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amkaloha
@amkaloha

Posts: 62
Joined: Sep 02, 2016

Swollen legs and feet

Posted by @amkaloha, Sep 2, 2016

I have been struggling with chronic pain for over 10 years. I was diagnosed with fibromyalgia, have arthritis all over my body mostly in my knees, rotator cuff damage in both arms, neuropathy and recently diagnosed with polymyalgia rheumatica. I am tired all the time, from when I step out of bed in the morning and then many nights can’t sleep an uninterrupted 6-7 hours. My skin is always itchy and sometimes breaks out in rashes. I am in constant pain and take tramadol 50 mg 2x a day for pain and methylprednisone 4mg for the PR. Recently my legs and feet have been swelling and I was given bumetanide 1mg for fluid. However, this does not bring the legs down much. I have to walk with a walker and find it very painful to go from room to room. My problem is that I do not know what kind of doctor to see to begin with. Cardiologist, neurologist, rhematologist, vascular, etc, etc!!! Could anyone point me in the right direction? I am a 76 year old woman and live in Florida. Thanks for any help. PS, I prefer to take natural remedies instead of drugs.

REPLY

Welcome to Connect, @amkaloha. I’d like you to meet @elizamail and @johnbishop. John also has polymyalgia rheumatica and neuropathy.
You may also be interested in meeting the members in these groups and discussions:
– Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2c0mXSO
– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq
– swollen ankles http://mayocl.in/2bQWWkb

Amkaloha – have you ever checked about the Pain Clinic at Mayo Clinic, Florida?

Hello @amkaloha. I’m sorry to hear you are having problems with the pain associated with your PMR. I have had 2 episodes of PMR. I was in remission up until about a month ago. Both times prednisone (20 mg) was prescribed – first by a rheumatologist and this past flare up a month ago it was prescribed by my Mayo family doctor. Did a rheumatologist diagnose the PMR? The first time I was diagnosed in 2007, I was in extreme pain and my right leg was swollen badly. The joint in my right knee had fluid build up and they drained it and gave me a steroid shot in the knee of some kind that helped. If you haven’t seen a rheumatologist recently it might be beneficial to setup an appointment to see if there may be something else going on.

Take medical cannibus cbd hi level of cbd and vape it for pain

@colleenyoung

Welcome to Connect, @amkaloha. I’d like you to meet @elizamail and @johnbishop. John also has polymyalgia rheumatica and neuropathy.
You may also be interested in meeting the members in these groups and discussions:
– Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2c0mXSO
– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq
– swollen ankles http://mayocl.in/2bQWWkb

Amkaloha – have you ever checked about the Pain Clinic at Mayo Clinic, Florida?

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Thanks for the welcome. Can you tell me more about the Pain Clinic? I’m not sure where to begin and perhaps this might be a good start. I was going to go to the Mayo Vascular doctor but was not sure about whether that was the right place to start and didn’t want to waste his time. Any other suggestions would be appreciated. Thanks. Andrea

@johnbishop

Hello @amkaloha. I’m sorry to hear you are having problems with the pain associated with your PMR. I have had 2 episodes of PMR. I was in remission up until about a month ago. Both times prednisone (20 mg) was prescribed – first by a rheumatologist and this past flare up a month ago it was prescribed by my Mayo family doctor. Did a rheumatologist diagnose the PMR? The first time I was diagnosed in 2007, I was in extreme pain and my right leg was swollen badly. The joint in my right knee had fluid build up and they drained it and gave me a steroid shot in the knee of some kind that helped. If you haven’t seen a rheumatologist recently it might be beneficial to setup an appointment to see if there may be something else going on.

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Thanks for your reply. My diagnosis was strange. I had been suffering with a lot of pain in my arms, shoulders and across my back but thought it was due to rotator cuff damage. It got worse and when I was at my primary care doctor’s I told her about it. It was like a light went on and she said “you have poylmyalgia rheumatica.” But there was a problem. The treatment is with prednisone, but I tend to have a high fasting sugar level (120-130). She didn’t want to give me prednisone because it has a tendency to raise the sugar level. She then did some investigating and found that there were some helped with methotrexate. I then tried that but it made me sick. In the meantime I had a terrible rash on my leg and went to Urgent Care. They gave me methylprednisolone, and, when I took it I found it did not raise my sugar much. So I told my doctor and she then gave me the 4mg of methylp once a day. It sure helps with that pain and I did try to come off of it recently and after a week I had to go back on it. My legs and feet are swelling pretty badly now and some have suggested that it is the prednisone. It’s one of those, damned if you do, damned if you don’t situations. The swollen legs only complicate my leg pain due to arthritis. I’ve been told that I have bone on bone in both knees. A few years ago I went to the orthopeadic doctor and he said I had to lose about 50 lbs and come back. That never happened and here I am with legs that don’t work!!! I just feel like one of those hamsters who keep running around in circles and never get anywhere. Thanks for listening and I’d really appreciate it if you had any suggestions. Thanks. Andrea

@tonyc55

Take medical cannibus cbd hi level of cbd and vape it for pain

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Thanks for the reply. From what I’ve read and heard, cannibus has lots to recommend it. Florida is in the process of making it legal for medical purposes. It doesn’t make sense that they can give you morphine and the like but keep such restraints on this especially when it helps so many people and is much less dangerous than oxycodone and the like. Andrea

