Swelling Due to Fibromyalgia

Symptoms & Treatments
1

Hello all,
The past few weeks, I have been suffering from horrible swelling/inflammation - worse than usual, I should say. It is mostly in my forearms, wrists, hands/fingers, ankles, and feet. The muscle spasms and pain in my neck also get worse when the swelling happens. The left hand/arm is always worse, which is a bad thing because I am lefty. It is so bad that my shoes feel too tight and my wedding band doesn’t fit when I swell. A couple of times my fingers turned purple from the swelling and losing circulation, so I no longer wear my rings. I take Celebrex for the swelling/inflammation, but lately even that hasn’t been offering relief. My mom always notices when this occurs because she always comments on the swelling when it happens.

I’ve tried almost every variety of ointment, bengay and lidocaine patches, heat and ice, soaking the affected area in warm salt water, wrapping affected area in ACE bandages, and other things I can’t think of right now. As for medication, in addition to Celebrex, I’ve tried Lyrica, Savella, Gabapentin, and I think one or two others in the same family. I had the same problem with all of them - the lower doses didn’t help and the higher doses helped but made my swelling so bad that my body ballooned up and I had to be put on a course of Prednisone, twice. (I know I’m using swelling and inflammation interchangeably here, but I don’t know which problem I have.)

I’ve been tested for arthritis and similar conditions multiple times and all tests come back normal. I also suffer from a horrible burning sensation, mostly in my neck and back, as if my body is on fire. I’m assuming it’s nerve pain. It often, although not always, happens in conjunction with the swelling.

I asked my pain doctor about the swelling and burning and mentioned the aforemetioned ring example. He said I’m probably just allergic to the metal in my ring. This can’t be true because my ring is platinum and I also wear gold, silver, and “fake” rings with the same effect, and it ONLY happens on days I swell. (Which is everyday lately.) He won’t do anything to check out this problem and help me out. Also, it is possible to feel lumps in my arms or like a tenderness in my ankles/feet when the swelling happens (as if they are water-filled), and I wear no jewelry on my ankles and feet, and usually no socks or shoes around the house.

I am at a loss as to what to do at this point. The swelling affects my life in a big way. Some days I can’t even dress. Any suggestions would be greatly appreciated. Thank you!
~Tia

2

I am confused about the swelling. Is it like water retention? Or the swelling one gets from having surgery? Or the swelling you get from "spraining" a joint?

Do you have a Primary care doctor? Could you get a reference to a bone Dr, an internist, a urologist , even a dermatologist? Your pain doc must have had an off day to give you that response.

Have you tried any super foods to help with the inflammation? Celery, ginger, basil, chamomile, rosemary, raw garlic, rhubarb, spinach & blueberry. I only mentioned the ones that you can get at any grocery store. M

3

Hello Luna02,

The swelling in my feet and ankles makes them feel puffy - if that makes sense. Same thing with my fingers/hands/wrists. It's very painful. My forearms feel lumpy and raised, like if I had sprained something. This isn't all the time - it comes and goes, especially in the rain. The past two-three weeks though, it's been consistent. My Mom says my face swells too - it puffs up - but I guess I don't notice that because I see my face everyday and have TMD so am used to pain in my face.

I am going to see my Primary Care doctor to see if she can help me or refer me to someone who can. I already called for an appointment. I'll try the superfoods if she recommends it, since I don't know what is causing my swelling/inflammation.

I don't think my pain doc had an off day. He was helpful in the beginning, but now he's just been patronizing. He wants me off my meds completely, but won't offer me help in getting other non-med therapies to manage pain. I've reduced my medication by 75% in 7 months (and completely got off of two others) despite the fact he knows I've been suffering withdrawal symptoms and struggling with day to day activities after the 60% reduction point. He won't offer complementary/integrative therapies to help with the pain or refer me elsewhere. I need something to help with pain if not medicine. He is telling me that if I can't reduce down to 0% on my own, he'll force me. (Mind you, I've only been seeing him for a year, but I've been on these and other stronger meds for 9 years now.) He thinks I don't need medication or alternative therapies, but rather "group therapy", as in counseling. I don't think therapy is a bad thing, but it won't help my physical pain, and my emotional pain largely stems mostly from the physical. The physical pain won't go away from me complaining to a group of people that my neck and shoulders hurt, I have a burning sensation in my neck and back, swelling, fatigue, and brain fog. They can offer support, sympathy, and suggestions, but not solutions for physical pain that even doctors don't know the source of.

Sorry, I'm blabbering again.

Signing off,

~Tia

4

Me thinks you NEED a third party to come w/you when you are seeing this "pain doc", so that you have a viable witness as to how this "pain doc" has been treating you & "treating" you!!! That dude has got to go!!!

Also go to a therapist & then you can tell "pain doc" that you ARE seeing a therapist. As many of my family & friends have learned the hard way is that constant pain goes straight to depression. M

5

Hi Tia,
I have read everything on this page and I am in total agreement with EVERYTHING that Luna has said

All the best and ad always

HUGGGGGGGGGGGGS

Ps you are not ‘blabbering’ at all!! This is the right place to let it all hang out(so to speak )!!!



