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athena_

Member
Joined
May 17, 2014
Messages
18
Reason
DX FIBRO
Diagnosis
04/2014
Country
USA
State
az
Hello, I am relatively newly diagnosed with fibro (3 months ago). For me it seems like I've been struggling with the pain and degeneration for more than 6 years. My father's name for it is "the creeping crud." I wonder if others have the same trouble I do with the pain in your hands and feet? I sometimes have burning pain in my hands but mostly it's achy. Also I have serious strength and mobility problems with my hands. I feel like I'm losing my ability to use my hands. My skin on my hands gets really sensitive to touch, I can't set my hand down on my pant leg because the seam on the leg 'hurts' my hand. (I know I'm so weird). Tonight I tired to change the sheets on the bed and just didn't have the strength or ability to complete the task. I've been tested for everything under the sun and every single test (with the exception of low vitamin D) came back negative. My feet hurt too but only when I stand or walk for more than 2 minutes, once I sit back down most of the foot pain goes away. I have headaches and migraines 6 days out of 7. I have really bad mouth sores, not cold sores but they are called mouth ulcers and they hurt terribly. Today my neck hurts horribly like I pulled a muscle but unless you can pull a muscle brushing your teeth it's 'just' fibro pain. This is a laundry list, sorry. The last 2 months I've had terrible eye pain and light sensitivity. I'm not sure what's causing that but it's horrible. It feels like my entire eyeball and the muscles that move the eye hurt. I can't even get relief from sitting in a dark room. I use a sleeping mask to block out extraneous light from my bedside alarm clock. I have an appointment tomorrow to get my eyes checked - like every other test I've had done they will probably be FINE!

I'm extremely frustrated with everything. I don't have a supportive doctor yet. I'm seeing a PCP I've had for 16+ years but I'm not going back to her except for a bad cold or similar. I'm seeing a rheumatologist, a psychiatrist, chiropractor and a pain clinic. None of the doctors have been able to help me at all with pain management. My most pressing day to day issue is excruciating pain. And I admit that when I read about people suffering with this level of pain for years on this board I get more depressed. I don't believe I'm going to make it very long if I can't get some pain relief. I don't say this calmly but I am going to die if I can't get this under control.

I've tried many things and many medications all to no avail. 20 years ago I took ibuprofen for foot pain and it helped. But I've developed a sensitivity to it and now it causes me to retain water, edema. I can't take anything that might cause swelling. I haven't taken many real pain meds in my life but the ones I've tried have had absolutely no effect on me. I've tried at least 8 different antidepressant meds with no effect. I also tried Cymbalta and it had no effect until I tried to get off it - that was the single worst thing ever. I tried Lyrica for about 7 weeks and the side effects were so bad I had to go off, but I felt no relief from it either. I've tried creams with drugs in them that had absolutely no effect, voltaren gel too. I had surgery on my right foot to help the nerves open but it made my foot worse.

Sorry, I'm not trying to write a long boring book. My fingers hurt so badly that I have them wrapped in salonpas sealed with medical tape.

I lost my job just over a year ago so I haven't worked in 14 months. But I was a CPA and my job was super stressful. I'm 46 but I feel like I'm 86. There are so many things I can't do because of my hands and feet. I spend most of my days at home in bed or on the couch. But something has got to change. My diet is pretty darn bad, I don't drink alcohol or soda or use drugs. I do eat dairy, sugar, gluten and red meat sometimes. I got tested for gluten sensitivity and like every single other test it came back negative!

To end on a positive note I am blessed in my husband of 15 years . He's the kindest, funniest man alive and I think will be up for sainthood upon my death. We don't have children (unexplained infertility). We have 2 very old and beloved border collies, 2 young and silly cats and one independent desert tortoise.

