Feeling Helpless, Little Support, Always Delayed Dr. Appointments!

Okay, I'm not here to whine, hope it's not taken that way. I have had Osteoarthritis for many years although I'm mid 50's. The Fibromyalgia diagnosis was I believe a few years ago, doctor started me on Cymbalta, still using it as it helps some so reduced my narcotic intake. I have had severe burning in my legs for years, mostly 8-10+ pain level. The outer parts of my thighs almost feel numb to the touch but just below the skin the pain is intolerable. I have Spinal Stenosis and Mild Cervical Stenosis that I was told was from the Osteoarthritis, I believe that was about 18 years ago. Two weeks ago I was diagnosed with Moderate COPD, I used to smoke a pack a day over 21 years ago, don't know if its the cause but certainly didn't help! I was also diagnosed with Severe Restrictive Breathing Disease, never heard of that one, someone else said they probably meant Severe Restrictive Lung Disease. I don't know, but four specialists and some can't get me into until March! The cardiologist got me in within a few days. I have the chest pain and shortness of breath as well as severe fatigue. Two years ago they said my heart was good but have High Blood Pressure, don't know if the chest tightness and weight feeling is Fibro or Heart? At least I may learn something soon with that. Not sure how to spell it but here's my best, the Pulmologist can't get me in until Feb 23rd! I can barely walk 20 feet without severe fatigue and the burning in my leg getting worse. When I sit as long as I don't put my legs up in my recliner the pain subsides enough to deal with it. I obviously can't exercise with all my health issues so I'm in a desperate situation. The only thing left I really enjoy is shopping with my wife taking along a few of the grandchildren but can't even do that anymore. The latest medication I was put on is Gabapentin 300mg 3 times a day for the burning pain. It doesn't work at all so far but I haven't finished them yet, I have a few days worth left so I'm not feeling hopeful! I'm on several other medications also. I have some questions. Do any of you experience the severe burning from the Fibro in the legs, mostly outer thighs? What about mobility issues? I know I have several different issues but I am wondering if anyone here uses a Mobility Scooter? Can one be prescribed for Fibro? We have Blue Cross Blue Shield insurance. I hate having to wait in the car and especially watch my wife carry in all the groceries. She works full time +. Appreciate all replies and help!

Hi! Glad you found us here, it's a great place for support. There's a post at the top of the forum that has lots of great information about fibro.

I can understand some of your problems. I'm younger, 29, but I've had osteoarthritis since I was 12. I try to exercise a lot. My dr gave me tramadol, which takes the edge off but I've got 2 small kids and don't want be doped up. I also do hot water therapy. It's great for my arthritis and my fibro. This may be something worth asking your dr about.

With the copd, have they prescribed breathing treatments, breathing exercises or anything of the like to get you through until you see the pull monologist? My grandmother had copd and I know the breathing treatments helped her a lot.

As far as chest pain, it's probably a great idea to see a cardiologist but it could also chostocondritis. It can affect people with fibro. It come and go. I had one episode of it. The nice thing is, while it hurts, it doesn't hurt your heart. I'd still see a cardiologist to be safe. It's always good to give yourself a sense of security.

As far as mobility issues, I do have mild issues. Some days my thighs feel like they are on fire then you add in my unstable knees and its a recipe for disaster. I don't have a lot of the other issues you have so I agree that you should just address the issue with your dr.

Good luck!

Angelic_Victory said...
Hi! Glad you found us here, it's a great place for support. There's a post at the top of the forum that has lots of great information about fibro.

I can understand some of your problems. I'm younger, 29, but I've had osteoarthritis since I was 12. I try to exercise a lot. My dr gave me tramadol, which takes the edge off but I've got 2 small kids and don't want be doped up. I also do hot water therapy. It's great for my arthritis and my fibro. This may be something worth asking your dr about.

With the copd, have they prescribed breathing treatments, breathing exercises or anything of the like to get you through until you see the pull monologist? My grandmother had copd and I know the breathing treatments helped her a lot.


As far as chest pain, it's probably a great idea to see a cardiologist but it could also chostocondritis. It can affect people with fibro. It come and go. I had one episode of it. The nice thing is, while it hurts, it doesn't hurt your heart. I'd still see a cardiologist to be safe. It's always good to give yourself a sense of security.


As far as mobility issues, I do have mild issues. Some days my thighs feel like they are on fire then you add in my unstable knees and its a recipe for disaster. I don't have a lot of the other issues you have so I agree that you should just address the issue with your dr.

Good luck!

