from 30mg oxy 3x daily to 10 mg hydro 4x daily. I find this sufficient enough to control your pain enough that I can take care of responsibilities without being loopy but I am still in chronic sometimes debilitating pain (worth it for my son). In 2007 I got a miracle handed to me when I got pregnant with my son which drs had told me would NEVER happen due to the endometriosis. But on examination for prenatal was found to have stage 4 uterine cancer which left me with a choice. The dr solution was to terminate due to the risk to both me and my son. However, I'm a fighter so I chose to continue with close monitoring of the cancer and prenatal. Long story short the cancer spread and the pregnancy destroyed my kidneys further resulting in one BEAUTIFUL PERFECT BABY BOY, but also 8 surgeries the year he was born, and subsequent chemo and radiation treatments to BEAT the cancer smile that being said during my treatments they combined the anomaly in my blood work with past medical history and diagnosed me lupus. Which brings us to now. The endo is gone due to a complete hysto. So my DX at this point include SLE, RA, chronic pelvic pain (due to adhesions from surgery and endo) PTSD, and chronic renal insufficiency as well as late diagnosed scoliosis. My current meds are as I said the 10mg hydro 4x daily, anti malarial Iv 2x monthy, xanax 3 mg daily as needed (only taken at night aside from occasional daytime panic attack or triggers) and ambien (only used for sleep), methotrexate (dose changed often) and prophylactic cipro to prevent imfection. I will say that so far so good as far as meds go. I have way less problems with the lupus and the ra. But for the last few months I have been waking up in the morning with severe pain in my calves making it feel as if they are too short. This comes out of nowhere. I'll be fine one night and go to sleep only to wake up the next 5 day/sometimes we weeks with a problem so bad I can't get out of bed and walk. I have asked all my drs what is causing this and they always tell me it's lupus or ra but I'm very self aware and it doesn't seem to correlate with times I know my pain is from ra or lupus. For example this is not times when my joint pain flares. It doesn't seem to be linked with anything as far as I can tell so am I just being naive or could this possibly be a result of long term opiate use? Tylenol use? Or maybe another med I'm taking? Any suggestions as to when this happen what could help? I'm not above using homeopathic remedies or any use of the limited expertise I'm allowed. I just need help and don't want to have to go back to taking a higher opiate but with this problem the pain meds do nothing at all anyway.

Thank you to everyone that reads this. I'm sorry it's so long but I thought the history may play a part in helping you guys understand where I have been so as to better help smile once again thanks in advance for any advice given as I'm willing to try anything at this point!!!!

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  • Posted

    Hi Carolyn 

    i will do my best

    first are you in the UK ?

    are you medical in any way?

    i can personally relate to much of what has happened to you. I am away at present and little charge on my iPad. If you could resend as it is complex so I don't miss sorry down to 2%

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    • Posted

      Sorry I'm in the us. Did I find my way to the wrong site sad that would be horrible. How do I resend? Sorry just joined today so I'm still a little clueless
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  • Posted