Thanks for listening, I'll be around...
 

katydid

Senior member
Joined
May 5, 2013
Messages
200
Reason
Other
Diagnosis
00/0000
Country
US
State
Somewhere
You sound like me it how you respond to medications! I've seriously tried dozens and dozens of meds and to no avail they do nothing or give me side effects! I hate it! I finally have a few meds that kind of work usually but not always, yes opiates are on that list, I didn't want to take them but felt like I had little choice because nothing else was working..
You mentioned burning pains in hand and feet I think.? Have you ever heard of crps (complex regional pain syndrome) if not, Google it and see if anything sounds similar, it's another chronic pain ailment, my mom's had it for 17 years and they think I have it as well... Not saying that you have it but couldn't hurt to research and see if anything fits...
And I totally agree being a cpa would be stressful, I work for the government in that line of work if you catch my drift... It's extremely stressful too, especially because I get called nasty names quite often.. Lol its been hard trying to work like this...
And thank your lucky starts you found a good man! They're a rare treasure is seems!
Oh, and please don't die, we would miss you too much! Seriously though, you will find something that helps the pain, it just takes a lot of trial and error...
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Hi and welcome to the forum. I would like to add a few ideas that may or may not help, but just knowing about them might be of some use to you. The first one is for sleeping, research on the web, cotton fiber bed pads. This is not a regular mattress pad, but is a stuffed pad about 3-4 inches thick that you place on top of your regular mattress under your sheets. They come in all bed sizes and also come in foam and feather stuffed as well. These pads help cushion sore stiff muscles and hips, making you feel like sleeping on a cloud. I have used them for years and found my ability to sleep better without pain was greatly improved.

Next look for a vibrating mat. There are some that are full body length and have controls for heat and speed, and individual spot treatment. They also help by feeling of vibrations rolling from your neck to your feet and back again. When my pain is maxed out I use my to help relax my stiff muscles and ease the pain in my shoulders and neck.

Try bathing in epson salts in warm, not hot water in your tub or soaking your hands or feet. This is used by sport doctors to relax muscles and reduce pain and swelling. Some members find swimming in heated pools to be helpful in reducing pain. If you read around the forum in the pain and the alternative section you will find some other coping skills.

Please ask questions and answer other members posts. Look forward to seeing your name around the forum. :)
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi Athena! Welcome to the forum! Sorry to hear about your diagnosis and about losing your job. I'ts never easy to lose one's job, but when it happens we can do nothing but come to terms with it. It might have been for the best in your case, btw, because since you mentioned your job was so stressful... that could have made your fibro worse. Actually stress does that for me.

Right now I'm very stressed over several health issues, no surprised to have a flare up right now... So avoiding stress is excellent if you can. I really think it's good to see the positive side of everything :)
 

athena_

Member
Joined
May 17, 2014
Messages
18
Reason
DX FIBRO
Diagnosis
04/2014
Country
USA
State
az
Thanks for the responses guys. I will look into your suggestions. I used to be a frequent user of Epson salts before I became so sensitive to heat or warmth. I had my eyes checked today because of the frequent headaches/migraines and light sensitivity and it turns out I have better than 20/20 vision. So no explanation again. The pain clinic is sending me for aqua therapy when it can be arranged. Here's to hoping that will help!
 

foodietr

Member
Joined
Jun 4, 2014
Messages
10
Reason
Diagnosis
00/0000
Country
IND
State
Tamil Nadu
I hope you are doing better now. I read all the replies these wonderful people have given you.
These are my tips:
* Reduce intake of caffeine. It helps.
* Maintain a journal of your pain cycles. It is easy to show it to a doctor.
* Soak in a warm bath.
* Exercise regularly.
 
Joined
Jun 11, 2014
Messages
15
Reason
Relative
Diagnosis
01/2012
Country
Us
State
Texas
Wow this really hits home. I am studying to be a CPA. And, My father has fibro. I hope that you get the relief you need.
 

cpefley

Active member
Joined
Feb 22, 2014
Messages
40
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
CA
Yes! I have extreme pain in my hands and feet occasionally, and unfortunately it feels like nothing helps. I don't know what the heck it is. It is different from the arthritis pain. Glad to know there are others with this symptom!
 

Yekilon

Member
Joined
Jun 18, 2014
Messages
11
Reason
DX FIBRO
Diagnosis
03/2012
Country
USA
State
NC
I struggled so much until I was diagnosed and lost my job as well. For me the tide finally turned when I got the right doctor, I left the pain clinic and went to a rheumatologist. Many of my symptoms were then figured out and treated properly instead of "whack a mole" pain treatments. I don't know if you have this option but it did help for me. As far as pain in hands and feet I do sometimes get burning pains in both, a stinging on the skin mostly that my chart calls "neuropathy" So I did some googling and tried capsaicin cream which does help with that particular pain. I hope things get better for you!
 
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