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Calf Pain for over 3 years with no diagnosis
I (32 F) am hyper mobile with a current BMI of 36 after losing 45 pounds in the past 9 months. I have been having pain in my left calf that no doctor I have seen in the last 3 years can figure out a cause for. The pain started around the beginning of 2022 with me first bringing it up to my primary care doctor in May 2022. When the pain first started it would only happen after I was sitting and would take my first step I would get a severe pain in the back of my calf during the part of my walk where my weight is all on that leg. The pain was absent when sitting and standing and only happen during walking and would last from 10 steps or longer but would eventually stop. It did not happen every time I sat but I did notice certain chairs made it happen more frequently. Eventually this has progressed to the pain starting while walking. I can be pain free for many steps then suddenly the pain is there and can last for minutes to hours being felt with every step but just standing was pain free. Then it would randomly start while I was standing and movement did not help. I even randomly get pain now while sitting or even while laying down. There is no obvious swelling. Left calf actually measures slightly smaller. It does hurt to push on my calf muscle on the left side.
Jan 2022 - pain started
May 2022 - Primary care had me try muscle relaxers before bed for weeks with no improvement. Eventually my right calf started doing the same thing.
November 2022- injured tailbone and knocked wind out of myself. breathing hurt for months and could not sit on tailbone due to pain.
Mar 2023 -Appointmemt with pain management. Ordered Ganglion Impar Block for tailbone and physical therapy for calf pain. Also started pregabalin but after slowly increasing dose for months no effect on pain so was tapered off.
April 2023 - First ganglion impar block. Stopped the tailbone pain for 6 months but also strangely stopped the calf pain but only for about 1 month.
May 2023- Went to physical therapy weekly for about 6 weeks. Was taught stretching, strengthening, massage. Had metal instrument scraped over back of leg to break up fascia and promote healing. Was also recomended to wear compression socks and use topical ibuprophen. No effect on pain.
Dec 2023- second ganglion impar block. same effect on tailbone and calf pain as the first one.
Dec 2023 - appointment with valscular to check for peripheral artery disease. Within 5 minutes was told not a vascular issue.
Dec 2023 - appointment with sports med. X-ray taken =normal. MRI of lower left leg Ordered. EMG and neuro consult ordered. Discussed exertional compartment syndrome but said does not fit well enough to test for.
Jan 2024 - MRI shows fluid signal on T2 weight images along the gastrocnemious.
Feb/Mar 2024 -EMG normal. Neurology orders MRI neurogram left upper and lower leg. Discussed possible focal myostosis. CK ordered =normal
Apr 2024- MRI shows similar fluid signal as previous MRI 4 months earlier. Refused to order muscle biopsy with a normal CK.
April 2024 - Checked to see if artery behind left knee is being closed off when knee is bent. Test is normal.
May 2024 - Sports med does not no what to do so refers to Mayo in Rochester but after speaking to them they do not accept my insurance and I can not afford to pay out of pocket for more testing there.
May 2024 - Last time the right calf has hurt like the left calf.
Aug 2024 - 3rd Ganglion impar block that fails to fully work for calf or tailbone.
Nov 2024 - discussed prolotherapy option for tailbone and brought up calf pain. Tried 4 sessions of Osteopathic manipulation of calf fascia that I was told Had many fascia herniations. No effect.
Nov 2024- started getting pain in left foot arch that typical starts after hours of being on feet ( not fitting plantar fasciitis) Does not seem to coincide with calf pain.
Dec 2024- 4th ganglion impar block.
Worked like the first and second block.
Mar 2025 - Talked to primary care about pain and what doctor to try to see/ any unexplored option. Does not know what to try. Orders MRI neurogram of left lower leg but still awaiting results. Orders MRI of lumbar spine to check for sciatica- Normal
Had a MRI of pelvis at some point that was also normal.
So here I am over 3 years later with no answers and pain ( that can get as bad as a kidney stone) everyday in my left calf. Anyone have a similar case? What type of doctor should I try to see? If there is still fluid in the newest MRI should I insist on a muscle biopsy to check for myostosis or compartment testing? Any other ideas? Even if the pain can not be treated I would really like an answer as to why this is happening.
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@blu93
You mentioned you have lost some weight and what your BMI is. Do you have diabetes or are you pre-diabetic? I was reading about how BMI may affect knee joint/muscle connections and MRI results. See this link for more information.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5121968/
I have a high BMI and believe it has caused me many issues with nerves/skin/muscle connections/tendons, etc. Extra fat tissue places more pressure on tissues and joints and may cause micro injury and fluid retention over time.
For example, I had significant hip pain and had a MRI show I have bilateral gluteal tendinopathy plus bilateral hamstring high grade partial tears and have no idea how this happened. I did not have a traumatic fall or accident to cause this. My thoughts are that my weight, sitting for long periods for years due to my desk job, plus my cervical myelopathy spinal cord compression injury (making/controlling movement of limbs more difficult), this caused pressure/compression injuries to my muscles/tendons over time. I am also hypermobile which may have played a role, too.
Do you have hypermobile joints?
I have not had blood sugar testing since loosing weight but my fasting sugars had been in between 100 and 110 with an A1C of about 5. when they were testing me for small fiber neuropathy last summer they had me do a test where after fasting I had to drink a certain amount of a special orange drink and sit for 2 hours to check how my body was using insulin. Type 2 is 199 or more after 2 hours, mine was 194. That was one of the reasons I started working on loosing weight.