    My problem is this. I was diagnosed with juvinile ra at the age of 12 along with severe debilitating endometriosis. This was back in 1994/1993. This was treated with extremely high doses of ibuprofen for the pain it caused because due to my age the didn't want to go with opiates for obvious reasons. The dose I was on was 4x 800mg Ibuprofen a day. At the time I trusted my drs but I will say that at 34 I weigh 93# and am only 4'11" and that i was way smaller at 12. I continued this dose for 2 years which resulted in renal failure and continuous renal insufficiencey. That being said I can no longer take NSAIDS or any medication containing NSAIDS properties forcing the drs to use opiates to control the pain. I've run the gauntlet of opiates including everything from Ms contin to oxy to vicodin. That being said I am now a single parent and pain or not need to stay sharp so due to choice I tapered from 30mg oxy 3x daily to 10 mg hydro 4x daily. I find this sufficient enough to control your pain enough that I can take care of responsibilities without being loopy but I am still in chronic sometimes debilitating pain (worth it for my son). In 2007 I got a miracle handed to me when I got pregnant with my son which drs had told me would NEVER happen due to the endometriosis. But on examination for prenatal was found to have stage 4 uterine cancer which left me with a choice. The dr solution was to terminate due to the risk to both me and my son. However, I'm a fighter so I chose to continue with close monitoring of the cancer and prenatal. Long story short the cancer spread and the pregnancy destroyed my kidneys further resulting in one BEAUTIFUL PERFECT BABY BOY, but also 8 surgeries the year he was born, and subsequent chemo and radiation treatments to BEAT the cancer  that being said during my treatments they combined the anomaly in my blood work with past medical history and diagnosed me lupus. Which brings us to now. The endo is gone due to a complete hysto. So my DX at this point include SLE, RA, chronic pelvic pain (due to adhesions from surgery and endo) PTSD, and chronic renal insufficiency as well as late diagnosed scoliosis. My current meds are as I said the 10mg hydro 4x daily, anti malarial Iv 2x monthy, xanax 3 mg daily as needed (only taken at night aside from occasional daytime panic attack or triggers) and ambien (only used for sleep), methotrexate (dose changed often) and prophylactic cipro to prevent imfection. I will say that so far so good as far as meds go. I have way less problems with the lupus and the ra. But for the last few months I have been waking up in the morning with severe pain in my calves making it feel as if they are too short. This comes out of nowhere. I'll be fine one night and go to sleep only to wake up the next 5 day/sometimes we weeks with a problem so bad I can't get out of bed and walk. I have asked all my drs what is causing this and they always tell me it's lupus or ra but I'm very self aware and it doesn't seem to correlate with times I know my pain is from ra or lupus. For example this is not times when my joint pain flares. It doesn't seem to be linked with anything as far as I can tell so am I just being naive or could this possibly be a result of long term opiate use? Tylenol use? Or maybe another med I'm taking? Any suggestions as to when this happen what could help? I'm not above using homeopathic remedies or any use of the limited expertise I'm allowed. I just need help and don't want to have to go back to taking a higher opiate but with this problem the pain meds do nothing at all anyway.

    Hopefully that was helpful lol and to answer a question I forgot no I'm not in the medical field but have a very large medical knowledge base so know things that even some nurses don't

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  • Posted

    Lupus can lead to cardiovascular damage (especially where phospolipid antibodies are found), and this can eventually lead to conditions like peripheral artery disease (PAD). PAD causes calf cramps that generally arise after walking a short distance. However, they may also come on without activity or seemingly at random. A doppler ultrasound or CT angiograph can diagnose the condition or help to rule it out.

    A more common cause is an imbalance of electrolytes, and this is more likely the case when the cramps aren't constant and progressive. Leg cramps are often a symptom of magnesium or sodium deficiency, and can be eased by supplementation. Potassium or calcium can also be too low, or dehydration may be present, which often goes hand in hand with electrolyte issues. Renal failure is a significant cause of electrolyte imbalances because the kidneys regulate levels of these minerals.

    To help rule out the more common causes, you can consult your doctor in regards to taking supplemental magnesium, or consuming more salt. You need to consult your doctor first before supplementing electrolytes due to the renal failure. A blood test can also help measure levels of electrolytes and reveal whether there is any imbalance present before considering supplements.

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    • Posted

      Thank you so much for the info!! smile I think your right about dehydration. I am consistently dehydrated and so it is probley likely that is the cause!! I drink alot but when I'm given a ua it always comes back showing dehydration. I had no idea it cause this though. Is there something specific I can drink that would help. I do drink 8 glasses of water a day plus coffee and juice in between. Or supplements that would help me retain some of my electrolytes more easily?
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    • Posted

      You're welcome and I'm glad you found it helpful.

      Just mainly drinking plain water is fine because you don't want to mess around with electrolyte drinks or anything like that until you get your doctor's okay and a little testing done. You may be dehydrated due to electrolyte imbalance, even if consuming enough water, and this can be corrected when the electrolytes are corrected.

      If you can test blood levels of the electrolytes, as well as maybe 24 hour urine levels, this will help establish a baseline, as well as show whether your kidney condition is resulting in over-excretion or retaining too much of a specific electrolyte. Then your doctor can recommend safe ways to manage this.

      As for retaining more electrolytes, there are some studies that suggest diuretics can be used in renal failure patients to try and balance out levels to what they should be, and natural supplements with diuretic properties would have a similar effect, but it's still unclear whether this could be harmful or not. It'd likely be safest and most effective to just consume more or less of an electrolyte based on what your test results show to try and get it closer to where it should be. The kidneys manage electrolyte levels by excreting them when there is too much, or retaining them when there is too little, and this is impaired during renal failure. You'd have to adjust your actual intake to reduce the difficulty of this task on the kidneys.

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