They prescribed me an inhaler, Ventolin HFA 2 Puffs every six hours as needed for the COPD, apparently it is a very good Pulomonologist so he wants me to see him but I don't think had any idea it would take two months to get in.

I never heard of chostocondritis but will research it. I see the Cardiologist in a few days.

I read through most of the Posts last night and once before, thank you for your reply and information.

With my burning in the legs, mostly thighs, walking makes it much worse and now that I am so fatigued and out of breath I barely made it to the car walking out of a store. I believe anxiety is making it worse not knowing what is going on with my lungs. They did tell me it wasn't cancer so that was a relief. Thank you again!

crazykitty said...
Having a number of conditions myself, I know it is not easy. I'm sorry that you are going through so much and having the frustration of waiting to see the specialists.

I found that taking the time to research my conditions has helped me understand treatment options... it helps to take an active role, so you are knowledgeable about what medications are available to you.

I have heart disease and lung issues...getting my blood pressure controlled was trial and error...now taking a beta blocker and a calcium channnel blocker. Your pulmonologist will probably be put you through a series of pulmanary lung function tests on a routine basis. Both my cardiologist and pulmonologist encourage exercise for me. I have pulmonary hypertension, left ventricular diastolic dysfunction and concentric left hypertrophy which means my left ventricle is getting thicker and not doing its job very well. Before my lung cancer surgery, I was very short of breath...now I'm able to walk a mile or more, depending on mobility issues...there are times I do rely on my cane. Walking is very beneficial for me...wondering if your specialists will reccomend an exercise plan for you.

Hoping that treatment works well for you and that you will be able to enjoy shopping with your wife and grandchildren.

Keep us posted...we care!

hugs, Robin

Thank you, appreciate the encouragement! I agree, researching our conditions is a big help! Also allows me to understand better all the new terminology with the specialists!

Tim, I also had spinal stenosis as a result of degenerative disc disease. Ten years ago I had a lumbar laminectomy and the surgery gave me back the ability to walk again...before surgery, I was in constant pain and ended up with a dropped foot that dragged behind me. My surgery was sucessful and without it, I would have lost my mobility.

You might want to meet with a neurosurgeon to get as much info as you can to decide if it is an option you would consider.

Best of luck to you!

Hugs, Robin

 

Tim, you have gotten wonderful responses from our members.  In Fibro 101, there are some gentle stretching exercises that are done sitting down.  These could help you and possibly help prevent deep vein thrombosis from sitting all the time.  These were devised for long flights where you can't get up and move around much. 

 

There are good lung exercises you can do to help with your breathing, too.  Here is a link to them.

 

http://copd.about.com/od/livingwithcopd/a/breathtechnique.htm

 

It's really important that you start doing things like this to help yourself.  I know you are in pain and you have difficulty breathing but you do need to do some of these things to help yourself.  Pace yourself.  You have to become as active a participant in your health care as you possibly can. 

 

Be sure to talk to your doctor about Cymbalta.  It can raise blood pressure and it sounds like you don't need that added to your list.  Cymbalta can also cause fatigue.  Check out this link about it.

 

http://www.drugs.com/sfx/cymbalta-side-effects.html

 

I also have a form of RA that affects my back.  It's called ankylosing spondylitis and if I don't do exercises and keep moving, my spine can fuse so that I won't be able to bend, twist, etc.  Trust me....I'm exercising!  Also I take ibuprofen with food for the inflammation along with extra strength Tylenol, malic acid/magnesium supplements, vitamin D3 supplements (deficiencies in D can cause pain and fatigue), and a muscle relaxer called Robaxin that has helped me significantly.  I also walk daily.  I know you said you can't walk more than 20 feet, so walk those 20 feet, rest, and walk a little more.  The lung exercises might help  you so you can walk further, too. 

 

Be sure to let us know how your appointment goes because we really do care about you.  You will get the answers you need.  Just keep looking until you do.

Sherrine 

I can't speak to long term effects. I've only been on Cymbalta for 6 months but I did stop taking it (pregnancy that miscarried) cold turkey. I did get night sweats and felt like I had electricity in my veins. Other than that, it didn't really bother me much. I could have just been on a low dose or my body decided to go easy on me for once! Bout time! Sheesh.
Anyway, if I hadn't been in my situation I would have discussed with my dr if I was wanting off. Even with minor issues when quitting a drug it means that its a serious part of the way you function now. I was talking with my psychiatrist recently and he told me that while my gp had put on an ok dose for depression, he had not bumped it up so it could be more effective for my arthritis/fibro pain. That could be I didn't have more issues.

Okay, I'll update soon when I learn more!