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1 ReactionMy Fingers, Wrists, hips and knee are hyper mobile. my elbows are not. I score a 7 out of nine on the hyper mobile test.
@blu93
Keep up the good work on your weight loss. I need to really work on it this year. My dogs need to lose weight, too! 😉🐶
My mom had heart disease, RA, lupus, Type 2 diabetes, Hashimoto’s, etc. I am not diabetic but my A1C is going up and I am definitely at risk. I have Hashimoto’s, too, and thyroid issues are connected to heart, diabetes, etc. My losing weight will help me avoid full blown diabetes and reduce my risk of heart disease. It will also help my joints and ability to exercise. I’m sure I would have much more energy if I lost weight.
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2 ReactionsI am hyper mobile but don't think that is related to your problem. When I was in my thirties (pregnant) I had horrible pain in my left calf. It tells you something when it is not bilateral. For me, it ended up being resolved by some suppliments (think it was K) but then it appeared again in my late 30s to 40s as sciatic pain and by 50 as nerve pain up and down in various parts of my leg and foot. It turned out to be disc degeneration and my nerve roots were impinged to finally my disc falling out and my nerves crushed to their death by 2018. I finally got a GREAT spinal neurosurgeon who asked to do surgery immediately. My prince charming! After 4 surgeons and all kinds of stupid disconnected evaluations and testing. I am a firm believer that most referred pain comes from nerves being damaged. You just have to figure out where from. It took a village and several surgeries - including having my hips replaced because ending up at my spine. Try MFR (great section here) and continue to work with PT and rehab. Here's a clue: IF YOU CAN'T RESOLVE IT LOCALLY (like its numb or itchy and you can't scratch the itch or numb the pain) its REFERRED. You can have nerve testing done from the spine and/or facet joints as opposed to muscle nerve tests. You will probably find that one of the nerve roots out of your spine is causing the problem in your calf. Good luck! Be sure to advocate for yourself because the doctors really don't do that anymore.
New MRI shows
There is increased T2 signal intensity within the distal aspect of the medial greater than lateral heads of the gastrocnemius muscles.
Patchy intramuscular edema within the medial margin of the soleus, peroneal, anterior tibialis. and extensor digitorum muscles. There is no muscular atrophy.
Tiny foci T2 hyperintensity involving the fascicles of the deep peroneal nerve (axial images 36 and 49 of series 6) without associated enhancement.
The bone marrow signal intensity of the tibia and fibula is normal. There is no soft tissue mass.
@blu93
I looked up some of the details in your new MRI. See below. You definitely need to investigate further what may be causing your edema/inflammation/denervation and pain in the middle to lower part of your calf muscles and connecting tendons/ligaments. It seems your MRI is showing injury or autoimmune response.
T2 Hyperintensity in Musculoskeletal Imaging
Moving beyond neuroimaging, T2 hyperintensity also plays a role in musculoskeletal imaging. Common scenarios include:
Soft Tissue Pathologies: Injuries or abnormalities in soft tissues, such as muscles and ligaments, may manifest as T2 hyperintensity on MRI scans.
Joint Disorders: Conditions like arthritis can lead to changes in joint structures, often detectable through T2-weighted imaging.
Fluid Collections and cysts: Fluid collections and cysts will be hyperintense on T2 weighted sequences.
Conclusion
T2 hyperintensity is brightness on T2 MRI sequences. This is a finding or descriptive term and does not indicate a diagnosis. T2 Hyperintensity can be found on MRI scans of the entire body.
Alterations in muscle signal intensity seen in pathologic conditions usually fall into one of three recognizable patterns: muscle edema, fatty infiltration, and mass lesion. Muscle edema may be seen in polymyositis and dermatomyositis, mild injuries, infectious myositis, radiation therapy, subacute denervation, compartment syndrome, early myositis ossificans, rhabdomyolysis, and sickle cell crisis. Fatty infiltration may be seen in chronic denervation, in chronic disuse, as a late finding after a severe muscle injury or chronic tendon tear, and in corticosteroid use.
1.
https://radiopaedia.org/articles/skeletal-muscle-oedema-on-mri-differential
2. https://pubs.rsna.org/doi/full/10.1148/radiographics.20.suppl_1.g00oc18s295
3. https://pmc.ncbi.nlm.nih.gov/articles/PMC3483739/
4. https://www.acibademhealthpoint.com/intramuscular-edema-causes-care/
My arthritic right hip causes severe pain similar to yours throughout my lower right quadrant, ankle to right testicle & belly but I’m sure your MRI ruled that out.
@billmason
I did have X-rays and MRI of my hips and I do not have a degenerative joint but do have soft tissue tears bilaterally in gluteal tendons and hamstrings. This is painful.
Have you ever had a MRI of your cervical and lumbar spine to see if you have any compression/flattening of spinal cord/nerve roots or nerves causing your lower body symptoms? Did you see a neurologist for EMG/nerve conduction studies of your lower limbs? Did you ever get a neuropathy check of bloodwork and small fiber neuropathy skin punch biopsy of thigh/ankle?
Thanks! You clearly have learned a lot more than I.
At my age I’ve decided to do the best with what I’ve got. Not willing to give up what time I’ve got left with tests-surgery-recovery and uncertain results. Wishing you the best!
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