@johnbishop

Hello @amkaloha. I’m sorry to hear you are having problems with the pain associated with your PMR. I have had 2 episodes of PMR. I was in remission up until about a month ago. Both times prednisone (20 mg) was prescribed – first by a rheumatologist and this past flare up a month ago it was prescribed by my Mayo family doctor. Did a rheumatologist diagnose the PMR? The first time I was diagnosed in 2007, I was in extreme pain and my right leg was swollen badly. The joint in my right knee had fluid build up and they drained it and gave me a steroid shot in the knee of some kind that helped. If you haven’t seen a rheumatologist recently it might be beneficial to setup an appointment to see if there may be something else going on.

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Hello Andrea. Thank you for the additional information. If possible I would try to setup an appointment with a rheumatologist as they generally have more knowledge/experience with arthritis related conditions. Prednisone was the magic pill for me and the only side effect I had was weight gain…which I’ve always struggled with.

I am so sorry you are having the pain and swelling. It really sounds like when my polymyalgia rheumatica was diagnosed at first in 2007. I also had higher than normal glucose labs. Mine are still fairly high although I do not have diabetes. My GP family doctor told me she thought my peripheral neuropathy was caused by pre-diabetes condition but I really don’t think so. My glucose numbers have been from 104 to 120 for almost 20 years. Last Feb it was at 115. Please keep us updated if you can.

 I have peripheral neuropathy  from my neck to my hand . Severe pain all the time and waiting for one more conductive nerve study test to be done hopefully this week. this has been a nightmare and also bed ridden because if I stand up my arm fills up and doesn’t drain properly.The pain medication I”m on makes nauseous. i’ve been suffering since 2012 progressively , i’m just praying that Dr. Murray MD. fixes the problem after this KMG nerve conduction nerve test . Everyone at the clinic is in my prayers and are in pray chains all over the world.    

Thanks for the reply. I am sorry to hear about your neuropathy pain, sounds awful. Could your arm filling with fluid be connected to lymphemema? That is what was suggested about my legs but haven’t been able to get a definite diagnosis. I hope and pray that Dr Murray helps you. Thanks for the prayer; you can never have too much prayer! God bless. Andrea

@bessygo

 I have peripheral neuropathy  from my neck to my hand . Severe pain all the time and waiting for one more conductive nerve study test to be done hopefully this week. this has been a nightmare and also bed ridden because if I stand up my arm fills up and doesn’t drain properly.The pain medication I”m on makes nauseous. i’ve been suffering since 2012 progressively , i’m just praying that Dr. Murray MD. fixes the problem after this KMG nerve conduction nerve test . Everyone at the clinic is in my prayers and are in pray chains all over the world.    

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Sorry, II should have replied to your post. Please see my post below this. Blessings. Andrea

I do understand. I am 73. Have dealt with chronic pain over 23 years. Fibromyalgia, arthritis in spine, hands and recently diagnosed with Polymyalgia rheumatic. My left shoulder & arm hurt a lot. I am on Prednisone 20 mg dail, which does create it’s own problems. I could not walk before starting Predisone. I still have a hard time walking my thighs hurt so badly it is hard to put any pressure on them. Am looking for the right Doctor also. I was told it will be 5-6 month wait to see a Rheumatologist. Not sure what to do. I just try to survive each day. Best to you. Getting older definitely is not for sissies.

I’m 76 and I take cannibus high in cbd get the oils for severe pain

Does it work good for you?? I use ice packs on the muscles that hurt worse. That’s all I have to work with. I also just moved to Arkansas. Probably not legal here.

@sheripay

Does it work good for you?? I use ice packs on the muscles that hurt worse. That’s all I have to work with. I also just moved to Arkansas. Probably not legal here.

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Yes! To bad you are in Arkansas

@sheripay

I do understand. I am 73. Have dealt with chronic pain over 23 years. Fibromyalgia, arthritis in spine, hands and recently diagnosed with Polymyalgia rheumatic. My left shoulder & arm hurt a lot. I am on Prednisone 20 mg dail, which does create it’s own problems. I could not walk before starting Predisone. I still have a hard time walking my thighs hurt so badly it is hard to put any pressure on them. Am looking for the right Doctor also. I was told it will be 5-6 month wait to see a Rheumatologist. Not sure what to do. I just try to survive each day. Best to you. Getting older definitely is not for sissies.

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Thanks for replying sheripay. I sure can relate to you! I have found that the rheumatologist I have gone to has not helped me in the past so I gave up on him. He is big on giving things like Lyrica and another on which begins with an S (I can’t remember the name of it). These meds make me sick. In fact I’d like to get off the prednisone, but seem to be having a problem doing that. I’m not a glutton for pain!!! Is the 5-6 month wait for a doctor at Mayo? Perhaps it would be worth it. They suggested a pain specialist to me but I feel that would just cover up what the real problem is. I’d like someone to find out what is causing all this so I can attend to that. It seems that every day I have another new health issue. You are so right about getting older not being for sissies!

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