Suzie

6

Hi Tia
3/4 of my reply to you got deleted .I don’t know what happened. I wrote it again
two more times but again same thing happened .i will try it again later as I am too tired now! Lol

7

Hi again Tia

I wanted to tell you that I read your other posts and I didn’t say anything because I don’t have much formal education or job experience as you do (for which I commend you ) so I have no advice or suggestions for you in that area

Suzie

8

Can you make an appointment to see a Rheumatologist? It is possible to have inflammatory arthritis, and have negative labs. The swelling and knots you are describing could be enthesitis which is associated with autoimmune, inflammatory arthritis types. It would be best if you could get in to see a Rheum before the symptoms subside, but just in case, make sure to take photos of the affected areas along with measurements. If the swelling and irritation subsides before that, take new measurements and photos. Also keep a log of these symptoms describing how it affects your daily life. Foe example: when my wrists are swollen, I can't open doors or jar lids. The pain is a 7of 10 at it's worst and a 4/10 at it's best. Include whatever information that best describes your symptoms and how they impact your life. I hope you get some relief and answers soon. Take care of you!

Tia said:

Hello Luna02,

The swelling in my feet and ankles makes them feel puffy - if that makes sense. Same thing with my fingers/hands/wrists. It's very painful. My forearms feel lumpy and raised, like if I had sprained something. This isn't all the time - it comes and goes, especially in the rain. The past two-three weeks though, it's been consistent. My Mom says my face swells too - it puffs up - but I guess I don't notice that because I see my face everyday and have TMD so am used to pain in my face.

I am going to see my Primary Care doctor to see if she can help me or refer me to someone who can. I already called for an appointment. I'll try the superfoods if she recommends it, since I don't know what is causing my swelling/inflammation.

I don't think my pain doc had an off day. He was helpful in the beginning, but now he's just been patronizing. He wants me off my meds completely, but won't offer me help in getting other non-med therapies to manage pain. I've reduced my medication by 75% in 7 months (and completely got off of two others) despite the fact he knows I've been suffering withdrawal symptoms and struggling with day to day activities after the 60% reduction point. He won't offer complementary/integrative therapies to help with the pain or refer me elsewhere. I need something to help with pain if not medicine. He is telling me that if I can't reduce down to 0% on my own, he'll force me. (Mind you, I've only been seeing him for a year, but I've been on these and other stronger meds for 9 years now.) He thinks I don't need medication or alternative therapies, but rather "group therapy", as in counseling. I don't think therapy is a bad thing, but it won't help my physical pain, and my emotional pain largely stems mostly from the physical. The physical pain won't go away from me complaining to a group of people that my neck and shoulders hurt, I have a burning sensation in my neck and back, swelling, fatigue, and brain fog. They can offer support, sympathy, and suggestions, but not solutions for physical pain that even doctors don't know the source of.

Sorry, I'm blabbering again.

Signing off,

~Tia

9

I know this has to be a hard place for you... but be PRO active in your health care. You know something is wrong and you need answers so start making appointments to other Drs and get it figured out. Try a neurologist... and then a Rheumy. . You have Fibro. but that does not mean that something else is not going on. obtain your medical records from your Dr. ALL of your Drs and ALL your records... all tests results and Dr. notes and diagnoses. Go pick up any and all MRI's and X-Rays. READ these things!!!! If you do not keep a journal start now!!! Write down everything that is going on and how it effects you on a daily basis. and take pictures of the swelling and some when you are not swollen. With pictures you can show the Drs. the swelling .... if you have luck like mine the swelling is not there on Dr. visit day...LOL... Even with my pictures they still scratch their heads...

If your pain Dr. is not helping you, I agree with the others here, then you need to find another one that will. I was sent to a pain management Dr. LOL... he has never done anything for me so I stopped going to him. He would ask me each time I went in " what do you want me to do for you?". I did not need his pills... my Rheumy treats my pain and prescribes what I need... I needed someone to look at me and send me to the right Drs to find out what was wrong. he only sent me to a social worker for talk therapy...needless to say... I am saving myself 25 dollars a month now because I did not see a need to go to a Dr. and pay him to do NOTHING!!!! He wanted me to stop seeing my Rheumy... I tried to tell him that if he finds out what the "real" problem is (he does not believe in Fibromyalgia) then I would leave my Rheumy. Well he never sent me for any testing ...NOTHING... so BYE BYE!!!

Sometimes we have to help figure out our own problems and call the right Dr. to check out our hunches... One thing you never want to do is think that something is just because you have Fibro. MANY other things can be happening that have some of the same symptoms as Fibro. So this is why you really should write everything down... When seeing your Drs. you tell them all your symptoms not just the new ones.

This is your life ... your body. You and you alone know what you are feeling. YOU have to push these Dr.s in the right direction... even if your hunch turns out to be wrong... push them to help you figure it out or to refer you to someone who will... BUT NEVER stop. These Dr.s are hired by you to do a job... Give them assignments!!!! Manage them!!!! Find that one Dr. who cares enough to listen to you and wants to help you sort it all out.

Sorry so long I get all excited when trying to get people to take control of their health care.

Hugggs, Belinda